Wednesday, June 25, 2008 6:47 AM CDT

Hello All,

I deeply apologize that I have not updated in so long, and I promise I will fill in the details in the coming days. The situation with the mass has turned into an infection with my port catheter. I'll explain the details of the biopsy and discussion with my surgeon later, but basically I have been getting sicker, and this last week has been the week from hell. That said there was much discussion over going to Boston or not, and due to certain circumstances it has been decided that because I am doing so badly that I really need to go and see my dr.'s there. At first it was a very open-ended opportunity, that we could just go whenever I was well enough to, whether that be in a couple of weeks or even into the fall, but for a variety of reasons that has become no longer the case and it was either now or never. This is NOT a situation that I would ever want to be in, and if it weren't for the specific set of events happening with the timing in which they currently are I would never travel feeling this badly. However, the past six months have been extremely difficult in many ways, and I've had many specialists that I've needed to see flat out refuse me as a patient (saying I'm too complex for them, that there's nothing they could do for me, etc. - all before ever stepping even one foot into their office). And especially given how I am currently doing I desperately need to see dr.'s who not just understand my disease, but who also have the desire to try and help me. If this isn't really making sense I'm so sorry, I haven't been able to update because I've been feeling so crappy, but also have been trying to point out to my parents what I needed packed, etc. So all that said, we are leaving in a couple of hours, and will actually probably be on the road by the time you read this. I am extremely nervous about this trip. I KNOW the traveling is going to make me feel a good deal worse, and even the activity of seeing dr.'s in Boston is going to be more than what I experience being bed bound at home, and that will also affect my condition. There are so many issues here, and I can't go into all of them right now, but please be praying for all of us, our safety, and especially that God will help me. He is already holding on to me I know, but I'm already in so much pain that I'm anxious about being in more, and I'm already feeling so ill that I'm anxious about feeling worse. I hate feeling this badly, and I've been down this road so many times before and I don't want to get to where it usually leads. Last time we made this trip was two years ago, and I almost didn't make it back home to Arizona, so that is in the back of my mind too. There are many things to be worried about, and many things that can and likely will happen, but we are trusting God with this whole thing and are also hoping for some positive things - that the dr.'s would be able to at least provide some answers even if they don't have solutions, and that even just being outside of my bedroom would provide some positive stimulation for my senses in seeing new things.

As scared as I am I know God is in control, and as I told my parents, maybe there is a reason that I am worsening to this point right as we need to go. Another thing that you guys could be praying for is that the insurance has denied authorization to see my dr.'s out there, which normally would mean that we would have to split it with them 60/40, but they have denied ANY coverage, meaning we have to pay for EVERYTHING out of pocket. I have no clue what kind of letter my dr. here wrote to the insurance director, but despite having no dr.'s here that understand my disease (though a couple do try), AND having multiple dr.'s here flat out refuse to take care of me (I'm not talking one or two, I'm talking numbers into the double digits) the insurance feels that I don't have anything going on medically that would warrant me to see the Boston physicians. PLEASE be praying fervently about this, because we have so many medical costs as it is (Arizona is not a state with good coverage like NY, MA, PA, or CA, where they have outstanding benefits compared to here). We are so blessed to have had the young adult ministry at our church donate toward our trip costs, specifically to help with gas (which is going to be quite costly), but also since my home health company here won't ship anything we have to cover the costs of shipping ALL my meds, fluids, and supplies, and they all have to be over-nighted on ice ('cause they require refrigeration), and most of it is fluid (fluids are heavy, which also means more expensive to ship). So our family would like to express a big thank you to everyone who donated toward that, we are so blessed by your generosity and it will be especially helpful since we now have to cover all the medical costs as well (an appointment with a physician usually costs anywhere between $300-$400 /- per visit). We are going to appeal their decision, but don't know how successful we will be. If anyone else out there would like to contribute to help with all these expenses I do have a medical account fund, and the account number is located toward the end of the introduction on my webpage.

More to come, please be praying. Thank you!

Love,
Bonnie

Monday, June 2, 2008 4:49 AM CDT

Update - Monday Night

Hi All,

Well a little change in plans here, the biopsy won't be tomorrow. I guess the dr.'s thought that because of where the mass is (under my armpit on the side of my breast) that instead of having the biopsy done where they usually are that I should go to the specialized breast cancer center within the hospital (it's called the Laura Dreier Breast Center). I guess the dr.'s thought they would be better at doing the procedure and that that they would probably have better equipment there as well. So now it won't be done until Friday late morning. Please still be in prayer, I'm still struggling. The more I think about it the more I think a lot of my current issues are due to my adrenal failure, as I don't really think there is going to be anything super serious with the mass (like I really doubt that it is cancer or anything like that). Please especially be praying for guidance for the dr. performing the procedure, that he would easily find the mass and be able to get to it as painlessly as possible. As I mentioned it feels like it has moved in even deeper, and when they did the ultrasound the guy couldn't find it until I pointed it out to him, though once he saw it they labeled it as "highly visible". So please just keep praying that they'll be able to spot it right away and get results quickly and that we can find a solution to all of this soon.

Thanks so much, love you all!

Bonnie




Dear Family and Friends,

I am writing to you tonight utterly frustrated. This year has been so difficult for me, much more than I expected it to be, and this latest situation is only adding to it. I went to the hospital the Friday before last to get blood transfusions, but I almost didn't go because I was still spiking fevers and feeling horribly sick the night before. So I was faced with having to deal with being so sick and go through a really long and difficult day getting transfused or stay home, although having such low blood counts makes it more difficult to fight illness and adds to feeling miserable. So I ended up going, partly because I needed to see my surgeon anyway, and rather than wait four more days to see him in his office (which would be another long excursion in getting there, waiting to be seen, etc.) we were able to set it up for him to see me while I was at the hospital being transfused since he was on trauma call anyway. He saw me (I bet it was his first trauma page to the transfusion center:-), examined the lump, and said he didn't think it had any intrusion into the area where my port catheter is tunneled, but that he was concerned with how close the lump was to it. He ordered an ultrasound, and only by God's grace was he able to pull a few strings to get it done that day before I left. So the ultrasound was done, and I went home. We finally got the results on Wednesday or Thursday of last week, which I think we probably would have received them sooner except that my surgeon wanted to actually view the tape himself, and the results showed that there was a "highly visible" mass, about 2cm, and they didn't think it just a fluid pocket. So given all that my surgeon said I needed to have a biopsy, which should be happening this week, and we think it's scheduled for Tuesday.

Because of the way my body works, how things that are benign in other people always turn into something horrible with me, my dr.'s have had me on a "big gun" antibiotic. I've been on it a ton of times before, so that's not really the issue, the issue is that whenever I go on IV antibiotics I typically end up developing a fungal/yeast infection somewhere else in my body. So after being the the IV antibiotics for a couple of weeks I developed a secondary fungal/yeast bladder/kidney infection. The cultures came back as globrata, which I've had a bunch before. So now I am also on an IV anti-fungal in addition to the antibiotics. The other issue that is complicating everything is that my adrenals continue to fail. I've had to take extra steroid doses pretty much everyday because I can barely even roll over in bed when my adrenals crash (your adrenal glands release the hormone adrenaline when your body is stressed to help it get through the stressor, whether that stressor is a situation like a car accident or whether it is an illness or disease, and so when the adrenals don't work properly your body doesn't get the extra help it needs to get through the stressor and so it ends up taxing the already depleted body even more so). Putting the kidney/bladder infection aside, since it developed secondarily to whatever the primary cause is, it is hard to tell if the mass under my armpit is related to the systemic issues I have been having, which are acting like a bacteremia, or not. They both appeared at the same time, and so you would think they would be related, but we don't know what the mass is and it could be something totally benign. With so many different factors it's hard to tell what's what. The mass could be unrelated to anything else and completely benign, or it could be related. I could have a systemic infection or something else, or it could just be that my adrenals are causing such huge problems that it's making me feel like I have bacteremia. There's so much going on and it could be totally related or totally separate. I would actually somewhat prefer that they be related so that we can figure out the cause for both issues and get them both treated. The mass also started more toward the surface of my body, and now seems to have moved deeper inside of me. This obviously concerns me for the biopsy, because it will be more painful if they have to dig around in there to get to the mass. Bottom line though, is that I need answers. The most frustrating thing for me at this point would be to go through all of this and not have a way to identify, treat, or get rid of this thing.

So where does Boston fit into all this you may be wondering. Well I am wondering that too. We are supposed to leave in exactly two weeks, but given how sick I still am I just don't see how I'll be able to make that timeline. The only way is if we get some answers pronto. The driving across country is going to be difficult enough not being sick, but with all this added to it would be even worse. And the last thing I want to happen is arrive in New England needing to be admitted right away. However, depending on what the biopsy shows I may need to get out to Boston anyway. So I'm just not sure what is going to happen yet, nothing can be ruled out. I am completely beside myself with the timing of this mass and being so sick. I just don't understand why this has to be happening right now, why couldn't it have happened a few months ago, why not a few months from now? I just don't understand why, on top of everything else I've gone through both physically and non-physically, this is happening and jeopardizing something I've looked forward to for so long. I wish I could tell you that I am completely at rest with God's timing; I know it is perfect and I know that He has a reason for it, and just because I am having a hard time resting in that right now doesn't void that truth and doesn't mean I don't believe it. Maybe I am too weak right now, I don't know. I do know that things are getting harder for me; I know that God is in control, and I know that His way and timing are perfect, and maybe there is too much happening physically for me to be able to rest in that, I don't know, I just feel the hardness and difficulty of everything right now.

Here are some things you can be praying for specifically:

1. the biopsy (which should be happening on Tuesday) - please pray that the mass would be easily identifiable to the interventional radiologist, and that he/she would be gentle, compassionate, and empathetic, and that it would be as painless as possible.

2. the biopsy results - please be praying that the results will show something, good or bad. I know that sounds weird, but those of you out there who have had tons of "unidentifiable things" will understand this. There are few things that are more frustrating than having a problem that is hugely affecting your life and not being able to identify it. Best case scenario would be that the results would show whatever the mass turns out to be is also causing whatever the systemic illness is, that way we could kill both of those birds with one stone and that gives me the best chance to get out to Boston once treatment gets underway. The most frustrating things would be that a) they couldn't biopsy it for some reason (either they couldn't get to it or if it was too solid to be aspirated with a needle) or b) that they would "just want to sit on it and see what happens", stuff like where there isn't any action to resolve the problem. As I have experienced many times before it's a situation where you either want good news or bad news, but not knowing anything is so frustrating.

3. please be praying that we get the biopsy results back quickly, so that if it shows something that needs treatment (or if the mass needs to be cut out) that we could get on that as quickly as possible. Also, quick results would be preferred even if it shows something benign or unrelated to my current systemic illness, because then we would need to go back to square one in trying to figure out what is causing me to be so sick.

4. if it does get to the frustrating point of not having any solid answers for anything please pray for wisdom and guidance. This trip has me very excited for a lot of reasons, but it also scares me for a lot of reasons. The last time I was out there remember, I almost died from sepsis, so I know traveling is quite difficult. Plus the whole problem of having a medical team here and there, but no where on the way, does concern me quite a bit. I do know God is in control, but it is something we have to consider. It we do end up driving cross country while I am still pretty sick it's obviously a big concern that I would worsen considerably along the way just from the strain of travel. Even getting my medical supplies from here to there is a huge undertaking since there is no supplier back East that we can work with. My dad has been working really hard on figuring out a schedule to get my meds, IV's, and supplies out to Boston/Maine, but there is always the chance that something could go wrong with that. So there are all those things and a ton more that actually have me quite scared, and after living only in my bed for so long I guess I would be pretty surprised if I weren't. My world is the size of my room, and while it is exciting to expand that it can be a little scary too, even without all the other concerns we deal with medically. I am very excited for the trip and am really hoping that we will be able to make it, but at the risk of looking like an absolute fool I am sharing these concerns with you so that you can understand how large of an undertaking it is (regular travel is complicated enough, this is on such a huger scale:-) and so that you can be praying for whatever it is that God has planned for us. But should we get to the point where we are going to go back East even if things haven't been resolved here, which we may have to, please also be praying for that. I really don't want to have to do it that way, but there have been so many things that I've had to do that I haven't wanted to that I have to include it in the realm of possibility.

I wish I had cheerier things to share, I know there hasn't been much of that this year. The struggles are still both physical and non-physical, and by non-physical I don't mean spiritual, I just mean things of life, people, etc. I wanted to say especially to my mito friends-Donna, Malisa, Aly, Heather, Kristina, Janet, Kristie, JoAnne, and everyone else I'm forgetting-that I love you guys so much and wish I had more strength to keep up correspondence. I owe you phone calls and emails, and I still plan on making them, but until then I just wanted to tell you guys how much I love you all and am always thinking about you and praying for you. Thank you so much to everyone who continues to pray for me, I know I would not be able to keep going if it weren't for your prayer support, especially this year. I hope to write more soon, but need to go rest now.

My love to you all,
Bonnie

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Friday, May 23, 2008 1:48 AM CDT

Hi, a quick update, Bonnie is headed to Good Sam for a blood transfusion and to see a surgeon about this lump she has. She is still feeling terrible and weak and has needed extra steroids to help her adrenal dysfunction. We have more cultures cooking as the antibiotics aren't helping her improve.

Please pray that she gets some relief quickly, and that we can identify and treat these problems in time to leave for Boston/Maine :).

Thank you for your prayers and words of encouragement on the guest book page. We should have an update tomorrow......

-Lyn




Saturday, May 17, 2008 5:40 AM CDT
Just a quick update to let you know that Bonnie took a bad turn Thursday evening and spiked a fever. She has a painful lump or abscess below her right armpit (the same side as her Port-a-cath). Her doctor started her on IV antibiotics, and blood cultures have been drawn & sent (preliminary results are still pending). She is in a lot of pain and is having a hard time. Please pray that the source of the fevers can be identified and dealt with, and that the lump will go away or quickly be taken care of. Bonnie is especially concerned because we have a window of time in which she needs to be in good enough shape to travel in the camper/van.

Thank you....Mummy



Wednesday, May 14, 2008 6:22 PM CDT

Dear Family and Friends,

I am so deeply sorry for having taken so long to update. This year has been very trying for me so far, and the huge physical struggles make everything harder in general. On top of the constant issues I face (frequent blood transfusions, frequent infections, etc.) I am dealing with some pretty heavy endocrine issues as well. Despite only taking in 800-1200 calories a day I have gained over 60 pounds since January (which now means I weigh more than my male family members, which is every girl’s dream right?:-) and have red and purple and horribly painful stretch marks all over my body due to such a significant amount of weight gain in such a little amount of time. I just keep expanding, which tells me something is really wrong since last year I was taking in more calories but maintaining a much lower weight. I’ve had to send my mother to the thrift store for three different rounds of “outgrowing” my clothes (and that's only since February). I know that being on steroids will bring about a certain amount of weight gain, but my body mass index is now well into the obese category and it is taking it’s toll on my mito, because my larger body mass is requiring more energy to function, and yet I don't have the energy to support it due to having an energy deficit disease. As you can imagine it is taking it’s toll emotionally/mentally as well, I don’t even recognize myself anymore and am disgusted at how I look. I don’t consider myself to be a vain person, it’s just that there has been such significant change in such a short amount of time and for no reason that I can see. One of my Bonnie-sitters told me that it doubly stinks because it would be one thing if I were gaining so much weight because of eating or something, at least I would be enjoying the junk food and sweets causing it, but I don’t even have that! :-) Aside from the weight there are other things that are pointing to an endocrine cause, because in addition to the adrenal failure problem I have I also have polycystic ovarian disease. I've also contacted my Boston dr.'s to see if they have any advice and am just waiting for responses.


Last week was extremely difficult (more endocrine caused junk), and I’m actually still trying to recover, due to an adrenal crash that hit at the same time I was having really bad IVIG side effects. It was awful, and felt like when I was back in the hospital when my adrenals had shut down. The whole week I was completely useless and could barely move. It also looks like this week I may be needing another blood transfusion, oh joy, (if not the end of this week then definitely next) but we’ll see. Obviously with so much medical stuff going on right now it really needs some attention, and since we aren’t getting anywhere with it here I really need to try and get back to Boston and see my doctors there. I really think it’s my only chance.

With that in mind, my parents, especially my dear mother, have been doing everything they can to come up with a way to get me out there, because not only do they see how desperately I need to see my physicians there, but it also happens to be my grandparents 50th wedding anniversary on June 28th and it would be really nice if the family could be there (it would be nice if I could be there, but if I were here at least one of my parents would have to stay with me, and I wouldn't want anyone else to have to miss it because of me). It’s a very difficult thing to undertake though, because I can’t fly commercially since I’m too high risk medically for the airlines to take me, and I have too much equipment for them anyway. Then there is the option of flying privately, but that’s not really an option for us since we don’t have the spare $15,000 (each way) to spend to charter a plane (and they likely would not be able to take my wheelchair at that). So that just leaves driving, which has its own issues. Our current wheelchair van has a lot of electrical issues, and it definitely would not make the trip, so we could rent one, but that would be over $100 per day (plus there isn’t a place for me to lie down, and I can’t sit up for very long, so forget 4-5 days). So my mother found a type of RV, but it’s not one of the big huge ones, it’s the size of a full sized van but has most of the features of an RV (it’s called a Roadtrek), plus I could lie down for the trip, which is the only way I could make it since it will be extremely difficult anyways. So we were thinking of renting that, which would be even more expensive (although purchasing one is over $100,000) but we can’t rent because the vehicle would have to be modified for my wheelchair, which they don’t like doing on rented vehicles. So that has been our big dilemma. Mummy scoured the internet, even checked out every state’s Craigslist, and she thinks she may have found one that we could buy to replace our current wheelchair van that is in pretty bad shape, but that would be less than the regular price for a Roadtrek. She and my dad had to go out to Nevada today to check it out and see if it will work. The problem is that they have had a lot of trouble working with this person and there has been a lot of back and forth. So we are praying that if this is what God wants for us that the deal will work out. It is still really expensive, more than my parents have ever spent on a vehicle before, but we just don’t see any other viable way. If anyone out there has any other ideas of how we might be able to get to Boston to see my doctors, or if you know of anyone who may have any ideas please do let us know. We have looked into Angel Flights and Mercy Wings and those types of organizations, since flying is really the most safe for us (we have a medical team here, and we have one there, but if I got sick on the way I’d be stuck in a really hard place), but those organizations only fly regionally (800 mile radius) and they won’t set up tandem flights to get us across the country. Even with the risk it seems as if that will be the most financially viable for us, even though it will be extremely expensive for the trip, if just for the gas alone.

It is frustrating for me to have to deal with things like this, and to make my parents have to deal with things like this. It would be so much easier to just buy regular plane tickets online like everyone else, and not have to deal with all these special arrangements because of a disease. I am so grateful to have parents that are willing to go that extra mile for me, and I am grateful to still be here at all. As I have said before it has been a very difficult year so far, physically things continue to be very challenging, but all the other stuff does as well. I would go into it more, but this update is already very long. I'll save the rest for next time. :-)

I did want to thank everyone who came out to the blood drive before I close. I think they had around 36 slots available and about 22 of them were filled. I know the donations will go to help a lot of people, there has been huge blood shortages all over. Despite everything I am trying to hang in, although it does get hard and discouraging. If we are successful in finding a way to get to Boston I am hoping the trip will uplift me a bit, it would be nice to see something outside the walls of my bedroom. I want to thank everyone who has continued to pray for me and keep up with my updates; it means a lot to me that you guys care and I know God is using your prayers to help keep me going. I love you all so much, and I'm hoping to write more soon, energy permitting that is. :-)

All my love,
Bonnie

P.S. Happy belated Mother's Day! There are so many wonderful mommies out there taking care of their mito kids, and they are true heros. There have also been a few families whose kids have gone home to heaven because of mito, please keep them in your prayers as they are going through a very difficult time. Thank you!

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Friday, April 18, 2008 2:35 AM CDT

Okay, I have a few really brief things I need to share with you all. I would love to be my usual long-winded self but am currently recovering from IVIG right now and am going in for a blood transfusion at the hospital tomorrow. So my mother and I have a very long day ahead at the hospital (we leave the house at six and won't get back until probably six or seven in the evening) and I'm not helping things by not being able to sleep from pain from IVIG side effects, which is also keeping Mummy awake. Anywho, so that is the first thing, yet another blood transfusion. I really need to talk with my docs in Boston about getting such frequent blood transfusions, because I know when I was getting them every 4-6 weeks last year that was considered quite a lot, and now I am needing them every other week, which is even worse. And the more blood transfusions you have the more likely you are to build up antibodies and the greater risk to have transfusion reactions. If anyone out there with mito has any experience with needing a lot of blood products quite often if you could please share your experience with me. I don't know how long it will take before problems start arising, but I do know once they do things go from bad to worse in a jiff.

Second thing on the agenda....one of my mother's co-workers at her school got the idea to have a blood drive in my name, precisely because of all these transfusions that I have been needing. Here is the pertinent info:

BLOOD DRIVE!

This drive is in honor of our friend,
Bonnie Codier

Sponsored by: Bethany Learning Center
Friday, May 2, 2008
11:00 am ~ 4:00 pm

Bloodmobile in Parking Lot (Bethany Learning Center is on the campus of Bethany Community Church in the NW corner, which is located at Price and Guadelupe Rds.)

Visit: www.Bloodhero.com
sponsor code “ BethanyLC”

- Don't forget your ID, you cannot donate without it
- Hydrate! UBS (United Blood Services) recommends drinking plenty of water to make your donation experience is the best it can be
- Please eat a hearty, low fat meal before donating

Eligibility questions? Call 1-800-288-2199 ext. 5497



A big, huge thank you to Kathe for not only coming up with the idea, but also for doing the leg work to make it successful. :-) Please come out ane donate if you can, there are a lot of us out there who need blood transfusions to sustain us and there is always a shortage.


As for me, I am still having quite a hard time. I am struggling physically no doubt, but I think when most people hear that I am having a hard time they automatically assume that it must be physical, when there are definitely those times when I struggle in the non-physical sense, just as we all do. I still haven't quite figured out how to share with you all what I am dealing with, but until I can please just be praying generally. I do want to share it with you at some point, because I know you all want to be able to pray specifically, and once I can figure out how to communicate it I definitely will. I love you all so much, I appreciate your prayers so much, and I really hope you all have a terrific week!

All my love,
Bonnie

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Wednesday, April 9, 2008 1:39 AM CDT

I am having a very difficult time right now, not just physically but also otherwise. I'm sorry I haven't updated in a while, not really sure how to put anything down into words right now, but when I do, or when I reach a point where I am more up to it/doing better, I will add a new update. Hope you all are doing well.

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Friday, March 21, 2008 1:42 AM CDT

I have been pretty sick this last week - another infection I'm dealing with. I've also continued to lose blood more quickly than I ever have before, so for the second time in a row I will be going into the hospital tomorrow for another blood transfusion after only two weeks.

Also, Grammy and Buppa are leaving on Monday to go back to Maine, so I've been trying to spend as much time as possible with them before they leave, which is why I have not posted in a while. I don't think I'll be able to get my Easter decorations on my page before Sunday, but I'll just have to put them up after. I hope you all have a great Easter weekend, it's my favorite holiday.

All my love,
Bonnie

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Friday, March 7, 2008 2:57 AM CST

I am having another blood transfusion, so I will be at the hospital all day today (Friday). I only had a transfusion two weeks ago exactly, so my counts dropped really fast these last two weeks. I have been extremely fatigued this past week (likely due to low blood counts in addition to the other medical stuff) and my belly pain has continued to increase a lot. I'll let you know how it goes at the hospital.

Love you all,
Bonnie

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Friday, February 29, 2008 8:11 PM CST

*New pictures in the photo album*

Well my sleep study did not go quite how I would have liked. I ended up having an immense amount of belly pain (more than I usually do), so I think that definitely affected the test. Just how it affected it I am not sure, because maybe it was good to see how pain affects my sleep, but then on the other hand it is harder to see some issues like sleep apnea unless you can get into a good sleep and stay there. Plus, since the dr.'s reading it don't really have an understanding of how different sleep issues affect mito (and how even more minor problems to a normal person affect a person with mito to a greater degree) I am not really sure how the test results will be interpreted. The tech did tell us off the record that I did have some apnea, that my legs move around quite a bit, and that I did wake up on and off a bunch, but who knows how the dr. will look at it. I just hope there is something they can suggest to help me get better rest, but I'm preparing myself for otherwise because it seems with mito that most times when I am hoping for something that can be done to help whatever situation that due to the unknown nature of the disease that the best they can do is see the issue (and sometimes that isn't even accomplished) but don't know how to fix it. No matter what ends up happening it should provide a good baseline for future studies.

Today is leap day, and usually people will take this "extra" day and do something special or productive with it, but unfortunately my belly pain has continued and I've just been feeling really rotten the past couple of days. I'm not sure why, other than there has been a lot going on medically with me for the past couple of weeks. Today is International Rare Diseases Day, since it's a rare day why not celebrate and raise awareness on rare diseases, of which mito is definitely one. Don't forget that there is a way in which you can support and raise money for mito that is very simple and easy. When you need to do searches online you can use www.goodsearch.com and for every search they will give one cent to your cause. Two of the mito programs they support are the United Mitochondrial Disease Foundation and the Mitochondrial Disease Action Committee. If you do a hundred searches a day, every day than that raises $365 each year (or $366 this year:-).

Hopefully I'll feel better soon, I can't stand it when I feel like this. I love you all, and will write more soon. Have a great week!

All my love,
Bonnie

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Wednesday, February 27, 2008 8:39 PM CST

This was written on Tuesday afternoon, but I didn't get a chance to post it until Wednesday evening:


We are coming into what is probably the most beautiful time of the year here in Arizona. The monsoon season is fun because of all the thunderstorms and lightening, and winter is fun because it doesn’t stay cold for too long, but springtime is usually always bright and sunny (although it’s usually sunny all the time:-) and the temperature is warm enough to be outdoors but cool enough to be comfortable. Today is one of those days, we have the windows open, there is a nice slight breeze, and it’s just beautiful. Unfortunately I’m stuck inside in bed, but at least with the windows open I can hear the birds and feel the cool breeze just a little. My parents bought a chaise lounger that has wheels, and so they can transfer me right from bed and then wheel me out back with very little trouble, it’s actually easier than using my wheelchair and more comfortable for me because I can remain lying down and usually I tire too quickly from sitting in the chair. Sunday I was able to try out the chaise and my grandparents, parents, and myself had lunch down by the water. It was lovely and I actually ended up falling asleep and taking a nap. Even on days when I’m not feeling well I try to take advantage of opportunities like that as much as possible, because this weather will be gone in no time and as hard as it is on my body with the transfers and other strains it is good for my mental and emotional state, as being cooped up in one room for months on end tends to make me go crazy.

Things are basically the same physically, still on the IV antibiotics for the infections and recovering from spending Friday at the hospital getting transfused. The nurses I had really went out of their way to make my parents and I comfortable, since we spend the whole day with them, and had everything set up for our specific needs when we arrived at 7am. They were very sweet and made the extremely long day go by as easily as possible. Yesterday I picked out some new glasses. As I mentioned before my eye dr. actually came to our house to check my eyes, something that is unheard of in the medical system here in AZ and only I wish all my other specialties would take notice of his compassionate care. His whole office is great though, and the glasses department even let my mother bring home several pairs of frames and then quickly return them so I could try on a few different pairs (otherwise I’d just have to guess based off of pictures and that never works). My Grammy, Buppa, Mummy, and Dad all agreed on the same pair, so that’s the one I went with, and when they come in I’ll have to take a picture so you can see them. :-) This week is another pretty busy week with medical stuff, I have a sleep study on Wednesday night, which will be very interesting and probably quite a hassle, but it really needs to be done so I don’t have a choice. Actually, it was supposed to have been done almost two years ago, so I’m really overdue. After the sleep study I need my IVIG infusion, and am actually overdue for that as well. So, even though those are only two things combined with the stuff last week and the ongoing infections it is a lot for me. Please be praying for the sleep study and its results, that it would go the way it needs to go and that the results would be helpful in finding a way to help me get better rest.

I was wondering if anyone out there with mito has trouble with getting hungry and needing to eat in the middle of the night. This has been going on with me for a few years now, and my mito dr.’s say that’s typical because my body needs constant energy that it isn’t getting, and while I eat lots of little things throughout the day at night I go a lot longer without anything, and so I wake up really hungry, and for a few years now have needed to eat snacks during the night. Now of course this disrupts my sleep, so my mother asked Dr. Cohen (who was in Phoenix a few weeks ago giving a grand rounds lecture) about this and he said to try having some corn starch right before going to sleep since that stays in the stomach longer and metabolizes more slowly. I’ve been trying this for about a week, and the first night it gave me terrible stomach pains (has that happened to anyone else?) and Mummy’s been mixing it up in chocolate milk, which makes it more tolerable, but it still only gives me a window of about 4-5 hours before I wake up hungry again. Anyone else out there dealing with this?

Another thing that has been difficult for me is this weight gain from the steroids. It’s horrible, because if you look at my labs I am malnourished, so it’s not like I am overeating or something, but if you look at my body it looks like I am obese. And it’s not just a looks thing, it’s actually uncomfortable for me, because it wasn’t a gradual increase in weight, it’s been happening all at once, so it’s really uncomfortable. Plus, I am at a double disadvantage, because another thing Dr. Cohen said was that people who specifically have Complex I mito defects (and I have I and III) don’t have the ability to convert the fuel they take in (whether it’s by food or TPN or whatever, and I take in some food, not enough to sustain me, and the rest is a non-lipid TPN) into energy, so whatever the fuel is just stays there and you don’t even get the energy from it. I know people with mito that a super skinny because they can’t take in enough fuel to match their energy needs so they body feeds off itself, but for people like me it doesn’t matter how much fuel I take in because I don’t even have the ability to use the energy, so it just sits there and I don’t get to use it (if you looked at me you wouldn’t think I was malnourished, but I am). It’s complicated, and frustrating, and I don’t like it!

I was reading in one of my favorite books the other day, My Utmost for His Highest, by Oswald Chambers, and he wrote something interesting that I thought I’d share. He was talking about spiritual tenacity, and that one of the greatest strains in human life is the strain of waiting for God (“Be still, and know that I am God” Psalm 46:10). And then he says this, “Tenacity is more than endurance, it is endurance combined with the absolute certainty that what we are looking for is going to transpire. Tenacity is more than hanging on, which may be but the weakness of being too afraid to fall off.” It made me think of how many times in my past and present that I try to just “hang on”; sometimes it’s because there is nothing left in me, other times it may be because I am not trusting God enough to take Him at His word. Especially over the last year or so that word trust has taken on a deeper meaning than it did before when it was just a vague belief in God and His plan. Now, for me trusting God is being absolutely certain of His love for me, His plan for my life, and His promises to keep me and not to leave me. Like Mr. Chambers wrote, life is about more than just hanging on and gritting our teeth until it’s over, that doesn’t sound like the abundant life that God died for. And in having this disease, or whatever suffering you may be going through, sometimes all I can do is just “hold on”, good thing God supplies the endurance needed to remain spiritually tenacious, and He even gives me the ability to trust Him, to be absolutely certain of all that He is. Amazing...

Well, I’ve succeeded in not going too long to update, but unfortunately it’s still quite long. Thank you so much to those who have written in my guestbook, the notes in there are such an encouragement to me and really do help power me to keep going in addition to your prayers. I love you all so much and am so honored that you all faithfully check in on me as you do. My love and prayers to you all, and I hope you have a terrific week!

All my love,
Bonnie

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Thursday, February 21, 2008 8:55 PM CST

Hello All,

Well, this last infection has certainly taken a lot out of me. I’ve been pretty out of it for over a week now, and am going through the course of the infection, which is now pretty usual. My steroid dose was bumped up to deal with the added strain, and I think that did help some, but I am still definitely dealing with infection stuff. Also, my blood counts have dropped extremely low, which of course is making me feel worse anyway, and so I am going in to the hospital tomorrow and will spend the day getting blood transfusions. Usually we only let my counts get to a certain point before we call and set up the transfusion, but I must have dropped very quickly this time because all of a sudden my counts were much lower than we usually let them get to.

All of that has made this last week feel very weird. All day on Tuesday I kept thinking it was Monday, and so when I went to go to sleep that night and I realized what day it actually was it felt like I had lost an entire day. But that was okay I guess since I’ve just been resting and trying to get better anyway, it’s not like I have a hopping social calendar. Today was pretty interesting though, in addition to my home health nurse stopping by my eye doctor came for a home visit. I’ve seen this guy for a while now, and he is really nice, and once I got to the point where I couldn’t get out during one appointment with my mother they discussed the situation and he said that he’d be willing to do a home visit at some point in the future. Well, today was that point in the future. My mother got her eyes checked last week and left a note for him, and he had a cancellation today and come over with a couple of his staff and all the lenses and stuff to check my eyes. It all happened very quickly. So, it was kind of weird for me at first, but it was very nice of him to make the effort and my eyes have changed so it was good to get my prescription adjusted. It’s too bad none of my other dr.’s are like that, since my eyes are pretty far down on the totem pole as far as my body goes. Aside from an occasional home health nursing visit we can’t get anything else at home, I mean that totally literally. Home health provision in this state is just nowhere near where it is in others.

The next big thing after blood transfusions tomorrow and then IVIG next week after I recover from tomorrow is to get a sleep study done. I continue to have great difficulty sleeping and just getting any sort of rest in general, so it is pretty crucial that a sleep study be done, although it will be difficult to coordinate. Other than those things I’m just trying to continue to get through the current infection issues and keep on keeping on and living the life God has for me. Sometimes it seems like nothing, an extremely hard nothing, and it gets frustrating that there really isn’t much more than just hard stuff all the time. I do trust God though, no matter what, that He is doing something and using my life somehow, because otherwise I couldn’t continue. It doesn’t make sense to me here, even though I want it to and it would be so much easier if it did, but that is where that trust comes in and every day that trust is an act of obeying Him and believing Him. I keep having to remind myself that even if I were perfectly able-bodied that I couldn’t do anything good on my own anyway, it would only seem like I could, And that is one area where suffering is a blessing, because I am forced to that helpless point everyday. It’s so difficult and frustrating, but my helplessness is His strength and the more I lack the more He can shine through.

I’ll write more later; and please know I love you all so much!

All my love,
Bonnie

P.S. I’m not sure if everyone got the update notification from notifylist.com or not; I heard some did and at least one who didn’t. Please let me know if you are not receiving an email notification that this page has been updated. I’m just starting to use this system, so there may be some bugs to work out, but also make sure that you go through the whole process of signing up and of verifying your email address when prompted.

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Wednesday, February 13, 2008 0:25 AM CST

Hi All,

I'm sorry to say but I am really sick with another infection. I've been feeling a bit under the weather for about the last week but now am just horribly sick. I woke up in the middle of the night Monday night screaming in pain, and then throughout the day I've been feeling worse and worse, so I think what started as a UTI/kidney infection feels like it may have gone systemic now. IV antibiotics were started today, so I am praying that they will kick in quickly, because I am just feeling really terribly. My whole body is hurting so badly, it's hard to describe but anyone who has had a bacteremia/sepsis or any really bad infection before knows what I am talking about. Please be praying that this infection will get under control quickly. I hope you all are doing well.

With love,
Bonnie

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Sunday, January 27, 2008 9:23 PM CST

Hello All,

Well, I have been home just about a week now and am journeying down the road of recovery. It has been really interesting trying to get used to my new port site as it is in a very unusual place (the reservoir is anchored on the lowest part of my rib cage and then the catheter is tunneled under my skin up to my check/neck). So I can’t really lie on my right side now, and Dad and I are still getting used to accessing this new spot when my needles need to be changed. Dad’s doing a good job though, and his hands are shaking less and less. :-) (jk, his hands don’t shake:-) I am still dealing with the pain issues that come with surgery, and the adrenal insufficiency problems make that worse. We have to check my levels this week, as I am still on quite high doses of steroids. I do think the steroids are helping some though, although my baseline keeps becoming worse so it’s hard to tell where I am at with things. The bad part of the steroids is that I have gained a lot of weight, probably 20-30 pounds although I haven’t been able to get on a scale in a while since we need so many people to help support me. I was already flustered around the time of the wedding since I had been dealing with swelling issues because of medication and fluids and of course didn’t want to look “big” in the wedding and with the pictures. Thank goodness the wedding isn’t now, otherwise I’d really be freaking out. :-) My legs are swollen even though I’m in bed all day, and my belly is really distended from my gut issues, and my fingers are too big for rings, etc. I’d love to be able to say that those kinds of things didn’t bother me at all, but I am still human (and a girl at that). It didn’t help that when I got home and needed a clean shirt that Mummy couldn’t find one that fit me, which would send most girls into a total panic. So off to Goodwill went Mother to get me some quick temporary tops. It’s so hard to know how long this will last, because there have been other times when I’ve been quite underweight (and for some reason it’s less humiliating to be underweight than over), but it seems everything with mito is every changing and always unpredictable. Thankfully God and my family still love me even with my “moon face” and all. :-)

Another change in my appearance has been that my hair was cut in the hospital. Actually, it was the first time ever that a dr. made me cut it, because with autonomic flare up I’ve been going through I have been sweating a ton (like soaking through my sheets multiple times daily) and the ID dr. was worried with surgery and wounds and ever present infection issues that the bacteria that lives on your skin would end up causing more problems than usual. So it is very short now, but it turns out that is the upcoming look for spring. I’m still getting used to it, but it’s definitely a lot easier to take care of, especially given my current state.

I’m still dealing with all the usual stuff; my gut is actually giving me more grief than usual, I’m still having the bad back pain, and just finished another round of IVIG. So I have the worst side effects of that infusion coming up in the next 24 hours or so, but I’m still in recovery mode anyway from everything else. One weird/potentially troubling thing is that my pacemaker generator appears to have come out of the pocket of tissue that it is supposed to be anchored to. It actually is reminding me of what just happened with my port coming to the skin’s surface. After surgery the pacer was buried so deep that you could barely feel it upon palpation (even after the swelling from surgery went down), but now you can see one of the edges actually pushing up under the skin. So we have to call that dr. this week and see what he thinks. I really hope I don’t have to go in so he can look at it, but I don’t know how else he would be able to advise us as what to do.

I have a couple things to share with you. First of all, you may have noticed that I joined NotifyList (which you can see immediately preceding the update on my website), where you can enter your email address and then they will send you a notification email every time I update my page. Previously a friend of mine, Quinn, has done this voluntarily much of the time, but this is an automatic thing so there is no time delay and also it also allows for direct contact with me instead of having to go through a third party. That said, we are so appreciative of Quinn, she is such a good friend and she has demonstrated such a servant’s heart in sending out my updates in emails. Quinn is so good at just filling in whatever needs to be done, no matter what the task, and I am glad to have found this automatic online service to not only free up her time but to also have a direct line of communication with all of you. So all you have to do is enter your email address in the space provided and after a confirmation email you will receive an email notice at the address you provide alerting you that my online journal has been updated (yay for technology:-). I have not used this service before so it will be fun experimenting with it, but I have other CB friends that use it and find it very helpful.

Also, for all my friends and family that attended Sean’s wedding, I was wondering if you would be willing to send me any pictures you may have taken. So far I haven’t seen that many, and unfortunately given my struggle to just get through the day wasn’t able to take very many myself. Plus, I just love seeing other peoples’ perspectives. :-) So if you have any, and have the time to send them, I’d appreciate any sent to my email address. Thanks!

Lastly, (and I apologize for the length of this update) I wanted to share this verse that my friend Donna reminded me of recently. Both she and her kids have mito and go through many struggles as well, and she is such a dear friend and so encouraging.

2 Corinthians 4:8-10
“We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed – always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body.”

I know my family and I are brought to this place a lot, where we feel all those things and yet God doesn’t ever let go of us. God made me and my body extremely weak, just so that He could show His strength to the world, so that it would be clear that it is His power that gets me through not mine. John MacArthur says, “The messenger’s weakness is not fatal to what He does, it is essential.”

Well, I really must be going now so I can rest some more, but thank you so much for bearing with me in such a long update. You may be sick of hearing how grateful I am for all your prayers, but they really are what get me through each day and I can’t express that enough. I hope you all are enjoying this new year, and know my thoughts and prayers are with you all.

ALL my love,
Bonnie

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Monday, January 21, 2008 3:14 AM CST

I am home now folks. After nine weeks inpatient I managed to sneak out late last night while my dr. was on vacation. :-) JK Sort of… I had reached the point where I was on basically the same regime as at home (which, as my nurses kept mentioning, I am labeled as a very “heavy” patient, meaning the staff had to do much more in taking care of me even with just my basics than most other patients, good thing we are on very good terms with the staff:-) except for one medication that I needed to be weaned down on so that I would be back on pre-surgery levels. But, seeing as I had so many major procedures/surgeries, that was going to take weeks. And my dr. was going to keep me for all the rest of that time. So I was kind of starting to have a hard time with that, knowing the long wait ahead, and then our prayers were heard, because my dr. at the last minute realized that he was going on vacation for a week, and for a variety of reasons changed his mind and decided to let me do the last step at home. I am not sure why he objected to this in the first place, seeing as we’ve done it this way before, and considering it’s actually easier at home since it’s a less stressful environment, and also considering how expensive it is to stay in the hospital especially when you’re almost out of insurance like I am, but bottom line is that he left to go on vacation and I came home to finish the considerable recovery I have left to do. It took quite a while to get everything re-ordered and set up with home health, but he signed everything the day he left and then the covering dr. discharged me since it took a few days to get everything set.

It has been so great to be with Sammy; he had been spending most of his time on his look out perch at the front window, even during the night when he usually sleeps with whoever is home, but last night he stayed the whole night with me in bed. It has also been good to finally get some sleep. The past while I have hardly slept at all during the night, and during the day there are always so many interruptions in the hospital. I do have to say though, that my home girls came through once again. The nurses on 12CD are wonderful, and when you are having such a hard time and have such a horrible disease it absolutely makes a difference when you have good nurses. Some of them are like family to us, and even though the situation obviously wasn’t ideal for a reunion it was good to see them again.

As for me, I am still having a hard time. I am only two weeks post-op, which to most people would well recovered, but I’ve still got a long way to go. The pain is still quite severe; my chest wall tissue is so mangled from so many surgeries and my new port is on the lowest part of my side rib in my abdomen and then tunneled underneath the skin up through my chest, so it covers much more area than it typically does. My pacer site is still quite sore, and both areas are still swollen. Plus I am still dealing with the adrenal insufficiency and steroid issues, and everything else (I am even still getting those shocks from my pacemaker in my chest! aargghh). There is just so much continuing to go on, I won’t bore you with all the details and medical jargon that most probably won’t understand anyway. :-) As I said, from day one I was labeled as a “heavy” patient, which was kind of funny to my parents and I since we keep up that load every single day here by ourselves. So, we press on. I will write more when I am up for it, or if something crazy happens. Thank you so much for your ongoing prayers, they are what kept us going and they are what will continue to keep us going. We are glad to be home, and we praise God and rejoice in that, but there are still many issues we continue to fight. Please continue to pray for us, for my parents that their strength would be restored after spending these last nine weeks going back and forth to the hospital, and especially Mummy since she spent most of the time there with me. Also for me as I continue to deal with significant pain, and my poor body that is falling apart – I know the only reason I continue to be here is because of God’s amazing grace. I love you all so, so much, and I hope you are all having a great new year.

Love,
Bonnie

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Monday, January 14, 2008 10:40 AM CST

Thank you for your prayers....Bonnie will write an update later - but for now know her port is working (and we are keeping an eye on it since it has been troublesome).
-Lyn


Saturday, January 12, 2008 10:10 PM CST

Bonnie is slowly recovering, and is getting a little stronger. One of her ports (she has a double port-a-cath) stopped working today, and they have been trying to get it cleared (it is plugged up). Interventional radiology has been consulted, so we will see what they say tomorrow. She has already had the TPA and heparin to try to get it working. Please pray that it will be cleared easily (it would be great if it was A-OK in the morning). She is breathing better, but she is still in a lot of pain.
We will update tomorrow. Thank you for your notes, cards, prayers, and encouragement!
-Lyn
1/6/8
Bonnie's surgeries were a lot more stressful than anticipated. She had extensive tunneling from her right lowest ribs, up and around to her upper chest and through her upper chest veins. The muscles are extremely sore, and it hurts her to breath. The left side had extensive work done in the muscle with the pacemaker extraction and examination of the leads as far as the dr. could get to. Then he created a new pocket closer to her sternum, so she has the old pacer pocket pain as well as the new pacer pocket pain. They also did a mid-chest lesion extraction, so her whole front is giving her terrible pain.
Another thing that happened is that her cortisol level was only 0.7 (normal is over 6.0) despite her daily dose of hydrocortisol and an extra 100 mg of IV hydrocortisol before surgery.The dr. was stumped as to how and why, and he gave her another 100 mg IV hydrocortisol today. He also restarted her synthroid. We are trying to adequately control her pain, but it our understanding that an adrenal crisis also causes a lot of pain.
Please continue to pray for Bonnie's comfort so that she can rest and heal. She cried and sobbed nonstop for over 7 hours, and became too worn out for anything more than a moan or whimper. She is unable to use her arms without causing a lot of pain to those chest muscles. The dr. upped her pain meds today, and she is still hurting, but able to rest for short periods of time.
Thank you for continuing to pray for Bonnie. This is an exhausting process for all of us. When you leave a message in the guest book, we will read it to her.....they are a huge means of support to her.

-Lyn


Friday, January 04, 2008 8:32 PM CST

Bonnie will be having her surgeries tomorrow (Sat) at 11:am. She is quite anxious, especially in regards to the recovery afterwards. She has not yet returned to where she was physically when she was admitted, so she is not going into this surgery at her optimal level. She is also well aware of the pain issues that will involve both sides of her chest. Please pray that the surgeons will have an easy time of accessing the areas they need for good port placement (there is a lot of scar tissue - which makes the accessibility a huge issue) and pacemaker placement (same scar troubles since she has had 3 other pacemakers). Please pray that the biospy of the "black flat mole" turns out to be benign, and that Bonnie's adrenal glands will get enough support with the extra steroids to get her body strong to combat the stress of surgery.
Thank you for your encouragement and prayers,
Lyn





Wednesday, December 26, 2007 2:22 AM CST
Hello,

I need to be brief and will let you know the stories later. The surgery that was scheduled for tomorrow has been canceled. I have a bad rash/infection around my neck and the surgeons don't want to be cutting through an area flooded with bugs like that. So I don't know what is going to happen now, but I'm sure today will bring some discussion. I do need a blood transfusion though, my counts are very low and I feel horrible. I'll write more later, but bottom line is still not doing well and surgery has been delayed.

Love you all so much,
Bonnie

P.S. Christmas was good, really good considering it was spent in my hospital room. Will write more later, but it was a good day. :-)

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Tuesday, December 18, 2007 10:27 AM CST

Bonnie is gaining little smidges of energy each day, although she is still quite weak - she is too weak for surgery tomorrow (and she has a high white blood cell count). They will most likely postpone it until the day after Christmas if the surgeon and the electrophysiologist have open slots. She will get her femoral line swtched to the other leg - probably later today.

Bonnie's endocrine studies are abnormal, so an endocrinologist will do some checking on her pituitary functions. Her thyroid tests all came back below the normal range which indicates a problem with her pituitary or hypothalamas. She has been getting steroids for the adrenal insufficiency.

Thank you for your continued prayers and words of encouragement. We have always been able to get Bonnie home for Christmas, so spending it in the hospital will be a whole new experience. We have a little tree up and a few cards on the walls to brighten up the room (she was moved to rm 1235), and I bought some battery operated candles that look pretty realistic. I also brought in my iPod player so that we can listen to Christmas carols :).

Please pray that Bonnie will get stronger, and that her pain will decrease. Please pray for her doctors and nurses, and for all of us. God continues to keep us focused on Him through all of this, and our hope is that His light will shine to all those who are a part of this process with Bonnie.

-Lyn

We know that all things work together for good to those who love God . . . —Romans 8:28

(today's http://www.rbc.org/utmost/index.php included the following: "The goal of faithfulness is not that we will do work for God, but that He will be free to do His work through us. God calls us to His service and places tremendous responsibilities on us. He expects no complaining on our part and offers no explanation on His part. God wants to use us as He used His own Son.")


Friday, December 14, 2007 12:03 AM CST

Thank you for all your prayers... .....Bonnie is still extremely weak, and in pain. Her adrenal glands are not working, and they started her on steroids today. They are also doing a bunch of blood work in the morning to see if they can address the chronic anemia and frequent need for blood tranfusions. Surgery is still scheduled for Wednesday, but if Bonnie doesn't get a lot stronger we may need to postphone it. She is quite concerned that if she is not physically better - then she will have a much harder time trying to get back to her baseline after the surgery.

I will post more when we know more :).

Love to all from Bonnie.....




Tuesday, December 11, 2007 1:15 AM CST

The line has not been pulled as we await blood culture results. It looks as though the new antimicrobials have helped to bring her white blood count down, but she is still in a lot of pain, and is exhausted from the pain. We are closer to a plan for replacing the pacemaker and port-a-cath during the same surgery. We need to get Bonnie's energy up for surgery - but it gets depleted with fighting the infection and the pain.

More later......

-Lyn

Sunday, December 9, 2007 11:15 PM CST

Today has been difficult with a lot of pain, and it looks like she has another infection. The Infectious Diseases dr. said that she looked septic and that they are starting 2 more antimicrobials as well as setting up a time to pull her femoral line out and put in a new one on the other side.

We are praying that the new antibiotic and antifungal will help her to feel better. She needs to gain some strength so that she can get her port-a-cath and pacemaker put in. Please pray for her procedures tomorrow, that her body will handle the added stress.

Thank you for all your prayers and support!

-Lyn



Sunday, December 9, 2007 12:24 AM CST

Another quick update.....Bonnie is in a lot of pain, and she is not getting adequate coverage in pain control. Please pray that she will get stronger, and that she will get relief from the pain.

We'll soon post about the findings and treatment during her upper and lower endoscopy as well as her upcoming surgeries.

-Lyn



Friday, December 7, 2007 9:24 AM CST

Bonnie wanted me (Mummy) to post a quick update letting folks know that she will have her upper and lower endoscopy this afternoon around 2:00 pm. They will give her FFP beforehand as her INR is too high and there is a risk of bleeding. Please pray that she tolerates the sedation/anesthesia and that she will recover quickly from the procedure.

She had a couple of units of blood and an infusion of IVIG earlier this week, and her body is still recovering from those.

Thank you,
-Lyn


Thursday, December 6, 2007 2:04 AM CST

Okay, there is quite a bit of confusion at this point. The dr. that saw the foreign object in my SVC is fully convinced of what he saw, and is THE expert here on such things, which is why we sought his opinion over others in the first place. The dr. who was supposed to figure out how to get rid of it is now saying he does not believe anything is there, and thus has seemed to basically wash his hands of my case. And the kicker is, that despite being asked by a couple of people, the one won't call the other. The other problem is that particular dr. doesn't really trust other opinions other than his own (at least from what we've seen), but since no dr. can specialize in all things that is the whole point of seeing the dr.'s that are the experts in what they do, because they would know best. So I feel very stuck in the middle, and very uncomfortable in that position. It would be one thing if there was some sort of agreement, but right now there isn't. And it's frustrating to me because the whole point of seeing a specialist is for their expert opinion, why seek it out if that opinion will just be disregarded if someone doesn't agree with it? So maybe I have something in my heart, maybe I don't, I would just like to know.

Also, it seemed as if we may have had an answer about why my pacer lead was malfunctioning, and it seemed as if that answer had a better fix, but the same people are involved in that issue, and things that were said even two days ago are being changed, and it is so frustrating. So please be praying for this time right now. I hate when stuff like this goes on, but we are trusting God for the outcome. More later...

My love to you all,
Bonnie

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Saturday, December 1, 2007 1:57 AM CST

Hello all,

I don't have time to write much but I did want to update you all a little bit. The TEE was yesterday, and it did not go well. The anesthesia I had last week with surgery was supposed to be written down in my chart with step by step directions so that I could have a good outcome with each procedure. The procedure itself was ok, but after, while metabolizing the anesthetic I had a severe adverse reaction that lasted about 4-5 hours, which is a record for me I think. So I am still recovering from that. The actual findings for the test were mixed. It didn't show any problems with my valves, or anything like that, but unfortunately it did show that I have a foreign body leading into my heart. The dr.'s couldn't believe that it was actually there, since it's a rather scary finding, but after reviewing with multiple dr.'s they are certain there is something there that definitely should not be there. The CT I had last week initially came back ok, but when the foreign body in my heart (my SVC to be specific) was found they double checked and it had shown up on the CT (why they didn't see it initially I don't know, frustrating). So it looks like vascular surgery is going to have to come and consult and figure out what exactly it is and how to get it out, because it has to come out. It's a pretty scary thing, and pretty dangerous, but I am totally trusting God. He has gotten me through so much to this point, so why would He stop now? :-)

The ID dr. I have now is pretty good (although now he, along with all my other dr.'s, is gone for the weekend), and he is also concerned about the object leading into my heart even just from an ID standpoint. We are getting conflicting reports about my latest blood cultures, one dr. says that two new ones are positive but another says they are all negative, so who knows. GI wants to do an upper and lower endoscopy at some point, but we have to orchestrate the timing with all the procedures happening. Putting in a new port is on the back burner for now, especially with my new heart concerns. When it does come time to put a new one in it has to be coordinated with cardiovascular surgery so they can replace my pacer leads and generator in a collaborative way. Still feeling crummy, and also still recovering from last nights ordeal. Thanks so much for your continued prayers. I hope you all are starting to enjoy the season.

Much love,
Bonnie

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Saturday, November 24, 2007 10:33 AM CST

Hi All,

My white count is too high right now to replace the port, and it also looks like I'll be needing to have a TEE (trans-esophegeal echo, ultrasound of the heart from inside the chest) before the port gets replaced anyway. There is a new ID here that I've never had before, and he seems to think that the fungal vegetation I had inside my heart last year wouldn't have gone away without surgical intervention, so we need to check it out. I am still in a lot of pain from surgery, and am feeling lousy overall with the infection issues. I had more activity in four days than the whole rest of the year combined last weekend with the wedding, and it took a few days for me to be able to turn myself "off". So everything that I was ignoring while I was "on" is now coming into play.

Please keep praying for wisdom for us, the dr.'s, and the med staff. It would be nice to get me as spiffed up as possible before I leave so I can be in the best possible shape at home, but that will need to include dealing with my broken pacer wire, and hopefully the GI issues/internal bleeding. I'll be having something done next week for sure, whether it's a TEE or port replacement, so please also keep praying for everything that's ahead for me. Some of the dr.'s are getting the mito stuff a little, but others still aren't, so please also keep praying that they will make their decisions based on what is right for me and this disease instead of just what they're used to doing.

Will hopefully write more when I can, but am hurting too badly right now. I hope you all had a wonderful holiday, and know how much I love you all!

All my love,
Bonnie

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Wednesday, November 21, 2007 9:11 PM CST

Bonnie is back in her room on the 12th floor after having her double port-a-cath removed in the OR late this afternoon. They place a femoral line (upper thigh) for IV access, and she will have 3 heavy duty IV microbials to clear her blood of the infection before they implant a new double port-a-cath (maybe on Saturday). She is in a lot of pain, and we are hoping that this will diminish quickly.

Thank you for your prayers and notes....they are encourageing to Bonnie and her family :).

-Mummy



Monday, November 19, 2007 5:11 PM CST

I am on my way to the hospital immediately after I write this. In fact my father is encouraging me to get going. In answer to all your prayers I made it through the wedding and I am still alive. I am doing worse than I was, which is what I expected, but I would have done anything to get through the wedding and I did. God was good, but now things have to be dealt with. I was able to be Cinderella and now the coach has to turn back into a pumpkin. I am not sure how long I will be in, but I do need to have two surgeries, and whether they both will happen during this admission or if they will require separate admissions I do not know, but this is going to be extremely difficult, in many ways, and I need much prayer for this as well. Prayer not just for me, but for my dr.'s and staff, and that everyone will have my best interest at heart and that they will listen to the things that are different about mito. I am also praying that they will include me in the decision processes, and that my comfort level will be of extreme importance to them, because it is for me. I have to go, but I will try to update when I can, or have a friend update in my guestbook. My sincerest love to you all, and much gratitude for the prayers that got me through the wedding. It was magical, so beautiful, and I could not be more happy or prouder of my special brother and my friend, his special new wife.

Love,
Bonnie

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Thursday, November 8, 2007 5:06 AM CST

Thursday Night update:

I'm going in for a blood transfusion tomorrow, which will take all day. We are concerned about my port and trying to find a creative way to work with it, since if the top end is accessed with a needle it will likely tear open the extremely thin layer of skin covering it, causing an open wound which would require immediate surgery to remove it (which again, is a procedure I would not recover from in time for the wedding). We will have to see how it goes though once we get to the hospital and is also dependent on who I get as a nurse and what she thinks. We are going to try and be creative in handling it to minimize issues, and then just try to hang on until immediately after the wedding, but we'll have to see how it goes. I'll update more when I can. My love to you all!






I know it is a touch early for Thanksgiving decor, but the birthday stuff stayed up way too long and I just had to change it. Plus, with everything going on right now I likely won't be able to change the "fun stuff" that decorates my website before the actual holiday anyway, so I guess it's best that I got started early. I do really enjoying putting together the graphics and such for my online journal, I don't really get a chance to use my creativity that much and so this gives me an outlet to do that.

I'm not going to go into much detail, because I would be writing all night and you would be reading all day, but things are very bad right now. The infections I have been fighting for a month now have not gotten any better, and on the contrary, I get a bit worse every day. I don't know if it is resistance or what, but my body is maxed out trying to deal with the infections, deal with my port infections/problems (explained below), deal with my worsening heart issues that cannot be dealt with until the infections are, and the severe GI problems that seem to be last on the list, and yet which cause me immense amounts of pain. Because all my energy is going into dealing with all that my gut shut down and I ended up with another pseudo-obstruction, so I have not been eating at all for the last five days or so. All this is happening and there is less than a week and a half before Sean's wedding. My dr. wants me to be admitted, but I am afraid to go into the hospital because I know I won't be out in time for the wedding, and I don't know if they'd be willing to even let me out on a pass. I don't think I can remain in my current condition for the wedding either, and my biggest fear is that I will get much more worse and in critical condition just before the wedding and miss it entirely. My dr. says I am too unstable to remain at home, and that I've been too unstable for awhile, but that we've been pushing the envelope and we're just pushing too far now. Plus, if I were admitted I know they would want to take out my port immediately, because not only is it infected, but it has been pushed out of its pocket to the surface of the skin, and especially for the upper reservoir (since I have a double) there is only a very thin piece of skin covering it, so thin that we can actually see the color of the port through my skin. And it is pushed up so far that you can see the whole outline of it, when it should be buried into my tissues and not visible. I think I might be able to recover from them putting in a temporary central line if they left my port in, but to take it out is going to be too big of a surgery to make it to the wedding. Also, I need to get my IVIG infusion, and my blood counts are very low, so I need another transfusion, but both those things require having both port reservoirs accessed because they can't mix with my every day fluids and meds, and since there is only the thinnest layer of skin covering the top one we can't access it.

So, big problems that I have no clue how to solve. I feel really horrible and can't believe all this is happening right now instead of in a couple of weeks when it would be more convenient. There is no question that I will be admitted, and there is really no question that my port will need to be replaced (in addition to my pacer leads), it is only a matter of when, and there are pros and cons to each scenario.

So, my parents and I covet your prayers and support at this time. I'm sorry it took me so long to update, and even this update is not covering very much, but hopefully this slice will give you some idea of the whole pie. We are seeking God, and know that He will answer with His plan. He knew this was coming, He holds my life in His very capable hands, and I know His perfect plan will unfold.

My love to you all,
Bonnie

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Wednesday, October 31, 2007 3:35 AM CDT

A quick update to ask for prayers on Bonnie's behalf....she is struggling with fevers and pain from this infection that isn't clearing up....

Thank you...


Tuesday, October 23, 2007 3:35 AM CDT

Hi all,

I know it's been a while since my last journal entry, and there's a reason for that. I have been so sick, especially this last week. I've had fevers the whole week, and despite tylenol and ibuprofen I still can't get rid of them. The day after my birthday (which was a very lovely day, more on that later) I had to go in for another blood transfusion. My counts were very low, and so I figured that was the reason I was feeling so badly. I also had a round of IVIG the week before, and so that adds to it as well, and actually I am going through another round of IVIG right now as well. But I was not bouncing back from either of those stresses, and I started having other symptoms of bacteremias/sepsis aside from the fevers. We did blood cultures which showed a bacterial blood infection (bacteremia) and it was a very resistant bug, out of like 10 tested antibiotics (when they test the sensitivities of the bug to the antibiotics) only 2 of the antibiotics were not resistant to that particular bacteria that was in my blood stream, and usually the bug is not that resistant. So I was started on IV antibiotics to deal with that. But I still was not getting any better, and started getting really bad UTI symptoms, which in my case is rather scary, because my UTI's can turn into sepsis almost immediately. So we tested my urine with both a UA and cultures, and usually we only rely on the culture because my UA's are typically all normal even when infection is present, which shows up in my cultures growing out. But this time, when my symptoms were so bad, even the UA came back showing overwhelming infection growth, including both a bacteria and a fungus. So I now have three bugs in me, two bacterias and one fungus, and am being treated with the IV meds needed.

However, I still haven't been able to shake these fevers, despite all the treatments, and it was starting to make me very nervous because my situation is so precarious already. I kept asking my parents what they thought could be going on, since I couldn't think of anything, but when we changed my port needles tonight we pretty much got our answer as to why things have still been so bad. My port has been really sore lately, but it's been like that on and off for a while, and I've been dealing with different infection issues and having blood clots around it and a whole bunch of other issues for about the last six to eight months, so it's been really sore plenty of times before. But when we went to take the needles out to change them my whole dressing was soaked with puss and there was green and yellow puss and drainage coming out around the needle hole and even more so once the needle was removed. It was disgusting to say the least. My dad, who has been in the medical field for over 30 years now and seen the worst of everything, usually tends to downplay everything and under-react, but even he was like wow, this is the worst I've even seen this, and a big problem. So it seems for sure that my port is severely infected, especially considering the fact that I've been on antibiotics for the last few weeks. If it's a bug that I'm not currently being treated for, then maybe there's at least a chance that we could use IV antibiotics to take care of it, but again, even dad thought that there was a pretty good chance that my port would have to be replaced. Again, as if anything else could go wrong.... I keep saying it and somehow more things, and major things at that, do keep going wrong. uuurrrggghhhh!!!!!


So, all this is insanity. Three weeks before the wedding and this happens. So now we have to look at things, if it does need to be replaced do we do it before the wedding to prevent further infection issues (especially since I have such major ones right now) or can it wait a few weeks, or is that risking a sepsis that I might not survive? I don't know anything right now, but I hate that I have to even think those things. To update what else it going on...We are still having issues in getting a hold of the EP cardiologist. His office is still giving us some issues; the communication is fine once we get him, but it's the getting to him only that is difficult. When we did finally get him he was under the impression that everything had resolved itself and that I was fine (I'll let you assume how that made me feel). Where he got that idea I have no idea (maybe his staff, we don't know), but that could not be further from the reality of things. I'm still having all the problems I've been telling you about all this time, it just keeps going on. He finally talked with the CV surgeon to see if he could use thorascopes to implant epicardial leads, but he said that was not an option for me for a few reasons that are too complicated to go through here right now (I'm trying to be brief, am I succeeding? no, but I am trying :-). So, that potential third better option that we were hoping for does not exist, but now instead of going with the only real option we have of putting the leads inside my heart the EP cardiologist won't do the procedure because he is too afraid of the infection issues that procedure creates. I get that, and I understand that position, but we don't have any other choice, and we can't just leave me like this. So, I'll go more into the other issues with this situation next time, because there are so many big picture issues, and again, I hate that I have to think about things like that. I hate that I have to think about things like if this is my last year to be alive what do I want it to look like, etc. Stuff like that... but my dr.'s in Boston are in favor of placing the leads in my heart, because they know that is my only option and they for sure do not want me left in my current state. They have some suggestions for things we can do to try to help prevent infections as much as possible, and we are trying to get the EP cardiologist here to talk with Boston dr.'s so that he can hear all that. So, more on that to come, but please keep praying for my heart, really my whole body right now, it's going through an extremely hard time.

The internal bleeding continues as well, and we finally talked with my surgeon, and he of course said that he doesn't want to do the endoscopies until the cardiac stuff is done. And of course the cardiac stuff can't even be touched until the infection issues are dealt with. And now that I have a bacteremia, a severe multi-microbial UTI/kidney infection, and what looks to be a pretty severe port infection (cultures are pending, both site and blood), it looks like the infection issues alone will be a feat before we can do anything else, of course. So, no GI bleeding help until cardiac is helped, but no cardiac help until infections are gone, and the infections are what tossed the dog, that worried the cat, that killed the rat, that ate the malt, that lay in the house that Jack built. :-) Oh yeah, and did I mention that my brother's wedding is in three weeks?!?!?!?!?! :-) Stressed much? Low reserves for me and my parents much? Low resources much? Yeah, I'd think so.

So there is some other stuff aside from health issues, and I want to update you all on Grammy as well. But since it had been so long I at least wanted to update you all on me physically, which you can see is certainly a long enough update in and of itself. I am keeping the birthday stuff up a little longer, as it is my brother's birthday on Wednesday, so this week it is in his honor. I know you all are praying, and we would not keep going without it. Please continue to do so, this is such an enormously stressful time, and I really don't know how much more my body can take. God will sustain me as long as He wants, and I trust that and rest in it. But the road for my race is very arduous right now, and we can use all the support and prayers we can get. Please also keep in mind the other mito families that are struggling right now if you can.

I love you all so much and will update again when I can.

Much love,
Bonnie

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Wednesday, October 3, 2007 5:26 AM CDT

Well, I guess you all can tell from my rather understated :-) decorations that it’s my birthday tomorrow, October 4th, when I will turn 24 years old. I can’t believe I am that old! Because of mito I feel almost suspended in time because I’m not going through the normal life stages that usually mark you life. It’s weird, but rather than delving into that I’ll save it for later and keep this short.

Basically no movement yet really. We’ve called the dr.’s office several times and still haven’t heard back from him yet. As each day goes by I get more and more frustrated, and every day matters; each day is another day I will need to recover from surgery and each day that goes by in another day closer to Sean’s wedding. With how my life goes I’m guessing they’ll finally get their act together the week before the wedding. :-) Even with the daily frustration though, I’m always brought back to the fact that God must have a plan, there’s no other answer for this delay. If I were anyone else and God didn’t have a reason for this delay then I would have had surgery the very next day after being in the ER, which is what they told me initially. It still is so frustrating though. I still have the bad heart symptoms, and the extensive monitoring also continues, and I am still getting weaker with each passing day. Also, we got the speciation back on my bacteremia, and it turns out it’s coag neg staph, and a very resistant strain at that. This strain is resistant to ten out of thirteen tested antibiotics, not good, so I’m on Dapto for the next six weeks. Hopefully we’ll have a plan in place for heart surgery by then.

Also, we heard back from my CR surgeon who is dealing with the internal bleeding problems. Because of the current major issues he doesn’t want to do the endoscopies until the other stuff is cleared up, which we were expecting, but I still have to contend with the bleeding issues. My blood counts are very low again and so I need to have a transfusion in the next couple of days, but we need my dad’s help to get me out of the house to the hospital and he is going on a business trip for the next couple of days (and missing my birthday too :-( ). Our van that accommodates my wheelchair is in really bad shape and my mom can’t handle it on her own in it’s present condition, so we’re going to have to figure something out. Meanwhile, I am looking forward to my birthday, although I’m feeling so badly and I wish I were able to enjoy it more. I had IVIG over the weekend and am still dealing with the nasty effects of that. I plan to celebrate my birthday for a while though, and really enjoy it. There’s a whole lot of issues I’m having to deal with, like the very real probability that this could be my last birthday, but I’ll go into that later. I told my family though that since this could be my last birthday that they needed to give me all the presents they would have given me later in life, to make up for the birthdays I’m going to miss. There has to be some perk for having a terminal disease right? :-) Needless to say my family thought that was pretty funny, but we’ll see what actually happens tomorrow. :-) My Aunt Twink’s birthday was yesterday and Buppa’s is on Saturday, and my good friend Jaclyn’s is on Sunday and Sean’s is later in the month, so October is a good birthday month for us. :-)

I know I always say this but please just keep praying and leaving notes in the guestbook, all the support (prayer and otherwise) means so much and helps keep us sane. I’ve mentioned before how all this almost doesn’t seem real, most people barely have one big issue their whole lives and I have three major problems all at once, not the mention the rest I’ve already been through and what is still to come. Grammy is also in an urgent situation needing brain surgery to remove her tumor but is likewise in a situation where she is waiting to hear back from her surgeon. So, things are tough, but Jesus didn’t say life would be easy, He promised it would be hard. But people, support, and encouragement are mandatory to live the Christian life, we cannot get through it without each other, and that’s why the church as the body of Christ is in existence. You all mean so much to my whole family and we all love you guys so much!

I hope this week goes well for everyone, and I’ll try to update again soon.

All my love,
Bonnie

P.S. If any of this doesn't make sense or sounds weird it is probably because I'm not feeling well and am really exhausted. Hopefully despite all that it'll make sense. :-)

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Wednesday, September 26, 2007 2:31 AM CDT

Hi All, well you're in for a treat today, a shorter update! :-) And, you didn't have to wait several days for it! :-) (if you missed Monday's update check the journal history because it has important info). But, unfortunately the news is not good. Every time I update it seems like the news couldn't get any worse, and it almost would seem to the reader as if I am being overly dramatic about the current events, but the events I relay are real and completely unembellished. We have reached a stress level here that I don't think any of us thought we would have to get to even once in our lives, let alone the many, many times throughout my life that we have had to endure. As if everything about the current situation weren't enough to deal with we got another bit of bad news which is completely unrelated to my cardiac status, although will affect it.

Because of the physical reaction I had Saturday night when my port needles were changed (a very similar reaction that I had last year right before I went septic with my almost fatal fungemia-the one that kept me in Boston for three months) I had blood cultures done in hopes of being proactive. We didn't really expect anything to grow out because we usually don't do blood cultures until I have more advanced symptoms of bacteremia, but even so early on my blood cultures did come back positive for gram positive cocci, so IV antibiotics were started today. They grew out pretty fast, and once the speciation comes back we will switch to a target specified IV antibiotic. So even if we do get a plan soon heart surgery will have to be delayed until the bacteremia is taken care of. There is no way they would do heart surgery with a rampant systemic infection.

In other cardiac news...two nights ago, after the pacer rep left, we did a home download (using this little device that downloads your pacer info through the phone line straight to your dr.'s office) and just got the report today. It showed again the setting change that happens when something is broken with a lead. Periodically throughout the day I get electrical shocks in my chest where the pacer generator is, and that is another sign of this setting switch due to broken leads (it feels really weird). So I have to do a couple more of those home downloads this week so the dr. can keep an eye on things, but more and more evidence is showing the lead malfunction, and we just need to get going on a plan to fix it. The dr. was supposed to talk with my CV (cardiovascular) surgeon but we haven't heard if he has or not, so please keep praying for that conversation to happen and be profitable.

So, definitely not what we were expecting, and certainly the opposite of what we'd hope for. But again, there must be a reason for it, and God is certainly in control of it. I am stressed, I am frustrated, and I am hurting both physically and in other ways, but I do have peace, and I do trust that God has more wisdom than I have understanding. Please keep praying, please keep leaving notes, you have no idea what you all mean to me and how much I appreciate and love each one of you. This is a hard time and a hard road I've been called to run, but just like in earthly races you all are there cheering me to keep going and holding out refreshing cups of water/encouragement.:-) I will let you know more as things come up, and hopefully only news of progress and plans will be next, as it would be nice to be done with the bad news and lack of action.

All my sincerest love for you all,
Bonnie

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Monday, September 24, 2007 4:07 AM CDT

(part of this was written Saturday and the rest late Sunday, so pleas excuse the discrepancies in timing…:-)

Okay, I'll try to summarize this as best I can, but it's kind of complicated. First though, I just wanted to say a big thank you to everyone who went to the Golden Spoon on Wednesday, there was a huge turnout I've heard and I just can't thank you enough for supporting us and for helping other mito families by raising awareness of the disease. Okay, on to the medical side. There are two EP (cardiac electrophysiologists) that we've been working with. The one we were given to when I was in the ER two weeks ago I will call Dr. 23, and the one who did several surgeries on me a couple of years ago I'll call Dr. 32. We basically waited all last week trying to get a hold of them, but their office staffs both would not pass on information to them and just kept trying to get us to come in the office. Both dr.'s were supposed to call us back last Friday, but neither did.

So finally late Monday Dr. 23 calls and sets up surgery to place the leads endovascularly on Wednesday. But, as we were getting that all together two things complicated that rather simple plan. First, we got a call from Dr. 32 who had differing ideas but also, Dr. 23 wanted to place new leads and a new generator, but also leave the old generator in and just turn it off. We knew the leads had to be left in, because they'd have to crack my chest to remove them, but neither us not my other dr.'s had ever heard of leaving the generator in, and all my life I was told to never leave in hardware that isn't being used, because it is just a magnet for infection, and since we would already be multiplying the infection risk many times over by putting in endovascular leads that was certainly not a good idea.

Also, in talking with Dr. 32 he said he was absolutely against putting in endovascular leads, probably because he was the surgeon dealing with all my heart infections, and he also seemed more concerned about infection than Dr. 23. Dr. 32 also became the first dr. here to ask to speak to my dr.'s in Boston, usually we're the ones begging the dr.'s to call them. And to add to all the confusion, when we told Dr. 23 that my other dr.'s would rather the old generator come out because of the infection risk he said that he would put the new stuff in but that we'd need to find another surgeon to take the old one out in a different surgery (hello, not an option!). So, that just added to the strangeness, and with all that confusion and craziness we decided to cancel surgery, which was for the next day (all that happened within one day, no action for a week and then all that in one day).

So, we were left with trying to figure out everything with Dr. 32, but for the last three days of the week his staff would not let us talk with him. And, when we had talked with him early Tuesday (before we had canceled surgery) since his staff had not given him any info or any of our messages he was playing catch up on everything that had happened the week prior. He did finally call late Friday, and said that he would be talking with my cardiovascular surgeon (who he really respects and thinks is really good) on Monday to see if he could replace the broken lead through scopes in my chest, like how they do arthroscopy on joints and in orthopedics. But he also sent out a pacer rep to check my pacer and see if she could figure out anything from what the computer chip inside it said. So she came this morning, but as usual, I'm really frustrated with the result. I've had three pacer interrogations in the past three weeks and each one looked fine, yet I still had symptoms. Instead of going through all the technical stuff I'll just try to give you the bottom line. The pacer rep had to call in and ask about things because she didn't know the things she was finding during the pacer check. When she did the interrogation a warning came up about my lead, indicating a problem with it, and the same setting that had changed prior that indicated a problem with the lead had changed again. She changed a setting on my pacer so that it automatically fires for every beat, which is supposed to prevent my heart from pausing, the only issue I have with that is that she didn't fix what was causing the pausing of my heartbeat. She saw from the interrogation that one of my leads does have something wrong with it, but instead of dealing with that she basically just tried to get around the symptom without fixing what was causing the symptom. So we know that one of my leads is broken, that we saw very clearly, now it is just a matter of what is to be done about it. Even though technically my heart shouldn't pause anymore (although I am still having lots of arrhthmias and ectopy) we still haven't fixed the problem that was causing the pauses!!! eerrrrrgggghhhh?!?!!?!? Frustration!!!!!! And, we don’t know how fast the lead is degrading, so we still have to keep up the extensive monitoring because we don’t know when the lead will give out completely, and if this goes on too long and we actually get to the point that it gives out completely there will be nothing to keep my heart beating.

So, this is all so very frustrating, BIG TIME!! Please, please be praying for swift action from Dr. 32. Pray that he actually talks to the CV surgeon today and pray that together they will come up with a plan for how to replace the leads. Please pray that once this plan is laid out that it will be followed so that everything is taken care of as quickly as possible. Two weeks have gone by with little action, and though we have to be very careful to make sure absolutely every little thing is in place before we go into such a big ordeal, it kills me that things are moving so slowly. I know God must have been saving me from something awful that would have happened if we had just jumped into it, but please pray that every day this week will count in some way action-wise with the people involved.

It would be great if there were some way to replace the epicardial leads without having to crack my sternum again, I already have it wired together now, and I won’t survive it happening again. But if what Dr. 32 is suggesting, using thorascopes, is possible, that may be a way to get around the huge infection issues that come with endovascular leads, which he is adamantly against placing. Another thing we need prayer for (as if this list were not long enough already) is that it is very difficult to get a hold of Dr. 32 – his staff doesn’t pass on our messages and every call we ask to talk to him and we never hear anything back other than “we need to see you in the office”, as if 40 miles to his office and back, with a waiting room wait and everything else included in a dr.’s appt. would be possible in my status. Please pray that a way would be made for easier communication with this dr., because that is one of the things that causes such big delays, not being to talk with him as to what needs to be done.

As frustrating as it is I know God has a plan, and that His timing is perfect. And though this is such a scary thing I know He is sustaining me and my family. I am so far beyond the end of myself both physically and mentally/emotionally, and I just don’t know how much longer I can endure such daily stress. Because I am unable to handle all this I know that God is the ONE carrying me right now. Things are hard, and we just need your prayers to get through this. Also, Grammy and Buppa arrived today after driving across the country from Maine, so we praise God for their safe arrival and also more prayers as we start getting Grammy’s brain surgery set up.

The song below was written by my friend Kristie Braselton, who presented me with the words for my birthday one year with a letter that said it would be on her next album. She also said that she wrote it one night after reading one of my journal entries, and it has been a song that has really meant a lot to me and really echoes what is in my heart and head. I hope the words will be as much of an encouragement to you as they have been to me. This song is called Faith Without Fire, and it is on Kristie’s “Composition” CD.

Faith Without Fire

She checked in with Christmas just around the ‘bend
And now the leaves are colored fall
She knows each nurse by name and
They do their best to ease the pain
But still no answers have come

But somehow in the suffering
She says “it is well with my soul”
And she knows what it truly is
To trust in Christ alone

Chorus:
Faith isn’t faith without fire
And hope’s more than wishful desires
What will remain through the heat and the flame?
Faith isn’t faith without fire

Often we can’t see the reason for the suffering
Or the purpose in the pain
Like the darkest skies giving stars their brightest shine
So His grace is magnified

Would you trust Him in your hunger if the famine never came?
Would you run to Him for shelter if you never knew the rain?

(chorus)

Jesus never said that it’d be easy to believe
He said the road you walk is narrow
And it will cost you everything

(chorus)

Thank you again for enduring another very long update. There is just so much information because this is such a complex situation. Sometimes it feels like this may not really be happening, because things are moving so slowly for the urgency, like I’m in a dream (more like nightmere) rather than reality. It would be nice to focus on the nice things to come, like Sean’s wedding, and my 24th birthday on October 4, so I’m praying this will all be dealt with swiftly. Oh yeah, and I’m still having the bleeding in my gut and the severe belly pain to go with it, that still has not been dealt with either since the cardiac situation is so precarious. I should be hearing from my CR surgeon soon, but he is out on holiday for now. But when he gets back hopefully he’ll be able to do the upper and lower endoscopies and be able to figure that out. How those procedures will fit in timing-wise with the cardiac stuff I don’t know, but I will also be needing another transfusion soon, and it would be nice to just have that while I’m admitted for heart surgery, rather than having to make a separate trip to the hospital. Also, IVIG is coming up soon, and last night I started showing signs of a systemic infection. We did cultures today to be proactive, but I really hope I’m not brewing something. There is just too much other stuff going on. Yikes!

With so many complex and serious things going on I just wanted you to know how your prayers and support are getting all of us through each day. Nothing that goes on would ever make me forget you all, and I will forever be grateful and appreciative of you guys. I know I always say this but your notes in the guestbook help keep me pushing and are such a source of encouragement. I hope things are going well with you all!

All my love,
Bonnie

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Tuesday, September 18, 2007 7:38 PM CDT

Okay, I will update you on my medical stuff in a bit, but I first wanted to tell you about something pretty exciting that has been in the works for a while. There is a frozen yogurt shop in Chandler (on McQueen and Ray, between Rosati's and Safeway) called the Golden Spoon and tomorrow, Wednesday the 19th, they will be donating all the proceeds from the day to my fund for medical bills and medically related stuff. So, if you are in the greater Phoenix metro area tomorrow head on down and get some "fro yo" (which is what my Mummy calls frozen yogurt:-). I have heard it is really good and it goes for a good cause. Also, it happens to be "Mitochondrial Disease Week" and the purpose is jointly to raise funds but also raise awareness of the disease. It is completely divinely guided that this week turned out to be mito week, because all this was planned awhile back and we just found out it was mito week last Thursday.

Also, if you live in AZ please watch KTVK (which is channel 3 in Phoenix metro area) news at 8pm, because they are doing a story on me to raise awareness of mito and get the word out about the event tomorrow. I just finished the interview earlier this afternoon and only then found out what time it was, otherwise I would have mentioned it sooner. The reporter also said they may go live from Golden Spoon periodically throughout the day tomorrow, so keep an eye out throughout the day on channel 3. Also, the Arizona Republic did a story, also to raise awareness of mito and let people know about the event at Golden Spoon, and it ran in today's paper in the Community section (here is the link: http://www.azcentral.com/news/articles/0918mr-bonnie0919.html#). I hadn't been told when it was going to run (although I did ask), otherwise I also would have mentioned this, but I saw it and so I'm letting you know now. For those of you out of the state (or country:-), please be praying that God will use these stories and event not only to help us pay off some of our extremely large and many medical bills, and not only to raise awareness about mitochondrial disease (although it is going to be so great to let people know about the disease) but that it would also point people to God. A lot of the mito patients I know would not be able to live with this disease if they didn't have a strong faith in the Lord. So please just be praying for an extremely successful event in all those areas.

I want to say a big, big thank you to Colleen, my dear friend who put this event together and who arranged the interviews. She and I have been friends for a while, and she has the most energy of anyone I've ever known, and I have shared with her my passion and desire to be able to raise awareness for mito, but also that I have been unable to because I am so weak and sick. So I am so excited and honored that she has given me her energy in putting all this together, and that she has championed this cause. She is a special girl whom God is definitely using.

I am too exhausted to write too much about my medical situation right now, but definitely wanted to let as many people as I could know about the stuff happening tonight and tomorrow. The current situation is unfathomable, I could tell you what is going on but you might not believe me - it is that insane. I could be having heart surgery tomorrow, but I may not. The stakes are too high to not try to figure out beforehand, but due to dr.'s not acting quickly things have gotten really crazy. It shouldn't be this hard! We, as patient and family, should not be having to do all this work that the dr.'s should be doing for us!!! Please pray, as I know you already are, we need wisdom and guidance on a level that we have never before seen. My dr.'s need wisdom and guidance and quick action on a level we have never before seen. We are on the verge of completely losing it over here, the situation is that desperate. I can't imagine what God has planned, and it doesn't make sense right now. And even though it doesn't, I still have to trust that He knows best, and that He can carry us through even this most outrageous time. The following song has kept coming to my heart as I have been dealing with stuff the last few days, almost as if God were placing this reminder in my heart of what His other Child Jesus went through:

YOUR ONLY SON, NO SIN TO HIDE
BUT YOU HAVE SENT HIM
FROM YOUR SIDE
TO WALK UPON THIS GUILTY SOD
AND TO BECOME THE LAMB OF GOD

YOUR GIFT OF LOVE THEY CRUCIFIED
THEY LAUGHED AND SCORNED HIM
AS HE DIED
THE HUMBLE KING THEY NAMED A FRAUD
AND SACRIFICED THE LAMB OF GOD

O LAMB OF GOD SWEET LAMB OF GOD
I LOVE THE HOLY LAMB OF GOD
O WASH ME IN YOUR PRECIOUS BLOOD
MY JESUS CHRIST THE LAMB OF GOD

I WAS SO LOST I SHOULD HAVE DIED
BUT YOU HAVE BROUGHT ME TO
YOUR SIDE
TO BE LEAD BY YOUR STAFF AND ROD
AND TO BE CALLED A LAMB OF GOD

O LAMB OF GOD SWEET LAMB OF GOD
I LOVE THE HOLY LAMB OF GOD
O WASH ME IN YOUR PRECIOUS BLOOD
TILL I AM JUST A LAMB OF GOD

I don't know what is ahead, but as soon as I do I will let you know. At least when I am a bit stronger I will tell the horrid tale of what has been going on, but until then please just keep praying and letting us know through the guestbook how God is using this. The notes have been such a source of strength, I can't even tell you, and the encouragement has kept us going.

I love you all so much,
Bonnie

---

Tuesday, September 18, 2007 4:06 AM CDT

I promise I will update later today, I have been so very exhausted and getting much weaker with my heart remaining to be in critical condition. Again, as usual here, we are having issues with dr.'s, and there has been so much action on our part yet producing such little action on theirs. So I will let you know more very soon. Please continue your prayers and guestbook entries, they have been the only thing getting us through this last week but have given me much strength and encouragement. :-)

All my love,
Bonnie

---

Tuesday, September 11, 2007 3:56 AM CDT

Okay, I did not expect any of this... but here goes. The plan was to go into the ER to be admitted last night because my heart still kept stopping and having arrhythmias. The monitor that we borrowed would alarm when something was wrong and then print out an EKG strip to document it. After coming home from the ER about 5 or 6pm, I had so many cardiac events that the monitor ran out of the EKG paper by 11pm (it's a huge roll, but I just had so many events). We had to make a smart decision about what to do, because just going in without thinking through things would make things harder. I'm not like most people who can just go into the hospital and have things taken care of; there are so many issues and the dr.'s here don't know anything about mito and are less likely to listen to other people that do. The other big concern was my home health situation, because we have been working with this one company for a few years and they have gotten used to us and we have everything set up with a very specific yet complicated regime of daily meds and IV fluids. Here, once you are admitted to the hospital your home health account gets canceled and upon discharge from the hospital you have to completely restart everything. Another concern was that the one cardiologist that didn't think my pacemaker had anything to do with my current cardiac problems when I was in the ER yesterday was still on call, and since it was about midnight if I were to go into the ER right then I would have been admitted under him, and him leading my care would not be a good thing. We were thinking I could just be observed in the ER until my cardiac electrophysiologist (pacemaker dr.) came on in the morning, but my dad worked as an ER nurse for over 15 years and he said there was no way they would do that. So we decided to keep having my parents take turns watching the cardiac monitor and we'd go into the hospital in the morning.

So we called the EP dr. (electrophysiologist) to tell him what was going on, and fully expected him to admit me right away since this is an emergency situation that was likely due to pacemaker malfunction. We also called my internist to keep him in the loop because it is likely that we would need his cooperation in making sure my admission orders stay consistent with what they are now. We talked back and forth with the EP dr.'s nurse, and she said he was going back and forth with the Medtronic people to try and figure out what was happening with me. It was very frustrating because we placed the first calls early in the morning and didn't get any direction back from them until late in the afternoon. Meanwhile I was still having these serious cardiac events and having chest pain, and we weren't sure if my heart would give out altogether, and I really felt I needed to be in a controlled, monitored environment. The direction we had waited so long to receive back was nothing I could have ever wanted to hear.

When the EP dr.'s office finally called back with what he wanted to say the determination was that one of my pacemaker leads was busted and that it needed to be replaced. The dr. wanted me to make a decision and call him back right away as to whether I wanted to have them replaced with epicardial leads like I have currently, or have them replaced endovascularly like I have had previously. Endovascular leads are threaded into the heart from the inside through the big vessels that feed into and out of the heart, and I have had those in the past but that 11 month admission I had two years ago was constant sepsis and endocarditis because those leads kept getting infected and I kept getting vegitation both on the leads but which also spread from them to my tricuspid valve. Any non-human tissue devices inside your body are magnets for bacteria, like metals and plastics, and those leads were constantly infected which made me constantly septic and just really sick. That entire year I was admitted because they couldn't keep the pacemaker leads from getting infected, and that's why I ended up having open heart surgery, to remove the leads from inside the vascular system and they were placed on the outside of my heart walls, which are termed epicardial leads. So I am not thrilled about the idea of replacing my pacemaker leads endovascularly because I have a feeling the same thing will start happening again, as I have not had an endocarditis since getting the epicardial leads, and since I am a lot sicker and weaker than I was then. So I know it will be worse now and as this disease progresses I am going to continue to get weaker, and sicker, and I already have major issues battling infections, and that is just going to continue to get worse, especially with endovascular pacer leads.

However, the only way to place epicardial leads is with open heart surgery. So when the dr. called late in the afternoon wanting me to make a decision and call him back with my answer the choice was either open heart surgery, or regular heart surgery, which is still quite invasive, and any surgery is hard to recover from with mito, especially with a mito case as advanced and as severe as mine is. Having the open heart surgery and placing the leads epicardialy would give me less infection problems in the long run, but I may not survive an open heart surgery at this point, or if I do I may not come out of it as anything more than a veggie. And as if this situation didn't suck enough, Sean's wedding is less than two months away, with open heart surgery I would certainly miss it, but even with regular heart surgery I may not recover in time.

So I am basically left with no good options, and I certainly could not make this decision in an hour. I need to talk with three people for sure to help me decide. One is my internist just to get him in the loop, because he never got back to us and I know for sure he is not expecting anything this horrible to be happening right now. I'm sure he'll have something to say about the situation, I just don't know if I'll like or agree with it. The second person is another EP dr. who did one of the major heart surgeries on me two years ago. It wasn't the open heart surgery but it was one of the big ones a month or so before it. He is kind of known as the pacer guru in AZ and is on the cutting edge of what's new and I think he could probably give us some input. I haven't seen him since back then and so we talked to him today but he needs to be updated on my situation as a whole before he can intelligently contribute. The third person is one of my mito dr.'s in Boston, who is THE mito guru. He's been on top of my situation and I need him to tell me what he thinks I could survive and how long he things I have left to live regardless. Last summer (before the fungemia that severely impacted my daily abilities and progressed the disease a long way in a short time) he told me that he thought I had six months to six years left to live. I was in a lot better shape when he said that compared to where I am now, so I need an updated figure to help me decide. We called him today but since we found out late in the afternoon and Boston is three hours ahead he was already gone. But we talked to the covering dr. and she was going to call him at home and possibly have him call us from home. We haven't heard from him yet so hopefully we will tomorrow at the latest.

If he thinks I could survive the open heart surgery and that I could have several years left than maybe it would be worth it. But if I only have maybe a year or less then I would be spending all that time recovering from open heart surgery, if I even could recover, and that would not be worth it. Either way is going to impact my longevity and quality of life, because open heart has all the implications I've mentioned, but even the regular heart surgery comes with such huge infection complications that will affect how long I can survive. Each infection I get now I always wonder if this is the one that will take me, but that will be so much more so with the leads being inside my blood stream.

So I don't know what to do at this point, and I am very upset that this is happening. I so do not want to be going through this right now, and I just do not understand why I always have to have such big huge things. I do have a very severe case of mito, but there are a lot of people that are very functional with the disease, and have the regular stuff to go through and maybe occasionally something big like this. But my whole life has been one huge surgery or one huge infection after another. Each day has been tough to fight through, and I am weary from the battle, but I have been glad to be alive. I have nothing in me to get through this time, and if I do get through it will only be because of God solely carrying me, and you all will be witnesses to that.

Whatever is ahead, even though I don't like it, I have to know that it is from God and that He is the ONE in control of everything that is happening to me. Nothing gets to me unless it first passes through Him, and if He allows it I have to know that He will get me through it and that there is purpose in it, to bring Him glory and honor and to point others to His throne. I am His humble servant, and that's not always an easy job, but for the joy that He has set before me and placed in my heart I will endure what is ahead.

I cannot get through this without your prayers, and I'm sure the specific requests are pretty obvious but I need discernment in making this decision, and peace for all of us. Some people make the incorrect conclusion that the more you go through something the easier it gets, but unfortunately it is just the opposite because the more you go through something the more you know what to expect each time. And for me I have been through so many surgeries, and each one gets harder and harder because I know the pain I am about to experience, and I know the struggle with recovery. And it gets harder to consent to that because I know how badly it's going to suck getting through the next weeks/months. Plus, again, the difficulty with staff and dr.'s that comes with being admitted with no knowledge of my disease. Just pray for everything, I am sure there is nothing that you guys could think of to pray for that we don't need.

I'll try to update as much as I can, but please realize I am feeling really badly and it's hard to update often with so much information (as you can see with this tremendously long update). I may have my Mummy start updating at some point, but if there is not an update here make sure to check the guestbook because we may have someone post something there if we can't. But please also sign the guestbook because I need as much encouragement as I can get right now and it helps when you're going through a really tough time to know how God is using it, it helps validate that God is using it which makes it easier to endure (much harder when you think nothing is coming from it). But I can't know that God is using me in the situation unless people actually tell me, and the guestbook is a good tool for that.

Please also be praying for everything before surgery. I am still at home with my parents taking turns watching the monitor and making sure I'm still alive (even all through the night), because the EP dr. didn't make a decision about where to admit me since he isn't sure which surgery is going to be done. My heart is only functioning on one pacer lead right now since the other one is broken/malfunctioning, and since I am completely pacer dependent that makes my situation very serious and scary to only have one lead working. I have no idea what tomorrow will bring, but we are trying to not freak out too much, although in a lot of ways that is sort of unavoidable, but we will see.

My deepest, sincerest love to you all,
Bonnie

---

Monday, September 10, 2007 2:35 AM CDT

I don't have time to write much but I'll try to get you all up to date. I spent the day in the ER today (Sunday), because for the previous 24 hours my heart kept stopping (for about 2-3 seconds at a time, on and off all throughout the day) and having lots of arrhythmias. I was having lots of chest pain and was basically always on the verge of passing out (that awful feeling in your head and body right before losing consciousness, but all day long). We were thinking about going into the ER Saturday night, but there is just too much of a risk for me to admitted to the hospitals here because the doctors don't know what to do. But I was clearly becoming too unstable to stay at home. Dad ended up borrowing a heart monitor to watch me at home, and all throughout the night my heart kept having big pauses followed by extra beats. In the morning it was clear we needed to go in and so we did. After going through the usual stuff to get settled the Medtronic tech came to check what was going on with my pacemaker, since everyone suspected there was a problem with it that was causing my heart to stop (seeing as I am pacemaker dependent, all my heartbeats, or lack of, originate from my pacemaker). The tech said that one of my settings had changed, but didn't know how or why, and she told us that she couldn't account for why my heart was stopping. She changed the setting back, and left us saying she didn't really understand what was going on or why. But she told the ER dr. that the change in setting was likely responsible for pauses in my heartbeats and that now that it was fixed I'd be fine. I have no idea she told each of us two different things, but they then said it would be up to me whether to stay and be admitted to be observed (and since the problem should have been fixed there was nothing else to be done) or I could go home and my parents could watch me there. I was nervous to be admitted because of all the problems we have with the dr.'s here messing up the regime my Boston dr.'s have put in place (and their general lack of knowledge regarding mito overall) but I was also nervous to go home because we had no idea what was causing the problem, nothing had been done to fix it, and we didn't know anything new basically.

I asked for a cardiologist's opinion because I was basically stuck with two bad options, and thought a heart guy could give me the info I needed to make a decision. The first cardiologist they got wouldn't contribute to the case, and the second one they got said he didn't think the heart problem would be related to my pacemaker at all. WHAT!?!?!? Does that make sense?!?! I kept thinking, how could it not be related?!?!? Anywho, since those dr.'s would have been the ones admitting me I decided that even though it was risky to go home that it would be better than letting those guys lead my care. The heart monitor my dad had borrowed was still at home and we have been monitoring since, and I am still having the heart pauses where my heart just stops and I basically pass out, with lots of arrhythmias in between. I am having a lot of chest pain and just not doing well. Putting the setting back to where it should have been obviously didn't make a difference and I am still having the big problems. So unfortunately I do have to go back to the hospital and likely be admitted because we can't seem to figure out what it causing this. I will write more when I know more but please be praying so hard because I have only had problematic admissions here, and since none of the dr.'s know what to do we need all your prayers for them to be open to working with my disease and be capable of dealing with all the complexities it brings.

Also, none of this has to do with my belly bleeding that is still going on, but I am still having big problems with that too. My GI here refused to do anything but my Boston GI still wanted diagnostics done, both upper and lower endoscopies and a tagged red cell nuc. scan. We went around him with my internist to get the nuc. scan and had that done Thurs. at the hospital. They only had me under the camera for an hour (which usually should be up to 2.5 hours) and with a chronic bleed I had a feeling that wouldn't be long enough for the blood cells tagged with a radioactive isotope to accumulate in my intestine. This test was a long shot to show anything anyway, since I clearly have a chronic bleed and not a huge acute one (and that test usually only shows the really big acute bleeds, sometimes not even that, not a very comprehensive test). And even though it wasn't likely to show anything it still needed to be done just in case. Of course after an hour it came back negative but as we were leaving the tech said that if I bled a lot more to come back since the tagged cells would still show up for 24 hours. Something in me was just convinced I needed to come back, God must have put it there, because when I did go back the next morning it did show something. They couldn't figure out if the bleeding was in my kidney or a loop of bowel, but seeing as there are no symptoms and no reason for a kidney bleed it was more suggestive of a bleed in my small bowel. We have not received the official read on that study, but it is still certainly an ongoing big issue for me. The pain just gets harder and harder to deal with and it is just overwhelmingly painful.

So, two big issues, and it no longer looks as if we can stave off hospital admission. There are no good options here, and so I really need everyone's prayers because that is the only way I will be able to get through this. Please pray for my parents too, this is hard on them as well, they do such a good job keeping me stable at home and they are turning over care to people who don't understand my condition a tenth as well as they do. This is a scary time for us, both having me unstable at home as we get ready to go back into the hospital, but the hospital is just as scary of a place because of all I have mentioned and more. We need a miracle, and God can certainly do that. Please pray for peace, good care, understanding, and that we will be overwhelmed by how God is about to take care of us.

My dearest love to you all,
Bonnie

---

Wednesday, August 1, 2007 2:03 AM CDT

Dear Family and Friends,

Today I am opening my computer for the first time in a long time for the specific purpose of writing to you. I usually have my computer on all day every day, but that not happening for so long is a testament to how badly I have been doing. As I wrote previously I was more anemic than I had ever been when I had my last blood transfusion, and that I had gotten a double fungal infection to go along with it. Well my blood counts never reached a normal level after the transfusion; they were still below normal even after receiving two units of packed cells. Also, the cultures ended up speciating two different types of Candida, one in my throat and a different type in my urine (UTI/kidney infection which I'm still on Caspo for).

About two or so weeks ago the belly pain I have been having reached an unbearable level. I have been dealing with this belly pain for the last 6-8 months; it started as a sharp pain that would dissipate every few weeks, and gradually has increased in severity and frequency until it has become unbearable, constant pain. I tried to deal with it for a while, but about two weeks ago I just couldn't take it any more and finally had to see a doctor. I have not seen any of my doctors since returning from Boston last fall because none of my AZ docs know what to do with me, and they don't take the time to try and understand my disease (they have no time due to the shortage of doctors in AZ). I have absolutely no resources here to help deal with the mito, and while the docs in Boston have kept in communication with me there is only so much they can do from across the country. The other reason is that I just have not been physically capable of making the appointments, since I have been plagued with ongoing severe infections and other complications. There is such a shortage of physicians here in Arizona, and they are so overrun with patients, that one appointment takes hours (3-4 hours in waiting sometimes before even seeing the Dr.). On a good day I can sit up for maybe a half hour, so you can imagine the trouble I have with that type of outing. When I hear from friends across the country with various medical issues I am often amazed at the resources they have compared to here, there is such a difference even in just very basic ways.

But I did finally have to see someone, because my philosophy is that even though I have a terminal disease and was told last summer that I may only have five months to a few years left, that if there is something wrong that we can fix to fix it and at least try to prolong my life and make it as comfortable as possible (because constant, unbearable belly pain does not meet my definition of "comfortable"). My vision is to be aggressive in diagnostics to try and find out what the problem is, and then once we know what it is to then determine how aggressive is it reasonable in treatment. And I know full well that due to the crazy and mysterious nature of mitochondrial disease that even after going through diagnostics to try and find the problem that we may not be able to, some things are unknown or unrecognizable. But we at least need to try.

I was going to go to the ER and be admitted to the hospital, because as much as I detest it I was feeling so horribly. And my parents felt the same way, but we talked and thought about it first and realized, that based on past experiences and present knowledge, we decided against admission because the docs in the hospital have no idea what to do or how to treat me and if I were admitted we would be foolishly handing over complete control of my care to them. At least now my orders are from the Boston docs (since that is where I was last admitted) and my parents, who know more than the docs here after hearing the info from Boston docs, can carry those orders out. Plus, we have experienced many nurses that do not use good sterile technique, and because my immunity status is so bad I get really sick with even minor sterile technique breaks. So that is another thing that my parents can take care of that would be detrimental if admitted. So against normal course of action we decided going into the hospital would not be a good idea right now.

So instead I went and saw my internal med Dr. and he really didn't do anything other than order an x-ray, which really frustrated me, because every day that goes by means more horrendous pain, and here he was just blowing me off. Since he wasn't doing anything I had my parents set up an appointment with my GI guy on our own. I also stopped eating at this point because my belly blew up and was acting like it does when I have an ileus/pseudo-obstruction in addition to whatever was causing the pain. After my Thursday appt. with my internist I had to wait through the whole weekend until my parents could call the GI on Monday. My Mummy and I have what most people would call "bad luck", but we don't believe in luck so we'd have to call it something else, but basically we can't just seem to have the one problem, there's always extra stuff that affects it. So Monday my parents called and turns out the GI was leaving for vacation later that week, but he did slip me in on Wednesday, even though in such pain that still felt like so far away. Wednesday I went to see him and found out that there was a death with a close family member of his, so he would be leaving for his vacation early basically right after my appt.

I hadn't seen him in over a year, but caught him up on the situation and when he seemed unsure on what to do, I told him my vision for how I wanted to be treated. Fortunately he seemed to agree, and set up a capsule study for the next day, and CT enterography for the day after that. Even though he wouldn't be there he set up to have one of his partners read the studies. I went in and swallowed the pill camera so it could track down my small intestine and video tape it, which went pretty smoothly and we are still awaiting the results. The next day (Friday) I had to go into the hospital for another transfusion anyway and had the CT enterography while I was there. The previous transfusion was only three weeks prior, and in the interim my hemoglobin dropped an entire point each week. The increase in internal bleeding and the increase in belly pain seemed to coincide so we think they may be related.

Friday was a really tough day being at the hospital, and every day that goes by is very tough too. We are still waiting for all the results, but I will likely also be having an upper and lower endoscopy as well. Please be praying as we all go through this. This is the point we reached when we could no longer keep things stable at home, but it's too dangerous to go into the hospital as well. The added sting in addition to the pain is that my parents and I were supposed to be vacationing in Maine right now. Sean and Lisa are there, and I really wanted to be there with them especially since it's Lisa's first time there. I was just so looking forward to hanging out with them and seeing the ocean, and it was potentially going to be my last time able to visit there. We knew for a while ahead of time that I may not be stable enough to go, but I really wanted to be there and I am so frustrated that I'm not. Plus, I'm also keeping my parents from being able to go to since they have to take care of me.

It's hard, because with all this going on, and pain especially will bring it on, you start thinking "why is this happening?" especially why now when there is so much I wanted to be doing. And not just that, but you can start to wonder, with a God that loved me enough to save me for all eternity, why He isn't saving me from this. Especially the world would look at me and find it completely incongruent that a God that loves me as His own precious child would allow me to experience everything I have in life. But a very loving God DOES LOVE ME! In spite of it all, it's not that God doesn't love me, or that He couldn't save me from this, but in fact, He is the ONE carrying me through it all. I am hurting, but He feels my pain in a way that no one else can, and when I cry He is there crying with me. I only pray that it could be said of me, that "among God's churches we boast about your perseverance and faith in all the persecutions and trials you are enduring" (2 Thessalonians 1:4), because it won't have been I who did it, but God accomplishing it Himself in me.

So, things are really tough right now, the pain is so bad and it's hard dealing with it all. I'm sorry this update is so long, but I wanted to keep you up on everything. I need to go rest now, but I hope you all are enjoying your summer.

My love to you all,
Bonnie

To my medically challenged friends-
Aly, Malisa, Heather, Kristina, Adrienne, Ashley, Kristie, Thorell Family, and Janet for Allison:

I love you guys so much and have such a desire to communicate with you and keep up touch. I love receiving emails from you and feel so badly that I haven't been able to respond or call. Please know, no matter what, how much I love you guys and think about you. We are all fighting, and I am so grateful that we can encourage and comfort each other. I love you guys so much and I just want you to know how much I appreciate you all. :-)

---

Friday, July 13, 2007 2:44 AM CDT

Bad news, sick again. I was more anemic than I've ever been before getting my blood transfusion, but there was more to why I was feeling so horrible. I basically slept all the time for the 3-4 days following the transfusion, and was frustrated that I didn't rebound the way I usually do after getting blood. One reason may have been that despite being transfused that my counts are still abnormally low. Going into the transfusion I was much lower than I usually am, but also the increase in GI bleeding has continued, so that is contributing as well. But since Friday, when I spent the day in the hospital getting the blood, I have felt really horrible, worse than I've felt in a really long time, and because of the symptoms we did urine and throat cultures. Both of those grew back with fungus in less than 24 hours, which is not a good sign, and so I'm back on the Caspo, even though I wasn't off it for very long at all. So I have thrush and a fungal UTI/kidney infection, but am feeling much worse than that, and based off my symptoms we suspect it also may be in my blood stream now. The treatment is the same so we decided not to do blood cultures, there wouldn't be any point, and it would be worse to lose the blood needed for cultures (I need all the blood I can keep since I'm losing it so fast).

So anyway, I just wanted to keep you all in the know. I am in a considerable amount of pain and am extremely weak. It's been so hard and it's just gotten harder, and I know my parents are as appreciative as I am for all your prayers. I will update more later.

My love to you all,
Bonnie

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Wednesday, July 4, 2007 3:32 AM CDT

Update - 3:45pm MST:

I just got my labs back from yesterday, and my blood counts are extremely low. I don't think they've ever been this low without a STAT blood transfusion ordered immediately. I have to wait until Friday to get transfused, and at the rate they've been dropping for the last week I worry how low they will go. Clearly my bleeding has picked up, but we still don't know where it is coming from. I appreciate all your prayers, thank you.





Update:
Well, some may think I have over done it with the patriotic display, but I do love our country and this is the time to celebrate it. There is just something about watching the fireworks on TV while the 1812 Overture plays that makes my heart swell with pride and gratitude, must be the canons. :-) I’ve spent most of the last several years in the hospital when Independence Day comes, and this year I’m hoping we’ll be able to see the fireworks from our house, but we don’t know yet. And this year Sean is away at boot camp after joining the Army last year (they have excellent benefits and support for medical students/residents). He also has a very deep and sincere sense of duty and patriotism, and I can’t wait to hear how he will be celebrating while away, Army style. :-)

Physically I’m still having a hard time, no news there. This “hard time” I’ve been having does not look like it will go away and instead seems to be another progression with the disease. I had my IVIG infusion on Friday, and only today was finally able to open my window shades and turn on the lights without getting too horrible of a headache, although it and the kidney pain were still ever present. My belly has been increasingly giving me more trouble, and so I’m not quite sure what to do with it. This past week I’ve also had more bleeding from inside, so the two could be connected. As I said previously my blood counts had dropped to the point of being symptomatic, and now I need to be transfused, so I’ll be going into the hospital on Friday for that.

As always I so appreciate your prayers, the past few weeks have been especially tough for some reason, not just physically but with other things in general (life, people, time, etc.). It would be nice if people who had tough diseases like mine didn’t have to deal with all that “life” stuff, but unfortunately we do. I hope you all have a terrific and safe holiday, and I hope you will all join me in praying for our country, our troops, and the rest of the world. I have included below one of my favorite hymns, which is so appropriate for today even though it was written in 1861, and it also has a lot of great doctrine in it. :-)

All my love,
Bonnie



Battle Hymn of the Republic

Mine eyes have seen the glory of the coming of the Lord;
He is trampling out the vintage where the grapes of wrath are stored;
He hath loosed the fateful lightning of His terrible swift sword;
His truth is marching on.
Glory! Glory! Hallelujah! Glory! Glory! Hallelujah!
Glory! Glory! Hallelujah! His truth is marching on.

I have seen Him in the watch fires of a hundred circling camps
They have builded Him an altar in the evening dews and damps;
I can read His righteous sentence by the dim and flaring lamps;
His day is marching on.
Glory! Glory! Hallelujah! Glory! Glory! Hallelujah!
Glory! Glory! Hallelujah! His day is marching on.

I have read a fiery Gospel writ in burnished rows of steel;
“As ye deal with My condemners, so with you My grace shall deal”;
Let the Hero, born of woman, crush the serpent with His heel,
Since God is marching on.
Glory! Glory! Hallelujah! Glory! Glory! Hallelujah!
Glory! Glory! Hallelujah! Since God is marching on.

He has sounded forth the trumpet that shall never call retreat;
He is sifting out the hearts of men before His judgment seat;
Oh, be swift, my soul, to answer Him! be jubilant, my feet;
Our God is marching on.
Glory! Glory! Hallelujah! Glory! Glory! Hallelujah!
Glory! Glory! Hallelujah! Our God is marching on.

In the beauty of the lilies Christ was born across the sea,
With a glory in His bosom that transfigures you and me:
As He died to make men holy, let us die to make men free;
While God is marching on.
Glory! Glory! Hallelujah! Glory! Glory! Hallelujah!
Glory! Glory! Hallelujah! While God is marching on.

He is coming like the glory of the morning on the wave,
He is Wisdom to the mighty, He is honor to the brave;
So the world shall be His footstool, and the soul of wrong His slave,
Our God is marching on.
Glory! Glory! Hallelujah! Glory! Glory! Hallelujah!
Glory! Glory! Hallelujah! Our God is marching on.

His Truth IS marching on!!!

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Monday, June 25, 2007 2:55 AM CDT

*new photos in the album*

Hello All,

Well, things aren’t letting up, the last week or so has been really tough. I’m still dealing with the affects of the dual bacteria/fungal infection (and still on the Caspo and Cipro), and then last week I started up with a pseudo-obstruction, so I have been dealing with a lot of belly pain, and the associated effects on nutrition and digestion along with it. Since my last update I also had an IVIG infusion and had to deal with those associated issues. My blood counts have now dropped to point that I am getting symptomatic, and I’ll probably need a transfusion sometime in the next few weeks. So put it all together and whadda ya got? A big, complicated mess of awfulness that is making life tough. In fact a week or so ago, while my parents were at work (when we have “Bonnie-sitters” staying with me in case of a fire or something) I actually had to call Dad to come home to help stabilize me because I started having rigors and was getting to that point where things could go from bad to worse in a flash. That was the start of the really rough week that I’ve been having. Anywho, so I’m still dealing with a lot of issues, not fun. This “momentary light affliction” feels permanent, long, and heavy, but in my head I know better it doesn’t even compare to what God has saved me from, and continues to get me through.

I had so wanted to make this announcement in a big, grandious way, something worthy of how much the people involved mean to me, but circumstances being what they are, and not wanting to delay further, it’ll have to be great just like this. My big brother Sean, who I love and care about so much, and my best friend Lisa, who I love and care about so much, are going to marry each other!!! I am so happy for both of them. They will get married here in November, and then live here as Sean continues medical school and as Lisa has a job as a trauma nurse that she starts in the fall. I am honored and delighted to have been asked to be in the wedding, and that is my next big goal to get to. I need those goals to fight for, and if you could be praying with me that I would make it to be there and for both families involved as we plan and get ready.

Mummy had mentioned this to me a while ago and I finally remembered to include it. She thought it would be cool if people could send me pictures so I could at least see them, even if they were too busy or unavailable to visit. So don’t be shy, no matter who you are I’d love to get some photos (either by email or snail mail). If you’re reading this you must know me from somewhere, and I’d love to feel more connected with the outside world through the pictures.

Also, there is a search engine that you can use that will give a penny per search to mitochondrial disease groups. They have quite a few organizations that they give to, but if you go to www.goodsearch.com on the first page you can designate which group you want the money to go to. There are two mito groups that you can specify, the first one is the United Mitochondrial Disease Foundation (UMDF) and the second one is the Mitochondrial Disease Action Committee (MDAC). I love Google as much as the next person, but this is one way you can contribute to mito patients and their families doing what you already do everyday.

Thanks for your patience, I know this was a long update. It took me several days to write, but there is more inside me and so I hope I’ll be able to write more soon. There is just a lot going on in my heart and head in relation to life and people and everything and I feel burdened to share it, I just don’t have the energy to quite yet. So more to come. :-)

I love you all so much and I genuinely hope you all are doing well. I think about you all probably more than you realize, and my prayers are for you as well. I hope you have a terrific week!!

All my love,
Bonnie

But drops of grief can ne’er repay
The debt of love I owe:
Here, Lord, I give my self away
’Tis all that I can do.

At the cross, at the cross where I first saw the light,
And the burden of my heart rolled away,
It was there by faith I received my sight,
And now I am happy all the day!

---

Thursday, June 7, 2007 0:32 AM CDT

Monday we found out that the culture grew out a bacteria, Klebsiella, which I seem to get quite often. IV Cipro has been started, in addition to the IV Caspo I'm already on. So I have both a bacterial and fungal kidney infection, no wonder I'm feeling so awful. I'm also still maxed out on Tylenol and Ibuprofen, but am still having fevers, uurrgghhhh. So frustrating. I am really hoping all these meds kick in soon, because I am having a really hard time and am going through a bout of discouragement. Fundamentally I still trust that God is using me, and that this is His perfect plan for my life, and I am so grateful I have a Savior that loves me as much as He does. It's just the surface, worldly stuff that gets in the way and hurts (in addition to the physical pain). Praise God that this is not all there is. :-)

Thanks so much to the people who signed my guestbook, please keep the notes coming. The notes mean more to me than you could possibly realize. I think of you guys all the time, and keep you in my prayers.

My love to you all,
Bonnie

P.S. Stay tuned for the "good news" update next week. Just not quite feeling up for it yet and I want it to be perfect. :-)

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Saturday, June 2, 2007 3:27 AM CDT

I'm having a really hard time right now, another bad infection. I've been on Caspo for over a week now and am still getting fevers, despite maxing out on Tylenol and Ibuprofen. It started as a UTI/kidney type infection (and a urine culture showed fungus), but I am still feeling really horrible despite the Caspo, not to mention the fevers, so a complete set of cultures was done today (two sets of blood and another urine) plus more blood work and another UA. I have been having a hard time fighting through this, the endless cycle of problems for so many years now is so wearing on me.

I have some news to share, but I am feeling too badly right now to give it the joyful announcement it deserves. For the people that know what I am talking about please refrain from mentioning it in the guestbook until I get a chance to write about it (which hopefully won't be too much longer), as it is something that I have really been looking forward to sharing, and there aren't too many things like that in my life. Thanks for your understanding.

Please pray for me, I feel so weak and broken. For those of you to whom I owe emails, I have every intention of writing, it's just taking everything I have to get through each day. I just need a little more time, and I gratefully thank you for your understanding.

I hope you all are doing well, and I will update with more news as soon as I can.

All my love,
Bonnie

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Friday, May 11, 2007 1:45 AM CDT

Hi All,

Mummy is finally getting over her pneumonia, and I'm still struggling trying to not catch it or anything else. So despite still having the problems with my port, the clot around it, and all those issues I still haven't been able to get an ultrasound for it along with the dye study to see if we could figure out what exactly was going on. With there being no change in that condition though it does still need to be dealt with, but like with everything else even though there are acute, urgent problems, because of my physical status they can't always be taken care as quickly as they need to be.

My blood counts have dropped very low again, and that can't wait, so I'm going into the hospital for blood transfusions tomorrow and will be there the whole day. Since I still haven't physically been able to go to see my docs, and still have my huge list of diagnostics that needs to be completed, we arranged so that I could at least have an echo (heart ultrasound) while I'm getting transfused. It's been awhile since my last one (which was in Boston) and with all my heart issues and having had valve surgery I really should be getting them more often. A big thank to Mummy for making the phone calls to set that up. So tomorrow will be an extremely long day for me, especially since I'm in worse condition anyway with the depleted blood counts, so I would really appreciate your prayers to make it through without major repercussions. It would be nice if I didn't have to go in so often for these transfusions, but I'm bleeding internally in my GI tract and my bone marrow's production of blood cells is low, plus I can't take the meds that help boost red blood cells because it interferes with my clotting issues, and that's another issue that affects another, and on and on and on. The only thing I am looking forward to tomorrow is that it's Friday and my favorite dog therapy team works on Fridays, so I called her tonight to make sure she knew I'd be at the hospital. Also, I may see some of the nurses that have taken care of me forever (the ones I call my “home girls”), depending on who is on, so that may be a bright spot as well. I'm trying not to focus on the negative and keep remembering the good things! :-)

I'll write more later, but I need to at least try and sleep before going in tomorrow. I'm still having a really hard time getting any sleep, and I'll write more about that next time, but it's really affecting things more and more adversely.

I know I've said this before but I really can't thank you guys enough for thinking about me, signing my guestbook, and all your prayers on behalf of me and my family. I hope you all have a terrific week, and God bless.

All my love,
Bonnie

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Sunday, April 22, 2007 11:20 PM CDT

****Bonnie is having a bad reaction to her IVIG, and is experiencing the meningitis type headache and neck/spine pain. She also has a fever, and would appreciate prayer on her behalf. She has had little sleep due to the pain, and her pain meds have been increased in hopes of providing a little respite.

The testing for the port-a-cath problems has been postponed until this week.

Thanks for your continued love, prayers, and support,
Lyn (AKA Mummy)



Monday, April 16, 2007 4:20 AM CDT

Well, it has been a while since I last wrote an update, and a whole bunch has happened. First of all, we are now home! There were so many delays, but we finally moved in the day before Easter. Even though it was a hectic weekend it was kind of neat that it was on Resurrection Day, because after so many years of struggle and suffering, it was sort of a resurrection for us to, to finally have a nice place to live. The best part by far, has been my parents not having to go up and down stairs every time I need something. My fluid runs out, then can just go into the next room, I need a drink of water, same thing. No more running up and down stairs getting worn out for my parents!

I’m still sick, unfortunately it didn’t cure that, :-) but we are now in a lovely home that so many people worked so hard on, and having a more accessibly convenient home is making my parents life easier for sure. I still spend most of my time in bed, but now I can look out my window and see pretty trees and am more in the middle of things (my room is literally in the center of the house, sort of) as opposed to being stuck on one floor, alone, like I used to. We’ve been here about a week, and there have been a few times that I’ve been able to be helped into my chair and then gone out and laid down on the couch in the living room, which probably doesn’t sound like too big of a deal, and which to most people wouldn’t be, but for the last two years I’ve either been confined to one room in our house, or one hospital room at whatever hospital. So even though I’m still bed bound, to be able to go into even one other room is such a big deal for me. I’ve seen furniture of ours that I haven’t seen in at least over a year! Eventually I’m hoping to be able to move around the house even more, and while I know may not get any better I’m remaining positive and still clinging to hope. That’s the one thing that has really kept me going these last months, and something that, thankfully, God seems to have given me a bunch of lately, hope. God has really allowed me to push forward with a positive outlook.

I just want to say a quick thank you to a few people, and apologize up front to the people I am forgetting at this time, because we had a handful of people that have really blessed our lives in the past few months. First I’d like to thank the Hills, it’s been so neat getting to know you guys, and you have blessed our family so much. I look around the house and see your fingerprints everywhere. I’d also like to thank Stacey and Sean, while I don’t know you guys I know you have done so much with your visions and coordination of everything. You were the ones to get the project going and get people involved, and I’ve been so amazed with the response and grateful that you guys got the word out. Stacey and his son also did a lot of the work- floor, cabinets, etc. Thanks also to the McInturffs, we go back so far and it’s so neat to see that our families are still growing together even after all these years. And a big thank you to Brian, Quinn and everyone who helped us move. It was such a big job and there’s no way we could’ve done it without you. Quinn, you’re heart is so soft and it’s been sweet for me to have been there at the beginning and see your growth and how God has molded your heart. Brian, there’s no doubt about it, you have such a servant’s heart and God is going to use that in big ways, and I think He’ll use that cookie making talent of your too. :-) To my dear friend Jaclyn, you know how much I love you and I can’t thank you enough for unpacking my boxes, for spending time with me and supporting me, and for being my sister. A big thanks to the college ministry at East Valley Bible Church for donating towards my wheelchair, which I am now able to use some, and hopefully I’ll be able to use it more and more in the future. And lastly, to our family at East Valley Bible Church, I love you all so much, more than you probably realize, and I thank those of you so much for praying for me and my family, and for supporting us.

I also have to thank my grandparents so much. Grammy and Buppa did so much work, more than most in their 70’s are capable of, and both of them continue to amaze me with their stamina and strength (they also happen to be the healthiest in our family, despite being the oldest:-). Unfortunately they left to go back to Maine on Easter, after spending all winter with us. I was really sad to see them leave, I probably talked with them the most and spent more time with them than anyone else while they were here, but I know they needed to get back. I am really fortunate to know them and be as close to them as I am, not many grandkids have that. They support us so much, and now that they’re gone I’m back to having “Bonnie-sitters” while my parents are at work. “Bonnie-sitters” are sometimes people I know, and sometimes they’re people my mom knows, but it’s kind of cool because I don’t really get to meet a lot of people since I’m not able to leave the house. “Bonnie-sitters” are there just in case the house catches fire, or in case I need something I can’t reach, stuff like that.

Physically I’m still about the same. I left Boston at the end of October hoping that I’d improve at home, and while it’s nice to be home and not in some hospital or nursing home, I have not gotten any better. Right now I’m still having significant problems with my port; there is another rather large clot around both the reservoir and catheter (this is like my third clot in the last two months) and it is really painful. Anytime I move my arm it hurts in my shoulder region, and is starting to invade down into my chest tissue. So my dad is going to ask the PICC nurse if there is some way to image it. Last time he spoke with her when I had my first clot she said that the port would need to be removed and placed elsewhere, but I don’t think that is an option right now unless it’s life threatening, because I’m almost out of access points and can’t physically tolerate surgery. My concern though is if an infection is brewing, and then that would need to be taken care of immediately. Anything we can do to prolong my life I’m up for, but if a procedure/surgery isn’t then I don’t see the point in doing it.

I also switched to IV Coumidin, as my INR kept fluctuating because my absorption of pills is so bad, but even with the IV stuff my INR is still very low, putting me at even more risk for clots. So we’ll see, but if any of you out there could be praying for both those things, and just my situation in general, I would, as always, so appreciate it. We need all the wisdom from above that we can get, especially in dealing with the precarious nature of my current status.

A few weeks ago I lost my dear friend Allison Clark, she got the spend Palm Sunday and Easter with the Lord (I wonder what that was like!). She and I were the oldest living severe cases of mito that we knew of, and she was definitely a kindred spirit. She loved her Savior with everything in her, and fought a great fight. I had the privilege of meeting her when she was in Boston for appointments with our docs while I was admitted at MGH, but we had known each other from emailing and sending stuff to each other. We both encouraged each other and spurred each other on to love and good deeds; she was such a special person. If you get a chance I’m sure her family would appreciate your prayers; her older sister was getting married this weekend. I miss her so much, there were so many times where it was nice just to know that there was someone else out there going through the same things that you were, not that I wanted her to have to go through them, but it was comforting knowing you weren’t alone. I’m sad of course, but God has really been putting into my heart the very real notion that I am going to live forever, only a very small percentage will be here. I’m not going to die, I won’t ever be no more, my life will continue on in heaven, and the same is true for Allison, so I feel like she hasn’t really died, but just that she’s somewhere else for now, and I’ll meet her there someday. If you’d like to leave her family a note in her guestbook her website address is www.caringbridge.org/ky/allison.

Poor Sammy is adjusting to his new surroundings well so far, but we found out he has a pretty bad skin condition and colitis; poor thing has inherited some of my problems! Mummy is in the process of unpacking, but it will probably take a while, as there is a lot to go through. She spent 18 months of the last two years with me while I was admitted in hospitals, and it’s amazing how much you accumulate when you aren’t even at home. It’s nice to be here though, and I definitely feel less isolated with everyone all on one floor.

I have so much more to write, and no strength to continue. I’ve literally been writing this update all day- write some, rest some, write some, sleep some, etc., and now you’re going to spend all day reading it, ‘cause it’s so long! Just kidding! I’m going to try and update more frequently, but it always completely depends on my strength, and I feel like every time I promise that I go even longer without updating. I apologize; I do really want to keep everyone in the loop. I really do appreciate you all keeping up with what’s going on, it means so much that you guys care. I hope you all are having a wonderful spring! May you feel God’s presence today, and know that I love you and am praying for you.

All my love,
Bonnie

My new address is:
2311 West Impala Avenue
Mesa, Arizona 85202

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Friday, March 9, 2007 3:06 AM CST

Hello All,

This is going to be really quick but it's been awhile and I didn't want people to feel out of the loop. Bottom line, the last few months have been really, really hard for me. All I can do all day long, every single day is lay in bed, unable to do anything, while feeling horrible. The only thing that changes is whether I'm feeling just horrible, really horrible, or unbearably horrible. Today is another round of IVIG, so I could really use all the prayers out there. We're trying a new method of really upping my fluids to see if that helps lower the side effects, so hopefully that will help, we'll see. I'm also still on IV antibiotics, and the last two days have been tough. I'm not sure why yet but I've been in a lot more pain, especially in my kidneys and belly, and so we are all praying that the IVIG won't make things worse.

I really want to share my heart with everyone when I am able to write more. As I said it has been so tough; physically I feel inhuman sometimes just because of how badly my body is feeling and the support required to keep it going is just so much, and emotionally/mentally/spiritually I've been going through a really challenging time as well, just coming to grips with certain things and having a lot going through my head. I really want to share all this with you when I am up to writing more, because as tough as it has been with all these things God has remained faithful in ways I only hope to be able to express to you. And while physically I have been fighting a very hard fight I also want to share some neat things that have been emotionally uplifting, such as our house that is being worked on, which hopefully we'll be able to move into in about a month!

So, sorry for the tease, but I really covet your prayers at this challanging time, as always.

All my love, to each and everyone of you,
Bonnie

"...but he who endures to the end will be saved."
Matthew 10:22b

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Thursday, February 22, 2007 1:00 AM CST

Bonnie is getting a blood transfusion, and she is quite weak. Please pray that she regains some strength......she will spend the day at Good Samaritan Hospital. We will update more later...

Thursday, February 15, 2007 11:00 PM CST

Another update....Bonnie is currently getting her IVIG and is still getting her IV antibiotics/antifungals. We are praying that she does well with this IVIG, and that she won't get the headaches/fevers/bodyaches that accompanies these infusions. Her blood counts have also dropped and she will most likely need a couple of units of blood soon.


More later.....
Lyn


Tuesday, February 06, 2007 11:06 PM CST

Hi folks,
Bonnie's PCP prescribed some more IV antibiotics, and she gets them 5 times a day. We are praying that she starts feeling better soon. Thank you for your prayers and words of encouragement! She loves getting messages on the guestbook, email, and cards. They are all so appreciated!


Lyn


Monday, February 05, 2007 11:55 AM CST

*******UPDATE***********
The speciation showed the bacteria to be pseudomonas oryzihabitans......which is a new pathogen to Bonnie. Still don't know what her PCP will do. All of her cultures came back positive, including the peripherals.

More later,
Lyn



Sunday, February 04, 2007 11:05 PM CST
Hi......Bonnie is having troubles with the fevers, and the joint pains and headaches that go along with them. Her port formed a rather large blood clot yesterday, and today it started leaking so we changed the needle. She feels like something is wrong, and it seems like the IV antimocrobials aren't helping yet. Hopefully we will find out whether or not she is getting the right medicine if the lab has finished identifying what the bacteria is that is in her blood. She is feeling particularly bad and would like folks to pray that she will not get septic from this. Thank you....

- Lyn (AKA Mummy)



Friday, February 02, 2007 11:05 PM CST

Another update, Bonnie's blood cultures are growing out gram negative bacilli and we are waiting on the speciation. Her PCP started her on Primaxin (IV antibiotic) in addition to the Caspo (IV antifungal). In addition to feeling lousy with the bacteremia (blood infection), she is also feeling nauseated with headaches when getting the new meds.

Thank you for your continued prayers and guestbook entries.

-Lyn (AKA Mummy)




Thursday, February 01, 2007 4:05 PM CST

Just a quick note to let folks know that Bonnie woke up with a fever of 101.8, and we have done the blood and other cultures. She is getting IV Caspo (antifungal), and is feeling extremely weak and is in a lot of pain. Please pray that she will kick this infection quickly.

Thanks,
Lyn (Bonnie's Mummy)



Friday, January 26, 2007 4:05 AM CST

I would really covet your thoughts and prayers at this time as I am really having a tough time right now and feel as if my body is breaking down. My blood counts dropped really fast without any warning and so I had to go into the hospital for transfusions Tuesday. I'm hoping the germy exposure at the hospital won't cause an infection, but another big issue is that I have my IVIG infusion all day tomorrow, and since I already get really bad side effects I'm concerned that the stress from getting the transfusion will only increase the horribly painful side effects from the IVIG, but I have to get the infusion as my immune system is shot. It's been almost a year since I last underwent testing to see if they could find where I was bleeding in my GI tract, and while they couldn't see an exact spot when doing upper and lower endoscopies the bleeding has increased quite a bit and that is reflected in my need for transfusions and blood counts, and also the fact that we can just see more of it. I'm not in any physical condition that would permit my body to under go those tests again right now, but at some point a decision will need to be made regarding what to do about that situation. Also, because I have still been so sick, too sick to even go see my doctors, I have not been able to investigate the problems with my adrenal and pituitary glands, which makes already stressful days like Tuesday even worse since I have no stress response (usually when people's bodies are stressed they have a release of adrenaline to assist their body in getting through the stressor, I don't have that response and so when my body is stressed in any way not only do I not get the normal assistance to get through it but it also makes it harder to go through and causes a much longer recovery time). Please be praying for this IVIG infusion, it takes usually 12 or so hours and the last few times the side effects have been so severe that I've ended up in excruciating pain for at least a week.

My dad had a minor hand surgery today. While he was working on our new house a rather large piece of wood went into his finger and while at first he thought it was just a splinter it ended up being pretty big. Thankfully even though it was in there for about two weeks there was no major infection and no tendon/ligament involvement or damage.

On a fun note, it snowed here last week! Hard to believe but it has been very cold lately (I’ve been inside, but that’s what I’ve been told:-) and we actually had snow here in the metro Phoenix area. It was funny seeing photos of golf courses covered in a white blanket and cacti with clumps of snow on them, very pretty though. Also, I should let you know that the wrong address for our house was listed toward the bottom of the page with my contact info. We are currently at 2524 South El Paradiso Drive, Unit 123 Mesa Arizona 85202 and within the next few months we will be at 2311 (not 1123 as it was listed) West Impala Avenue, Mesa Arizona 85202; phone number is the same.

As always I cannot thank you enough for your continued prayers and support. A week does not go by without someone stepping up and filling in the gap for us, and I am deeply touched by everyone's involvement. It's such tangible evidence of God's care for us, and it's so neat to see God's resources shared amongst His children. Please accept my apologies for delayed thank you notes if you are due one, there is so much I need and want to do and I have so little strength to do any of it. The latter is such a source of frustration for me, and yet I have to trust that God has me doing what He wants me to when He wants me to.

My sincere love for my family (that’s you guys:-),
Bonnie

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Friday, January 19, 2007 2:04 AM CST

~new photos in the album~

I wanted to share the article below with all of you. It was done by the Arizona Christian News for their January issue to raise support (prayer and anything else anyone has to offer) for me, our family, and all of my medical expenses and issues related to all of that. I was especially surprised to see the quotes from my doctor because I’ve spent many years talking with him and have tried to live every day by faith. While we’ve had wonderful times and are very close, there have also been tremendous struggles as well. I was honored and touched that he sees me in that light and that he can clearly see my faith.

I’m still “hanging in there”. Nothing has changed physically, and rather than go on and on I’ll just leave it at that - you can read my last several journal entries to see the challenges I continue to go through. I am getting more excited to move to a one story home though, just the ability to move around the house a bit (although I’ll still be spending most of my time either on the couch or in bed) and possibly go in the backyard is exciting me more as I’ve been noticing that being so isolated in one room and only interacting with my parents and grandparents for the most part is affecting me more than I had thought it would. God is faithful though, and He’s the one doing it all. There are points where I kind of just throw up my hands and say “okay God, You’re going to have to do this because I just can’t right now”. And He does do it, and He’s always with me, so that means that no matter how hard life is, or how frustrated and low I am, that He is there, and He is doing it all.

I love you all so, so much. I don’t know what I’d do without all of the support and prayers you give to me and my family. The guestbook entries are especially encouraging to me. I do know though, that God takes all you prayers up in His arms and then pours them out on to us. I am grateful and humbled that so many of you are willing to go before the throne of God on behalf of me. The phrase “not worthy” does not even begin to sum up my feelings on that. My love and prayers to all of you, and hopes that your new year is turning out excellent.

All my love,
Bonnie

The title that appeared in the paper was “New Year Offers Hope for Codier” and located in the middle of the article was the quote from Dr. Jasser regarding my resiliency in a large bolded font. And yes, he does practice Islam. (just fyi, it has my age wrong, I turned 23 a few months ago).

P.S. If anyone would like a scanned copy of how it appeared in the paper I can email it to you, or if you would like a printed hard copy then contact me and we can figure out how to get it to you.




A NEW YEAR AND NEW HOPE

By Floyd Allen

Bonnie Codier, 22, has the kind of faith that may put the rest of us to shame. It didn’t come easy, however.

“For the past ten years we have constantly been in the ‘crisis’ mode,” Bonnie shared. “As a result, my relationship with God and with my family has become even stronger.”

Bonnie has a rare disease - so rare that it took ten years for it to be diagnosed.

“One of the things that amazes and frustrates me,” Dr. M. Zuhdi Jasser, Bonnie’s primary care physician said, “is that a condition that is as all consuming as what Bonnie is faced with has no specialist to deal with it.”

The ailment that plagues Bonnie is Mitochondrial Cytopathy, a disease that attacks every organ in her body. It is a progressive disease and, to date, it has no cure.

“Bonnie is remarkably resilient,” Dr. Jasser continued, “and it is plain to see that her resiliency is the result of her faith in God.”

“I fully concur with that,” Colleen Clark, a friend from Bonnie’s church, agreed. “Bonnie is truly a woman of faith, a real role model to the rest of us. During the course of our relationship I was in dire need of support due to my situation, and Bonnie constantly encouraged me, even though her condition was by far much worse than mine.”

Her condition is not without its challenges, and not just physically.

“Like everyone else, there are times that I wonder ‘why me?’ But, as I tell others, it is then that we must be sure not to give into those feelings – to know that God will give us the Grace to get though everything, and that He will never abandon us. It’s still difficult to proceed, we still suffer, but He is always in control and always gets us through it.”

Bonnie’s condition is one that not only affects her, but her entire family as well.

“We have been blessed,” David Codier, Bonnie’s dad, said, “because the relationship that my wife and I share has been strengthened by facing this ordeal with Bonnie. Because of the unpredictability of the disease, we don’t have the opportunity to get out and participate a great deal in many normal church activities, but our church family has still supported us during the past decade or so.”

And, support is something the Codier’s can use. Bonnie has recently lost her ability to maneuver, so the family’s next goal is to purchase an electric wheelchair and an accessible van to transport it.

“Getting out is such a joy for her,” David explained.

Bonnie’s lack of mobility has also necessitated that the Codier’s move to a new, one story home. As you can imagine, all of this presents more than a little bit of a financial challenge as well

“We sure covet everyone’s prayers,” David said when asked how we could help.

We don’t have to stop there, however. An account has been opened for Bonnie at Bank of America (Acct. #004379147441). As you pray for Bonnie, you may also want to help with these additional expenses by making a donation to that account.

“It’s encouraging to know,” Bonnie said with a smile in her voice, “that no matter what befalls us, we are still part of God’s perfect plan.”

With an attitude like that, there is always hope!

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Wednesday, January 3, 2007 3:01 AM CST

I don’t really know where to begin, there is so much bouncing around in my head the last several weeks. I’ll start with the not so good news and get that out of the way first. Physically I’ve just been having a really horrible time, I never ever thought I would be able to continue on day after day in this kind of condition. There is not one system or organ in my body that is not giving me some sort of grief. A few weeks ago I became very anemic, as no one at my dr.’s office was really checking my labs thoroughly, and required transfusions. I had to go to the hospital to get them (we’ve somehow made a way for me to get pretty much everything else at home that I’d usually go in for) and my dad had two guys from his work to carry me down the stairs, both to get me down and then after the entire day at the hospital they stayed late to carry me back up (thank you so much Willie and Veldon!). My energy goes very quickly these days, and once it’s used up it’s gone and I can’t support myself at all. I have the external manifestations muscle-wise, but also there are internal ramifications as well and my gut shuts down and everything in my body has a harder time functioning or it just stops working completely until I rest enough for some reserve to build back up. My days consist literally of me lying down in bed, or being propped up against pillows, and then to the commode a few times a day, and that’s it! So anything more than that, whether it’s bathing (even if it is only a bed bath) or trips that I have to take to the hospital or whatever wears me out so much that once my energy is gone I go totally limp (I call this point “hitting the wall”). Then whoever carries me up the stairs needs another person to hold my head and neck so it’s not flopping around. I came back from Boston with a humungous list of tests, procedures, and dr.’s that I needed to see per the dr.’s in Boston requests, and so far I’ve completed nothing just because I can’t physically do it. So, it has been very frustrating.

I also had my regular IVIG infusion, which normally gives me quite a few painful side effects but especially if I have something done close to the same time it makes it worse. So the IVIG infusion took place two days after my transfusions, and this was the week before Christmas. Thankfully I had been thinking ahead as far as gifts go because I was completely out of it the entire week beforehand. I was praying so hard that God would make me feel even just “ok” for Christmas day. I didn’t care if I felt bad all the days before (which I did) or all the days after (which I did) but Christmas day I didn’t feel quite as bad. We had such a wonderful day; it was so laid back and just really relaxing. Everyone had the big meal that we usually have Christmas day on Christmas Eve, which was great and people took turns watching me (I really wasn’t doing well and was in bed with my eyes closed practically the entire day) and then Christmas day we just had fun finger food like brie and crackers, hummus and pita chips, etc. We opened stockings first, and then Sean always makes cinnamon rolls so we had those next. I can only eat very small amounts these days so after a couple of bites I read the Christmas story out of Luke while everyone else finished eating. Then we did presents. Now, Sean and I have a tradition of sitting next to each other opening gifts. It started just coincidently, but then we started doing it on purpose since we would always have such a good time with our own inside jokes or commentary about things, it’s so much fun. After all that I was totally pooped. But after a nap I got a call from one of my dear friends whom I haven’t seen in three years. My friend Catherine lives in France and I’ve known her since I was like 8 or 9, so it was good to see her for a little while and catch up.

In the last week I’ve had a lot of issues come up; I had an ovarian cyst rupture, which hurts something awful, and if that wasn’t enough something happened with my gut that shut it down. I don’t know if it’s an ileus or full on obstruction, but I stopped eating solids to let the gut rest and am hoping that it will resolve without intervention. And, in addition to everything else that has been chronically going on (infection, pituitary and adrenal problems, renal and heart issues, major gut problems, blood issues, and on and on, it would take ten pages to list everything I’m currently dealing with) I’ve been having coagulation problems that are bizarre (a chronic nosebleed that just keeps going, bleeding in my gut, and an INR that jumps from 4.7 to 1.6 in about two days). I have these weird blistery bumps on my fingers that have appeared with almost every infection I’ve had, but no one can tell me what they mean. Some have said that it is a sign of infection, but maybe these ones are from the caspo that I’ve been on for so long? If any one has had this type of symptom every please let me know if you’ve had any success diagnosing them.

So that’s some of the physical issues I’m currently facing. I know I probably rambled with some of it, but truthfully there is so much more that I didn’t even mention. But mentally and emotionally it’s been pretty hard lately as well. One of my closer mito friends recently went into renal failure and can’t do anything about it. She is pretty much the closest to my age and severity of disease, and I got to meet her this fall while I was admitted at MGH. I’m heartbroken knowing that she may not survive much longer. I have been praying so hard for her, and I know God can do huge things. Her name is Allison if you could be praying for her and her family. Another really dear friend of mine has a recurrence of cancer, so she has another tough treatment course of chemo, but no for sure cure. Another really close friend that I consider a sister is facing the three year mark of losing her mom, and a bunch of the young adult mito patients I know are struggling in one way or another. And, two young boys with mito that I’ve known of died last week. So, you can imagine that with all of that, and my physical condition that I am in right now has sent my mind in a million different directions. So much of it is so intensely personal, that I don’t know how much I’ll be sharing here, but just know it’s been hard. I know it’s hard for some people who die suddenly in car crashes or other ways that they don’t know are coming, but in some ways I think that ignorance must be bliss, they don’t have a chance to contemplate certain things that other people who die slowly either with terminal disease or whatever contemplate. There is a lot in my mind that I won’t share here, and there’s not much I won’t :), but there are certain things I wonder, certain things that make me sad (such as watching my friends go through these things), and certain feelings I can’t even classify. But, I do know that God understands my feelings and why I feel a certain way, and He’s ok with that. If I have learned anything in my life it’s that I know I can trust God to know what He is doing, and so whatever I feel I know that God’s got it right. I’m at a point where I could have had my last Christmas or last New Year, it may not have been, but I don’t know what this year will bring. The thing that most people don’t get though, is that the same could be said for any of them. There have been times where I should’ve died and have almost died, but I wasn’t finished with God’s work for me yet. And no matter what is wrong with me (which is a lot) or how I feel (which is in a lot of pain and always tired) God will sustain me as long as He is using me. He has the will to do so and the power to bring it about. And the second I have finished everything He has allotted for me to do - not one bit of intervention by others will be able to stop Him from bringing me home. I KNOW that is true. I don’t know if I have ever been at a more bleak baseline, there have been times when I’ve been worse sure, but as far as day to day living I don’t know that I’ve ever been this low. And yet I don’t think I’ve ever had a stronger will to keep going. I really don’t think I’m done, I just feel like God has a lot more for me to do. I could be wrong, but that’s just what I feel inside. I feel like God is pushing me to keep fighting (which is really hard to do with this disease), to keep running the race He has set before me. And I’m dreaming big. The Bible says that God is able to do exceedingly and abundantly above anything that we could ever ask or imagine (Ephesians 3:20) so I’m dreaming big. I keep thinking of my mom, who was told at age 19 that she had 3-5 years to live because of a terminal liver disease. Now, granted I probably have a lot more wrong, but that doesn’t matter, because God is not limited by how sick or not sick we are. I may not see the end of this new year, but I am really looking forward to this new year and we are praying that it will be better than last.

Part of our hopes that this year will be better is that we are doing more to help conserve my energy. My parents just got a used van that has a ramp so the previously very difficult transfers to the car will hopefully be easier now. I’m still waiting for my new wheelchair. So many crazy things have happened to delay my getting it, but hopefully things will be ironed out and it will come quickly. Also, the new one story house should help aid in energy conservation. After getting possession of the house many major problems were found. My father and grandfather started work on the house, and God gave us a huge blessing - some people from our church are helping to fix things and make our house wheelchair accessible! I don’t know what all is being done but I do know I see my parents a bit less stressed and we are excited to see what actually transpires. I’ll probably update on that stuff as I know more and when I have more time, but for now we are still in our three story townhome. To all who are contributing supplies and labor to our house, thank you! Everything is so much appreciated – as it allows our resources to be used towards medical expenses :). We are amazed and humbled by what God is doing, and how He is doing it.

One huge really exciting thing that happened recently is that I became an Aunt!!!!! :) My dearest friends, whom I consider my brother and sister quite literally, and who are also my favoritest people, had the most beautiful baby girl. So I am now an Aunt to my niece Gracie. I’m hoping to add a picture soon when I get one. I could not be happier for this new family and am so honored and excited to be a part of it. These people lift me up in so many ways and every time I see them it just brightens my whole life.

Well, I am quite exhausted, and I’m sorry if I’ve gone on too long or shared too much, but you all pray for me so much and I really want to keep everyone in the loop and up to date with everything. I hope you all had a wonderful holiday season and I hope the new year has started well. The holidays aren’t quite over yet, there is still Petite Noël, (or Three King’s Day) on the 6th (Epiphany). It’s a wonderful excuse to extend the holidays and keep up the decorations a little longer. :)

I think of you and pray for you all so often, and am humbled that you do the same for me. Thank you so much for all your support and love.

Bonnie

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Saturday, December 23, 2006 11:09 PM CST

Hi all - on this Christmas Eve Eve..... Bonnie is struggling to recover from the IVIG, and wanted me (Mummy) to post a small update. She had 2 units of blood last week (yay!) at the hospital, and Thursday she got her IVIG. She is having the painful side effects, and hopes to be feeling well enough tomorrow to post a more thorough update. She is still on the IV Caspofungen for her infection.

The boyscouts at our church came by with a festive mini-tree with very useful cards on it ;) - Thanks guys!

Sean is home for the holidays, and Grammy and Buppa are here - so we are looking forward to spending a quiet Christmas together.

Please be praying for all the mito folks, especially our friends Allison, Heather, and Malisa......

More tomorrow......





Wednesday, December 6, 2006 2:09 AM CST

Just a quick update...

I've been sick with a bad infection, again. Feeling horribly and had thrush all throughout my mouth, throat, and down my esophagus in addition to awful pain all over my body and red/inflammed ears. The culture speciation finally came back and it's the same bug I had while at MGH this fall. I was worried then that the ID was not treating me with a long enough course of antifungals, and it's looks like I was right because it came back really fast, or possibly was never erradicated to begin with. My internist here put me on Caspo pretty much right away, good thing otherwise I'd definitely be admitted right now. I'm still having a really hard time though. The Caspo is really toxic to my system, it's one of the big gun IV meds, and every infusion makes me really sick. I'll be on it until I can get consecutively clean cultures.

So bottom line is I'm still having an incredibly tough time. In addition to the current infection isues I'm still having problems with my gut that no one can figure out. I have positive guaic all to most of the time and my weakness/muscles are actually giving me even more grief. Last night while I was trying to fall asleep all my muscles started writhing uncontrollably and were very painful. I can't really explain what I experienced but it was scary and painful. There's just so much pain these days.

I'm frustrated and having a hard time lately. I just don't understand why I can't have any sort of break and keep having major problems. If it weren't for your prayers and support, and for God's unwavering hand holding me up, I would crumble. This cookie is staying together though, :-) at least for today. I continue to covet your prayers, and if you could please add some of my mito sisters I would be grateful. For some reason we are all having issues in one form or another and though we are all trying to stick together and hang in, it's getting really hard. There's a bunch of us, and I'm probably going to forget someone because I'm falling asleep as I write, but especially Malisa, Allison, Heather, and Alyson are having some big issues like me.

I hope you all are doing great, and hopefully I'll be doing better the next time I write.

Much love and hugs,
Bonnie

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Friday, November 24, 2006 1:05 PM CST

Hi all.....A quick update to say that after coming down with a horrendous headache and stomach ache, Bonnie woke up with a fever of 101.6, and we are waiting on the on-call doc to see if we need to be doing anything more than usual (already drew cultures, labs, etc.). Hopefully, this is a small "blip" and she will start feeling better soon. She wanted me to post the link to a video on mito that explains the disease and shows two of her docs in Boston (over 11 minutes long).

http://www.boston.com/partners/worldnow/necn.html?catID=85603&clipid=1022185&autoStart=true&mute=false&continuous=true

I will update later....

-Mummy


Thursday, November 23, 2006 9:23 PM CST

Not too much to report. I had my IVIG infusion yesterday through last night, and it went okay, although now I am feeling really bad with lots of pain, which is unfortunately my typical reaction. I’m hoping that it will help keep me from getting the flu, as I invariably get sick this time of year. My immunologist doesn’t want me to get a flu shot since I’m so vulnerable and wouldn’t be able to fight off the small amount that is in the shot, so he has me taking something else through the whole course of the season in small enough doses that it hopefully won’t make me sick. My motility has gotten quite a bit worse over the last couple of weeks, and I am having lots of pain and difficulty with my belly. Still need to talk with the Boston docs about that, but sort of procrastinating since I don’t really want to go through the pain and energy expense of a bunch of tests and procedures right now to try and figure it out. I also still can’t walk or stand, and the weakness is just not getting better. Most days I can barely do anything; I should’ve been able to pick out paint colors for my room in one sitting, and yet it has taken me weeks to sort through just because of how badly I feel.

Speaking of the new/old house, my parents took possession last night, and unfortunately found out it was in worse shape than initially thought. We have a lot of work to do, but there just aren’t that many one level houses available right now. I have not yet received my electric wheelchair. As I wrote the guy initially told us that it would only be 2-3 weeks. Well, we have now found out that it was not at all approved by the insurance and something changed about the coverage or something got messed up, typical. This chair is more expensive than any car that my parents have ever bought, but hopefully it will help conserve my energy and open my world up a bit.

Sean has been home for a couple of weeks on break. He finally packed up his room and has been sleeping in and relaxing while still getting his errands and misc. stuff done. It has been really nice to visit with him, because of my admissions we really haven’t spent that much time together this year. Buppa and Grammy should be here in about a week, and I’m really looking forward to seeing them. They’ll be with us all winter and into the spring. I have a friend who lives in Chicago visiting this weekend; she is a really close friend so hopefully we’ll be able to spend some good time together.

I am so thankful for all of you who check in on me and support me with your prayers and encouragement. I could not have gotten through this year without all of you and I am privileged to be counted as your friend. A big thank you to my friends who made us Thanksgiving dinner today. We so appreciated it and it tasted delicious!! Very yummy, you guys can make dinner again some other time (wink, wink). Also, if you could pray for my friend Danielle, she was in a car accident last night and is totally fine but has a concussion and is a bit shaken up.

Psalm 75:1
We give thanks to You, O God, we give thanks! For Your wondrous works declare that Your name is near.

Love,
Bonnie

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Tuesday, November 7, 2006 2:05 AM CST

Surprise, surprise. It didn’t take me forever to post in this journal again! I’m trying to keep up more regularly, but as you know it all depends on how I feel. So hopefully instead of writing book lengths every time I update the posts will be shorter and more frequent. That’s the plan anyway, and again, it totally depends on how I feel. This journal entry (I don’t like to think of this as a blog, but rather a journal that other people can read) comes so quickly after the previous one because of my anxiousness to see if this new trick I learned to add photos really works. So, if in between the writing you don’t see pictures it means that I have failed and that I’ll just have to post them at different times in the album. Those pictures are updated now as well. So, hope you enjoy.

This first picture is a beautiful one of my Mummy from last weekend. She and my dad went to a fundraiser dinner at the Gainey Ranch resort in Scottsdale (which I’ve heard is gorgeous) and they also got to spend the night there (one of the sponsers of the benefit gave it to them). I was so glad that they got to go and have some fun after not having any break for a really long time. My older brother Sean came and spent the night with me and did a super job taking care of me. Mummy had this beautiful dress that is made of white silk with all this pretty beading. She was radiant and I helped her pick out her jewelry (I have a minor obsession with jewelry, really anything that is sparkly) and even let her use some of mine, we like to share. J (if you want to see a full length picture there is one in the album)

This next picture is of my primary nurse and I during this last admission at MGH. Betty Ann was so great, I mean she was one of the best nurses I’ve ever had and I just felt so comfortable with her and she was spot on with everything and just did the best job taking care of me and advocating for me.






This is Lindsay, who was like my second primary nurse, although not officially so. I did have her a lot though which I was really grateful for because she too was really terrific. I really connected with her just because we are fairly close in age and our personalities meshed really well. She too. was really great just in her technique and also just supporting me throughout the whole thing. Not surprising - she was trained by Betty Ann (I think everyone who trains with Betty Ann turns out well;-).






This is one of the aides on the floor and her name is Thi (pronounced “Tea”). She was of great comfort to me while I was there. Whenever she would come into my room and see me crying (and there were quite a few of those times) she would come and just wrap me up in a hug and just let me cry as long as I needed to. She would always tell me to keep fighting (as the above two would as well) and find ways to make me laugh. She had the best laugh too; every time she laughed it was so genuine and so real that you could really tell when something was funny to her.






All these women I really respect and appreciate; they have helped me through tough times, made me laugh, and supported me. Most all of the nurses on the floor were good, and it really helps when you’re sick to have people you can trust.

In other news, I was fitted for my electric wheelchair last week and if everything goes smoothly (which rarely happens, but hopefully will this time) I may have it in as soon as three weeks. I’m still having a really hard time just in how I am feeling. Not sleeping well because of pain, having trouble eating, getting nauseous, and just in general that awful sick feeling. Other bad mito cases probably know what I’m talking about. Still having really bad weakness as well, sometimes even my eyes get so tired that the muscles can’t keep them focused anymore so I end up having to tape one eyelid down so that I can still see.

Sean is doing really well in med school, and even though most of the time he is on the opposite side of the city in his own apartment it is nice that he can come home a few times a month. Both of my parents are back at work and doing well, and plans for the move are starting to come together. Looks like we’ll be moving around the end of November but I’m not sure when I’ll get in the house, because a bunch of stuff has to be done before I can move in. My grandparents are slowly making their way across the country, visiting friends and family. They should get here around the beginning of December, which will be a big help. Right now my Mummy has to get people to stay with me while she and my dad are at work (fortunately she only works three days a week for a few hours in the morning and then another few in the afternoon) so when they get here my grandparents will be able to stay with me and they just do a lot to help out in general. Plus, I totally enjoy hanging out with them. Not many people my age get to be so close to their grandparents, and being aware of that fact just makes me all the more grateful for our relationship/friendship.

A big thank you for the meals this last week. Laurel, I had a small amount of your lasagna and it was sooo good! And Mrs. Snyder, I had a small amount of brownie and that was yummy too! I say when you can only have a small amount of food every day you’d better make it good stuff!

Well, this was a bit longer than I had hoped. Words just seem to spill out of me, so I guess you’re just going to have to get used to longer posts. I guess that’s better than no news at all. And even though I am still doing poorly (there are only so many ways and times you can express just how crappy you feel) I thought you’d enjoy a more upbeat note with pictures so you can actually see the people I talk about. Plus, I think it’s important to share that while things are really tough, and I’m in no means a “good place”, that I am still fighting hard and trying to stay as positive as I can. There are definitely those times when I fall apart, I am human after all, but in general I try to distract myself from the pain and frustration. I’m not always successful even half the time, but I try. Godliness with contentment really is great gain (1 Timothy 6:6)

I really love you all and I hope you are having a wonderful Fall. Thank you so much for your prayers on my behalf; they mean more to me than you know.

All my love and appreciation,
Bonnie

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Wednesday, November 1, 2006 0:20 AM CST

Returning home has been wonderful, although not perfect. I can’t tell you how great it has been to not have interruptions every half hour by nurses or doctors (although I did really love and appreciate my nurses), and to finally have my constant companion Sammy always by my side is not only comforting but also an endless source of entertainment for my family and I. But returning home has also brought to the forefront things that were on the back burner while admitted and on the other side of the country. For a while after returning I actually worsened quite a bit; unbelievable pain and lots of vomiting were not the homecoming surprises I was hoping for. Since then there has been a mixture of feeling a little better and then worsening again, sometimes being able to eat and other times having my gut shut down. The pain has been pretty constant though. The weakness is still quite severe; I’ve lost my ability to walk and have to use a bedside commode because I was getting too worn out transferring from bed to wheelchair to bathroom to wheelchair and then back to bed. I also have a ton of things that need to be done that I just can’t do, everything from paperwork for applying for disability and social security (which I’ve been denied already, so I have to re-apply) to sorting through everything from the trip to things that I actually want to do like catching up on emails and writing thank you notes to people. I wish I could update more and check in and leave notes on my friends sites too, but I have zero energy these days and most of the time lately I go through the entire day doing literally nothing. I’ve been getting frustrated really easily because of it.

Plus, there are a lot of things coming up and a lot of changes that I’m still having a hard time digesting. First of all we’re moving. My parents just bought a house last week and I haven’t even seen it yet (I haven’t even left the room I currently am in since getting back, that’s how bad my mobility is right now). Where we live now is a town house that is tall and skinny (3 stories high) and after learning some things this summer and just kind of looking ahead a little my parents realized that this house won’t work for us anymore and that we need a one story home. I protested, as those things that I know deep down are a bit hard for me to accept just yet. Before I left the doctors in Boston, they let me know that while they are “hoping” that I may improve slightly, there is a great chance of me not. I went from not even having a solid diagnosis at the beginning of the year to finding out that I was the most complicated patient the Mito docs had ever seen. So the move makes sense, and my family is doing everything they can to make my life as good as it can be and once I get my electric wheelchair (the guy should be coming either this week or next to fit me) it would be insanity and impossible to get me and the wheelchair up and down the stairs. Plus, there is a safety issue, since in the case of fire or if something happened to me my mom wouldn’t be able to get me down the stairs herself. In fact we already encountered that situation this summer when I had to go to the ER in critical condition before leaving for Boston. My mom had to call her friend over to help me with all my equipment in getting down the stairs.

I am having a hard time getting adjusted to these changes ahead though. We only moved into this house two years ago, but of that two years I’ve only been home a few months, so I still feel rather unsettled. Plus, this house has been such a perfect fit for us. We all have plenty of space and it’s been the lowest mortgage my parents have ever had. I mean, that was the whole point of moving from our last house anyway was to move into something less expensive so they could better pay the medical bills. I feel bad that it’s because of me that we have to move, not just because moving is a hassle but it will also quadruple the mortgage. It’s also a smaller house so we’re going to have to add on to it a little, but we also have to make the whole thing wheelchair accessible. Speaking of the wheelchair, that will be another probably five thousand dollars, and we don’t know how much of that the insurance will pay for. I’m approaching my lifetime cap on our insurance, which is why we’ve been applying for disability and such, and I thought for sure they’d approve me right away, I mean, I know of people less disabled than I am who have been approved, so I’m not sure why they denied me. Good thing I can appeal. But another big expense coming up is we have to get a wheelchair accessible car. I don’t know if it will be a van or not, my mom has said there are some smaller cars that you can drive up into through the back with a hatchback and ramp. With gas prices so high we’re hoping for something that gets better gas mileage than those big vans that you normally see transporting wheelchairs. Like I said, lots of big changes. It does make me feel sad that I’m putting my family through this, not only the hassle (we haven’t even fully unpacked from the last move!) but also just the financial burdens. Especially with this last admission in Boston the medical bills are definitely quite a strain, but all this other stuff too. I didn’t want to even still be living with my parents at 23 let alone burden them these other ways.

I do know how good I have it, to have parents willing to do all of this to make the rest of my time here as good as it can be. I’m having a harder time about it than they are, to them it’s a privilege, and that just shows how much God has blessed me with an extraordinary family. I think one of the reasons it’s so hard is not the changes themselves, but more of what all these things indicate about my condition and life; I think before I was kind of just waiting and hoping that I would get better, or at least to where I was two years ago, if I just rested enough or if I could just get clear of infections then I could do things and be okay. But it’s slowly sinking in, especially after hearing from the docs over the summer, that I may improve slightly, but not likely, and since it’s a progressive disease I’m not going to get better from here on out, it’ll pretty much be downhill and I’ll probably always have some form of infection going on. And, since it’s a terminal disease, the docs really encouraged me to do the things I want to do now and not wait. To not wait until I feel optimal, because I probably never will, but to still get out and do stuff because we don’t know how long I have, could be six weeks, could be six months, six years, or God willing 60 more years! (that’s what I’m hoping for). That being said, just like I always say, if God wants to sustain me until I’m 80 He will, and nothing (including this awful disease) will be able to stop Him. And if my work is done and He wants to take me tomorrow, then no amount of intervention will be able to stop that either. God’s sovereignty and knowing His sustaining power really puts me at ease, knowing that His purposes for my life WILL be fulfilled, regardless of what is happening to my body.

Because of all the current expenses we already have, and the ones that are coming up with all these changes (as I wrote above) we have opened an account if anyone wants to donate to help us handle the expenses of getting an electric wheelchair, handicap accessible car or van, converting the house to be wheelchair accessible, the medical bills and all future expenses. The account is at Bank of America and the account number is: 004379147441. As with everything we know that God will provide, not just financially but for ALL our needs, just as He does with all of His precious children. Sometimes He uses other members of the body of Christ, which is why we put this information out there, and no matter what we trust Him and are content because we have Him.

There are a lot of things I am dealing with, that our whole family is dealing with. A lot of days I wake up and don’t know how I’ll be able to do anything, and usually I can’t, and it’s hard for me to imagine living my whole life like this. Our whole family has been in crisis mode non-stop for a long time now, and I keep having to remind myself that I haven’t had any chance to recover from anything without having something else major come up. I get really frustrated not just with the disease and constantly being in pain, but that God made my personality such that I get really flustered when I’m not organized-with my room clean and everything neat, tidy, put away and complete. I don’t understand why God made me like that and then took away my ability to stay that way, but in my brain I know everything I have, and to not know where that stuff is and see my room and desk in shambles is really frustrating to me. Things like that I struggle with; why did God make me ambitious and hard working if I can’t do anything with it? Why did God give me certain desires that will never be fulfilled? God did give my family each other, and Himself, and we just take one day at a time, just trying to get through it.

I am continuously grateful for all your prayers and notes and support and encouragement, they help me keep going, keep fighting. And it is a fight, and someday this fight will be won! Not by might nor by power, but by my Spirit, says the Lord! (Zechariah 4:6)

I know a bunch of the “mito maidens” are having a hard time, but I am so grateful for all of the support and encouragement you girls give me. Stay strong and we’ll all hang tough together!

All of my love and appreciation,
Bonnie

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Friday, October 20, 2006 11:42 PM CDT

Hi all,
Bonnie is home, and is recovering from the trip. She has had a lot of nausea, throwing up, and stomach pain, and all the symptoms she experiences when she has an ileus. She is only able to have liquids, but once her gut starts working she'll be able to eat small amounts. She will update when she is feeling a bit better. Thank you for your prayers....it would have been risky driving her - and we were grateful for the help before, during, and after the flight. The ambulance brought her home and got her up the stairs. She isn't able to walk yet, but we are hoping that she will regain some strength and be able to walk enough to get from one room to another.
More later......we wanted to let everyone know she is back home :).

-Mummy



Tuesday, October 17, 2006 11:23 PM CDT

A Huge praise!!!!The insurance is flying Bonnie home tomorrow! We are packing and sorting.....and getting records to bring home. Sammy gets to come too!! Bonnie is looking forward getting home (as are we all). Thank you for your prayers - there will be more updating once we are back :).

-Mummy

Monday, October 16, 2006 0:23 AM CDT

Operation "Homecoming" is underway ---- Please be praying that the insurance will fly Bonnie home. She has, unfortunately, come down with another infection and is currently on 2 IV antibiotics. She is also extremely weak.

More updating later.....

-Mummy



Thursday, October 12, 2006 0:23 AM CDT

Well some interesting decisions are going to be made within the next few days. Around 3pm Boston time tomorrow (Thursday) I should be getting my dual port-a-cath placed. Surgery said they couldn’t do it until next week, and because of the previous experience we weren’t sure we wanted them doing it anyway. So interventional radiology will be doing it, which has its own worries, but hopefully my primary nurse (or, if the floor is too busy, another nurse) can go down with me and be there during the procedure. We’ve already talked with both anesthesia and IR and it seems like things should go pretty smoothly, but that’s what we thought last time. At least the general anesthesia part should be okay, we discussed that at length.

The really tricky part comes after the port goes in and I’ve recovered enough to be discharged. The best option would be to fly home medically (obviously, and we’ve been fighting for that all along); the insurance company, as you know, has not been amenable to that. All of the doctors and even the physical therapists have said that I’m not strong enough to fly commercially, and my weakness has actually gotten much worse since this past weekend. At first I was thinking maybe I just overdid it with birthday stuff last week, but the exhaustion and severe weakness has continued despite rest. My neuro-geneticist was asked to come and check on me, but no one knows if she has time this week or what her schedule is. At this point I can only take two steps before collapsing, and even just sitting up to use the facilities wears me out so much that I can’t support myself in my trunk area. So considering the flight is 6-7 hours, and add 2-3 hours on top of that for getting through the airport and security and you can see how there is just no way I could handle that. It would wear me out so much that I’d just get bacteremic as soon as I got home, so that would not be a good option. My parents have been on the phone talking with tons of airlines because they read online that stretchers were allowed if you bought like six first class tickets (which would be really expensive for us) or something like that, then I could lie down at least during the flight. But when they investigated that it turns out it’s only for international flights (or Hawaii and Alaska). I’ve always wanted to go to Paris (I’m still going to come Catherine!) but now probably is not the best time. And when asked the airlines said they would not fly someone who couldn’t sit up, so flying commercially really isn’t an option.

Even though we’ve done everything they’ve asked of us, and the decisions they’ve made are totally irrational and illogical, and since they’ve refused it over and over already we don’t think the insurance company will approve a flight now, but we are giving it our best shot and asking again. They are meeting tomorrow to make a decision, so if you could please be praying for God’s will to be done here. The insurance wants to send me to rehab, which won’t help my weakness since it’s not a matter of my muscles just being weak, they don’t have the support they need to function, and rehab doesn’t help that. The insurance is willing to pay $500 a day for a rehab bed, and that’s before you add on physician’s fees, the cost of meds and equipment, and everything else that is added to just the room fee, but they won’t pay for a $15-20,000 flight. Physical therapy thinks I would need at least a month before I could fly, and that’s if nothing happens in the meantime and provided this increased weakness will go away and is not a permanent progression of the disease, which I hope it isn’t but could be. I don’t even meet the requirements for rehab, because you have to be in pretty good shape to handle all of the therapy (usually 2-4 sessions per day) and my PT said I wouldn’t even be able to tolerate it every day, it’d have to be every other day at most.

I wish I could just hang at my grandparent’s house in Maine, but they’re leaving in about a week to make their way back to Arizona (and their Maine house gets closed up for winter-electricity off, pipes drained, windows covered, etc.) AND we have no home health care out here. All this desperation has even lead us to consider driving back home by renting a van or something. We’d have to somehow get all the equipment and meds needed; can you imagine, a bed set up with me getting hospital level care in the back of a van with my parents driving and Sammy hanging out in the back with me, all the while traveling across country while recovering from surgery?!?!? Dr. R even suggested him driving me home in an RV himself J. If there wasn’t enough craziness, my dad’s leave of absence is over soon, so my dad has to be back 100

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Saturday, September 30, 2006 11:47 PM CDT

This admission is turning out to be one of the most difficult ones I have ever had. Especially this past week I’ve been under a lot of pressure and stress. Last Friday everything was scheduled so that I would get a femoral line placed on Monday. Things got very mixed up and the procedure was shuffled back and forth between different departments and in the end no one would even agree to putting a femoral line in. Even after talking with my doc back home several times the docs who could place a femoral refused After having dozens and dozens of central and pacemaker lines placed in my chest and neck the people back home realized how much damage those vessels were incurring and decided before losing access completely to save those vessels for permanent lines only and use my femorals for temporary lines (since I lost access in my arms so fast they didn’t want the same thing to happen with my chest and leave only the femoral veins available for permanent lines, which would severely limit my ability to get out or even move). The femoral that I had was infected and since I have to go off both the caspo and the vanco for two weeks to make sure the sepsis has cleared I did need a new line. After much frustration with not getting anyone to think about future access (the docs here only cared about what would be easiest and have less liability for them) the times for the procedure and which department would be doing it kept changing until finally surgery said they would do both this temporary line and the next port placement in two weeks so that the damage to my veins would be limited as much as possible and it was set for Thursday. Well I had already signed consent for anesthesia on Sunday for the original procedure time on Monday and Wednesday some surgery resident came and dropped off the consent for the next day and said she would be back later to pick it up. I had already gone through so much agonizing about the placement (since my doctors back home wanted it one way and here they refused, so I was stuck in the middle) but realizing I had no other choice I signed the consent even though I didn’t feel like the procedure was in my best interest. Well, later that evening, another surgery resident came up and started yelling at me and attacking me, and ultimately said that the surgery department would NOT be doing the procedure here and that interventional radiology should be doing it, even though that was one of the departments that had refused, which is why surgery was doing it anyway, nevermind that the IR people here are “not congenial” (I have had a history of procedures there that have not gone well) AND the fact that the OR was already booked and consents signed. Fortunately my nurse was in here with me to hear the whole thing; she was in shock and appalled that this resident treated me like that. She even went out and discussed with the rest of the nurses what to do and none of them had ever heard of a patient being treated that badly.

The next morning I spiked a high temp and had one of my really bad septic episodes. I had been given four units of plasma all through the night but I’ve never had a problem with that before. The rigors were so bad that even with people trying to hold me down my body wouldn’t stop shaking. After tons of meds to try and bring it down, finally by early afternoon my temp went down a little. I was assured this specific attending would be doing the surgery to place the line and that I would be under general anesthesia so I wouldn’t be aware of anything because I was so compromised from the fever. Once I got down to the OR’s I found out the that person doing the procedure was the horrible resident who attacked me the day before, and the OR staff that was friendly and nice before she showed up were nasty after I heard her through the curtain telling them how I was such a horrible and difficult patient, amongst other untruths. Even the anesthesiologist was really difficult and had no idea what she was supposed to be doing (she even asked me why she was there). Long story short everything was messed up, literally one of the worst procedures I’ve ever had. Anesthesia was bad (they didn’t even numb my neck to inset the line) and I had pretty much the whole OR team yelling at me before and after the procedure. I felt, and was, totally alone and totally taken advantage of. They saw that I was vulnerable and they more than took advantage of it. It was horrid. Even before going in things were not as I was told they were supposed to be, and when I raised some questions just to clarify, people got upset and brought in this guy to literally shut me up. After telling my parents and nurse what had happened my nurse had to actually leave the room because she was upset at what they did to me and wanted to punch the surgery resident. Please be praying for me and my parents as we deal with many difficult things like this. It would be hard enough just to only be sick, but to have these awful huge things to deal with on top of it all makes it so much worse. We also have to talk with patient advocacy about this on Monday. I was so shaken by all of this that I didn’t really want to talk with them, also being concerned about backlash especially with still another surgery to place the port coming up, but most of the staff up here really urged me to talk with them, and I really don’t want anyone else to have to go through something similar. So please be praying for that meeting.

As I write I’m getting another transfusion, my second unit today. My neck is still quite sore, I’m sure the care I was assured would be taken in placing the line was replaced with roughness as I have never had a line placement hurt this badly so long after the procedure took place. I also had yet another (my third at least) cort-stim test. The endocrinology team has been brought in and it looks like I have some sort of pituitary/adrenal/thyroid and other hormones deficiency and I have failed the cort stim test every time it has been given. So I start taking replacement steroids tomorrow, hopefully they will help. Basically when you are stressed your body responds with extra stuff to help you manage and get through it. It looks like my body doesn’t respond at all when it is stressed, so it takes an even bigger toll on me, and my life has been nothing but stress since getting here!

Also, my insurance company is being really crazy and them not understanding my disease process or how it’s supposed to be managed is not helping them make good decisions. So basically I’m stuck here for a while. I’ll be in the hospital for a few more weeks (about two until the port is placed and however long after that until I recover). After that I don’t know what will happen. Since this isn’t a mito problem right now, and especially since I’m not seeing my mito doctors here that much anyway it really does make more sense for me to be at a hospital back home with the doctors who know me better rather than the ever changing teams here (the doctors for each service changes literally every single week), but the medical director of the insurance doesn’t see that. So I will be stuck here for my birthday as well, which is Wednesday (October 4th). The one bright spot in all this horribleness is that I have gotten extremely close with the staff up here and they are wonderful! There are a few nurses in particular that I really enjoy, and they have decided to throw me some sort of party for my birthday! One of them is from SE Asia (Vietnam I think) and she is going to make her specialty for my big day, shrimp eggrolls! As always my parents and I are trying to make the best out of an awful situation, and I can’t even fathom the “whys” this time around, but I do know God does have His reasons. Even though that doesn’t make everything go away, and it doesn’t even make the situation easier, I do trust it.

God IS here, He isn’t leaving, and He is doing things-I just may not be able to see them. Knowing that doesn’t make any of this easier, it’s called suffering and trials for a reason. God has called me to walk a very narrow road and it has cost me everything. I was reading Oswald Chambers one day and he was explaining the difference between having a master and being mastered (God doesn’t make/force us do the things He wants us to, as if we were robots or something). Though it is a hard race with a huge cost this is one of the reasons that makes having God as my Master the thing I desire above all else:

Oswald Chambers writes, “to have a master means that here is one who knows me better than I know myself, one who is closer than a friend, one who fathoms the remotest abyss of my heart and satisfies it, one who has brought me into the secure sense that he has met and solved every perplexity and problem of my mind. To have a master is this and nothing less.”

GOD IS MY MASTER!

With love from a heart overflowing with praise to God and thanks to you for your prayers and support,

Bonnie

P.S. The mail system in the hospital is not so reliable, so if any of you would like to send cards or whatever you can send them to my grandparents at:

Bonnie Codier
C/O Carberry
Box 9
Moody, Maine 04054

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Saturday, September 30, 2006 11:07 PM EST

Bonnie will be updating soon.....she is recovering from having her femoral line replaced with an IJ (in her neck). She had a fever (103.3) and rigors Thursday morning, but has not had any yesterday or today. She is getting a couple of units of blood today to help with her dropping hematocrit, and she will be starting a low dose of steroids tomorrow to help with the adrenal insufficiency problem. Thank you for your wonderful notes (it looks like caringbridge moved the older ones to another page - but there is a link on the current guestbook page), they have been especially appreciated this week as Bonnie endured some horrible craziness here. She has a lot to write about ;).........

-Mummy



Sunday, September 24, 2006 11:07 AM EST

Hi.....and thank you for the encouragement in the guestbook :).......we have been denied again by the insurance, as they are wishing for Bonnie to stay after she is finished here and discharged until she gets sick again so that she is in the vicinity to be taken care of here (they are under the assumption that she would need to be flown out here every time she gets sick). We are still looking at getting her home to a home hospital sooner rather than later (she wants to be there before her birthday).

She saw an endocrinologist yesterday who is looking at why her labs for adrenal function are off. He thinks she may have a pituitary insufficiency that is affecting her adrenals - or - the fungemia got into her adrenal glands and damaged them. This has affected her thyroid, and other endocrine functions.

Tomorrow, at 11 am EST, Bonnie will have her femoral line (central IV) changed to the other side because the current line is colonized with bacteria. They will take her off of the antimicrobials (caspo and vanco) after 48 hours, and there will be a period of waiting to be sure that the infections have cleared her blood. Once that has been established (12 - 14 or so days), they will put in a permanent port-a-cath. Please pray that the procedure goes well tomorrow, and that there will be no complications. Please also pray that this time off of the antibiotics/antifungals will be uneventful, and that her blood will indeed be clean of infections. As always, also continue to pray that her pain will decrease, and that her GI tract will work so that she doesn't have these obstructive troubles where nothing goes through.

Tuesday (wow - there are a lot of prayer requests here....), Bonnie has an appointment for starting the process to get SSI disability. We have heard that she is very near her lifetime cap on her health insurance, and we are hoping that the SSI folks will see that she needs coverage immediately (especially since she has been dealing with this disease for so long).

We have been getting Bonnie out into the fresh air now and then (taking her out in the stretcher), and she has had some great visits with her Sammy out in the courtyard. Once she is up to it, maybe she'll post some of the pictures her dad has taken of their visits. She's had some other visitors - Grammy and Buppa (we love you sooooo much!!!), and cousins Laura, Tom, and Dahlia (we love you too....and....mmmm, good chocolate!- Thanks!). Thank you also (friend from Michigan) for the Heilman's - chocolate is always appreciated ;)!! Also, a surprise visit from Allison!

Thank you for your prayers, guestbook entries, and cards. Bonnie has had some tough conversations with her doctors, and it's been overwhelmingly stressful. She says this admission has been one of the hardest she's ever had, but she is still trying hard to be a light in a dark world - and her heart's desire is to continually bring God glory in all that she does (especially in responding to all these issues). At some future point, she is hoping to share some of the specifics and stories of what God is doing here.

Love to all,
Mummy






Friday, September 15, 2006 11:07 PM CDT
Still working through options regarding going to AZ. Bonnie still has a week or more of caspo to go, and then a week or so off of the antimicrobials (caspo and vanco), and then they do the blood cultures to see if she is free from infection, and if she is, then they put in a permanent port-a-cath, then recovery, then .......well, we don't have any idea if she will have to stay local until she is strong enough to fly home commercially (there is a big problem trying to set up a home health situation in Maine). The infectious diseases doctor in Mesa has agreed to follow her if she is transferred to Banner Desert, and her PCP is willing to follow her care via hospitalists there, and we are having her cardiologist here get in contact with her cardiologist in Mesa. Hopefully, we could get that all set up Monday......but again, it will depend on her insurance.

Bonnie has been dealing with another illeus (intestines not working) and had a couple of sets of X-rays last night. The extra activity wore her out, and her muscles gave out when she got back to her room and she couldn't even open her eyes or move her arms. She has a bit more strength today, and she had more visitors to brighten things up.

Thank you for continuing to pray, the time gets so long......and Bonnie would love to be nearer her friends :). She loves the nursing staff here, and has definitely appreciated their care of her. Please pray that her gut starts working again, and that this infection will be totally wiped out.

Of course.....more later,
Mummy



Wednesday, September 12, 2006 11:07 PM CDT
Short Update.....Bonnie's insurance decided against getting her to Mesa as they prefer her to finish the treatment at MGH. We are still looking at appealing this, and looking at what the best course actually is for Bonnie. More later................

-Mummy



Tuesday, September 12, 2006 8:07 AM CDT

Hi all.....we are trying to get Bonnie back to Mesa (Banner Desert) so that she can be closer to her friends (and see her doggie too) while she waits out the antimicrobial treatments (IV antibiotics and antifungals). Please pray that the docs involved will be able to work out a transfer that is of the best benefit for Bonnie, and that the docs in Mesa/Phx will be willing to work out a system where they are comfortable calling on the docs here for guidance - especially regarding the mitochondrial stuff. Bonnie still has at least three weeks left of in-hospital treatment. We might be able to get her beck to the valley by the end of this week.........

Thanks for your continued prayers, and wonderful words of encouragement.

-Mummy



Wednesday, September 6, 2006 8:07 PM CDT

A quick update......Bonnie has bacteria growing out in the cultures that they took from her femoral line. They want to start her on Vancomycin, and change her line. Please pray that good decisions will be made regarding treatment and line replacement, and pray that the medical staff will consider the issues that she has with lousy veins and pain associated with that.

Thank you for your notes in the guestbook, Bonnie is so appreciative of all the encouragement and prayer support. Her nurses have been really good with her, and she loves getting to know them. She looks eagerly to when she can come home and see her friends (and she misses her Sammy sooooo much!!).

Our love to you all,
Lyn


Sunday, September 3, 2006 7:07 PM CDT
Bonnie is doing better than she was last night regarding the partial obstruction/ilius issue (and associated pain and swelling). She is still distended, but she has been able to drink small amounts, and had some ice cream.

Please pray for her safety. In the past 42 hours there has been two incidents of major breaks in sterile technique. Yesterday, it involved someone using a paper towel (that had been used to clean blood off of Bonnie's leg) to clean the opening to the lumen in her femoral IV line. Then, today, someone used a flush after letting the IV end fall on Bonnie's skin (picking up all those skin germs) without cleaning it. And - it was too late to go back and rectify the situation - both times.........


We are working with the physical therapist here to get the specifications she needs to order a mechanized wheelchair. We are hoping to set up some sort of fund for this and for a wheelchair accessible vehicle.....so if anyone knows how to do this - fell free to email me - I will welcome the input .


Bonnie's last journal entry before going to Maine Medical ICU.........
Well, unfortunately my condition has worsened. Despite being on three extremely potent IV antibiotics, the infection continues to fester and I keep having major fever episodes (chills, my body shaking uncontrollably, horrible pain, and usually taking 4-6 hours for the fever to come down even a little even with Tylenol and Ibuprofen). My kidneys are also acting up, causing a lot of pain, and my legs stopped working about two weeks ago. Now I can't get up the stairs or anywhere else, unless I stay resting on the couch all day - then I might be able to walk to the bathroom with two people helping me. To get up the stairs I have to scoot up on my bum like Gretel did in the Sound of Music while singing the goodbye song, thus we have dubbed the movement "greteling up/down the stairs", although some days have turned into only upstairs days if I can't Gretel-it. I don't know if this will be permanent or not, I hope it's just worse because of all the back and forth to doctors. As much as I have been trying to ignore it, this is probably my new baseline. If, (and that's a big if) we can get this infection under control I may improve a little, but it doesn't look like I'll be able to get back to where I was even two or three years ago, and so now I need to find ways to live despite feeling so bad and being in such poor condition.

Toward that end it looks as if I'm at the point that I never ever thought I would ever be at, and that is the point where I need a mechanical wheelchair to get around and some sort of conversion car to accommodate it. It was good to see the docs in Boston, they needed to be apprised of how I'm doing - especially in case something happens at home, but I didn't walk away with a
"three-step plan" on how to make me better. I was given a speech about not putting off until tomorrow what I could do today in response to my question about what I could expect for how this disease will progress. Many of the docs were surprised that I have survived thus far, and it turns out that I am one of the most challenging and severely affected cases that they have ever seen. I guess they don't typically see someone who has every organ and system affected. The nursing staff with one doctor all knew who I was before I had even met them, and they all said that I was "famous" in their office. That office has had group meetings about me and have been tracking me since last fall. I also had the chief of pediatric nephrology say that he admired me, not only for surviving but also keeping such a strong and positive spirit. I've already had a bunch of tests and I'll be having even more when I get back home. I'll let you know more specifics in the next note.

I'm hoping things will get better when I can recover a bit. Since coming here we've spent half the week in Maine and half in Boston seeing multiple doctors multiple times. Often we couldn't even cover everything going on currently during the first visits (even though they were all 2-3 hours long) and I'd have to go back to finish. Once I get all the results back, including the multiple ones that I'll be having in Phoenix, then hopefully we'll be able to find some ways to help me live a bit more; I'll always need lots of rest, but this is a terminal disease and no one except God knows how much time I have left, and I want to find ways that will help me make whatever time I have left rich and full. There were so many times even here in Maine that I probably should have been admitted, but I know here they wouldn't know what to do with me and I'd just get stuck being admitted there so I opted against it because I don't want to waste any of that time. I am very fortunate to have parents willing to work with me to keep me out of the hospital if at all possible so that I can be more comfortable, even though severity of my condition would require it. It's very hard on them, there is a lot of work. Even for this trip Mummy has been pushing me around everywhere in the wheelchair and taking care of all my infusions and everything and Dad has commuted back and forth between Phoenix and Boston to be there for my appointments and to give Mummy a break and change the huber needles in my port. I know the sacrifice, and the expense, and that's just another way that God has blessed me.

I need to get going because I'm not feeling very well, but I'll write more about what's been going on later. It's been pretty crazy, a lot of things have gone awry (we joked that there was a black cloud hovering above) and I have a bunch to tell you about what specifically the doctors have said. In the meantime please know how much I love and miss you all, and how grateful I am for all your prayers and notes in the guestbook. We plan on flying home
Monday so that we can spend a few days with my brother before he starts med school and because there are a lot of consults, tests, and interventions
that we need to get going on.

I hope you all have a terrific week, and enjoy the last bits of summer.

All my love,
Bonnie

---

Saturday, September 2, 2006 10:47 PM CDT

Bonnie had increased belly pain and distention today, and the doc is saying that it sounds and looks like a partial obstruction in her small intestine, so she is not to eat and they are increasing her IV fluids. Hopefully it will resolve by tomorrow so she can at least eat a little and not have the added pain. Other than that, she continues with the caspo........

Thank you for the encouraging entries in the guestbook........

More tomorrow......

-Mummy

---

Thursday, August 31, 2006 3:00 PM CDT

Another quick update........there is a question of whether or not Bonnie's insurance would rather she stay here - than to fly to a local hospital at home. Also, they are looking at different ways to get more nutrition into Bonnie (her gastropareisis prevents her from eating enough calories.



More later.......
Mummy



Tuesday, August 29, 2006 11:00 PM CDT

Hi all, thanks for the guestbook messages.....Bonnie very much enjoys listening to them. The news currently is; Bonnie will be getting the Caspofungen for the next four weeks. We were told that the tricuspid insufficiency is being caused by a problem with the stitches from her anuloplasty (her open heart surgery). It will need to be watched closely, but she doesn't need surgery to repair it right now (and no one would do the surgery at this point because of the infection). Our insurance would like to have Bonnie ride out the rest of the four weeks at one their hospitals at home. We thought we could have her come home, but it looks like the home health agencies won't accept patients with a femoral line (IV line in the upper thigh). If she is transferred to the hospital close to home, she can only go to a telemetry floor or an ICU because of the femoral line. There is talk that it might be difficult to get a med evac flight because of the line, but we're hoping that will not be the case. In any event, somewhere, somehow, Bonnie will continue getting the caspofungen for 4 weeks, then she will be taken off of them to see if she is free from the infection. Then, if she is infection-free, she will have a new line placed. Of course, all this is subject to change, and we have no real timeline yet. Bonnie seems a little stronger, and I finally washed her hair (she was wiped out after that). Thank you for all your prayers and support. She had more fungal cultures drawn today, and we are hopeful that they will be negative.

Again, I'll post more......probably tomorrow :),
Mummy




Sunday, August 25, 2006 11:10 AM CDT
We found out this morning that Bonnie's blood cultures have grown out another species of the glabrata that is resistant to the Fluconazole. So....they are switching her back to the Caspofungen. They will closely monitor her liver enzymes since they feel it was the Caspo that has her alk phos higher than normal. The doc said that it is better to have the liver trouble versus continuing with a fungemia that causes sepsis (what she's been fighting).

http://www.sepsis.com/family_friends/understanding.jsp?reqNavId=5.2#what

We are looking forward to seeing family visitors today......

More later,
Mummy


Friday, August 25, 2006 11:10 PM CDT

No real "news" from here, Dave took the early flight back to Phoenix, and was there for Sean's Commissioning ceremony this afternoon (HOOAH!). Dave's sister and brother-in-law flew up from Virginia - it is really good to see them :). Grammy and Buppa visit often (I think it took them over 5 hours to get back home to Maine with all the traffic today). Bonnie's TEE went very well (I think we've counted over 20 of them so far). She said that the cardiac anesthesia doc was the best so far - she had a very gentle wake-up when it was all done. We are still waiting on the results, the doc who did the test suggested that maybe what looked like vegitation might in fact be stitches. She does have the tricuspid insufficiency (Bonnie remember the doc telling her that the stitches were too tight and were keeping the valve from working properly). We'll just have to wait and see what the cardiologist sees and decides on Monday. Meanwhile, she will continue on the antifungals, and hopefully rest up over the weekend and get some strength back. Fighting this infection has worn her out, and she has been sleeping 18 - 20 hours a day.

Thank you for your encouraging notes (I read them to Bonnie) and prayers.

More later,
Mummy

Friday, August 25, 2006 1:10 AM CDT

I found the notes from Bonnie......and she was moved up to floor 21 (room 2104) this afternoon. Her phone # is: 617-724-6161.

Things she wanted written here:
- Her electrolytes have been leaking more than usual and we don't know why.
- She had more blood to boost her blood levels.
- Cardiology has agreed with Infectious Disease that she needs a TEE (camera put down her esophagus to look at her heart from the stomach view).
- Her liver enzymes keep going up even though she is not on TPN (and hasn't been for the past week).
- Her heart has been feeling bad, and her stomach has been distended and hard, and she has had a lot of swelling (edema).

She wants people to know that, "I hate this, and it couldn't have happened at a worse time because I was planning on spending some time with Sean before he started medical school (he started yesterday). This is a big deal to me, as it is one of the most severe and fragile places I've ever been (similar to having open heart surgery last year). Please pray that God will take care of us."


We're not sure when, but Bonnie will have her TEE tomorrow, and she needs prayer that it will go smoothly, and that she will not have any bad reactions to the anesthesia.

Of course, we'll write more later. At the moment, Bonnie is worn out, but sends her love to everyone.

-Mummy


Thursday, August 24, 2006 1:10 AM CDT

Bonnie remains in the ICU, and is still quite weak. She had a fever this evening, and she was started on lasix to help with her blood pressure and edema. She has tricuspid insufficiency (part of her heart) and that may be causing some of her symptoms. She will have a TEE on Friday to see if what was seen on the echocardiogram are vegitation on her tricuspid valve (if you recall, she had open heart surgery last summer to get the vegitation out of her heart). We were told that there may be some tough decisions coming up, so we would love folks to pray that God will give us wisdom and peace about what those decisions will be. Bonnie had me write out a list of things to write tonight, but I haven't a clue where it is (I know I'll find it by tomorrow), so I will add her thoughts to tomorrows update...........

-Mummy


Monday, August 21, 2006 7:10 PM CDT

Bonnie is still in the M ICU, and she had a tough time with the surgery. She had to wait until 2:30 am to go down to the OR, and she was back to her ICU room at 4:40. No one had changed her pain meds, so she was not adequately covered - thus she spent until 10 am crying in pain (it was a very long night). The medical team finally came in and upped her dosage, and she was taken down to CT for a scan of her spine (no results yet). She also had an echo cardiogram that showed unfavorable changes in her heart. The cardiologist needs to look at the films himself. Her cultures continue to come back positive for the fungemia, and she still has fevers. Hopefully, we'll have a better idea of what the future will bring when the docs get together. There are so many body systems to deal with .......Her nurse's, for the most part, have been good. When she moves to a medical floor (out of ICU) it will get tricky because the nurses have more patients (in ICU they have only one or two).

If you can, please leave a note or send a card of encouragement to Bonnie. We arrived with the clothes on our backs (Bonnie's Grammy and Buppa have been bringing me my clothes from their house in Maine), and her room is stark bare. I'm looking at getting some silk flowers or plants (ICU does not allow fresh flowers or plants.....too many germs I guess) to perk it up.

We appreciate all your thoughts and prayers.....
Lyn



Sunday, August 20, 2006 7:10 PM CDT

Hi All,
Today we found out that Bonnie needs to have surgery to get her double Port-a-cath out. Her blood is pretty thin because she is on blood thinners (coumadin) to prevent clots. However, she has to have thicker blood before surgery, so she has been getting plasma that will thicken it up. Also, she received some more blood (red cells) today. It looks like the plan includes removing the port, and finding a new access temporarily until the fungus in her blood clears up. Then they will look at putting in another access device (like the port-a-cath). Meanwhile, she remains in ICU, and they are maintaining her potassium and magnesium levels with IV supplements. She is supposed to have a CAT scan for her spine, and she will see her neurologist tomorrow, have her heart echo (to see if there is fungus in her heart), and see a cardiologist. She still feels bad, and has stated that she is wondering if she can pull through this. Of course, we know that God has His timing for everything, and only He can give Bonnie the strength she needs to get through this. Please pray for compassion from her doctors and nurses, and wisdom to do what will be the best for Bonnie. She especially needs prayer for pain control. The surgeon will be cutting through areas that have multiple scars (due to the many surgeries, pacemakers, and access lines) that she has. We'll update more - hopefully tomorrow.

Thanks from all of us,
Lyn (AKA Mummy)



Saturday, August 19, 2006 7:10 PM CDT


Thank you for your prayers for Bonnie's health. She is still quite sick and is in the ICU at Mass General because she has yeast in her blood (and they are closely watching her sepsis issues). She is a little more coherent today, but is in a lot of pain. She is sleeping most of the time - in between the doctors, nurses, and tests. Her fevers, for the most part, are being controlled with Tylenol, Ibuprophen, and antifungal IV meds.They would like to rule out infection in the brain and heart, and her eyes look like they are not infected (yay!!). She feels horrible, and has pain up and down her spine, neck, joints, belly, and head. It looks like she'll get a blood transfusion tonight. It's been a relief having both Sean and Dave arrive for the weekend, and Grammy and Buppa have been coming down to visit also. Not Sammy though....

Please pray that Bonnie will get understanding/compassionate nurses, and get better quickly.......

-Lyn (Bonnie's Mummy)




Thursday, August 17, 2006 2:10 PM CDT

A quick update, Bonnie is having another "go 'round" with the fevers (103.8) and shakes. Please pray that the pain will subside and that she will feel better soon........thanks......


Wednesday, August 16, 2006 10:10 PM CDT


Just to let you know, this note was supposed to be posted yesterday. As Bonnie was writing it she started feeling really bad. Less than a half hour later another fever spiked and she started having a lot of trouble, including with her line having new issues and lots of heart arrhythmias. Please be praying for her as she is in excruciating pain, and that we'll be able to get her ready to fly home on Monday. Thank you.

*New Pictures in the Photo Album*

Well, unfortunately my condition has worsened. Despite being on three extremely potent IV antibiotics, the infection continues to fester and I keep having major fever episodes (chills, my body shaking uncontrollably, horrible pain, and usually taking 4-6 hours for the fever to come down even a little even with Tylenol and Ibuprofen). My kidneys are also acting up, causing a lot of pain, and my legs stopped working about two weeks ago. Now I can't get up the stairs or anywhere else, unless I stay resting on the couch all day - then I might be able to walk to the bathroom with two people helping me. To get up the stairs I have to scoot up on my bum like Gretel did in the Sound of Music while singing the goodbye song, thus we have dubbed the movement "greteling up/down the stairs", although some days have turned into only upstairs days if I can't Gretel-it. I don't know if this will be permanent or not, I hope it's just worse because of all the back and forth to doctors. As much as I have been trying to ignore it, this is probably my new baseline. If, (and that's a big if) we can get this infection under control I may improve a little, but it doesn't look like I'll be able to get back to where I was even two or three years ago, and so now I need to find ways to live despite feeling so bad and being in such poor condition.

Toward that end it looks as if I'm at the point that I never ever thought I would ever be at, and that is the point where I need a mechanical wheelchair to get around and some sort of conversion car to accommodate it. It was good to see the docs in Boston, they needed to be apprised of how I'm doing - especially in case something happens at home, but I didn't walk away with a
"three-step plan" on how to make me better. I was given a speech about not putting off until tomorrow what I could do today in response to my question about what I could expect for how this disease will progress. Many of the docs were surprised that I have survived thus far, and it turns out that I am one of the most challenging and severely affected cases that they have ever seen. I guess they don't typically see someone who has every organ and system affected. The nursing staff with one doctor all knew who I was before I had even met them, and they all said that I was "famous" in their office. That office has had group meetings about me and have been tracking me since last fall. I also had the chief of pediatric nephrology say that he admired me, not only for surviving but also keeping such a strong and positive spirit. I've already had a bunch of tests and I'll be having even more when I get back home. I'll let you know more specifics in the next note.

I'm hoping things will get better when I can recover a bit. Since coming here we've spent half the week in Maine and half in Boston seeing multiple doctors multiple times. Often we couldn't even cover everything going on currently during the first visits (even though they were all 2-3 hours long) and I'd have to go back to finish. Once I get all the results back, including the multiple ones that I'll be having in Phoenix, then hopefully we'll be able to find some ways to help me live a bit more; I'll always need lots of rest, but this is a terminal disease and no one except God knows how much time I have left, and I want to find ways that will help me make whatever time I have left rich and full. There were so many times even here in Maine that I probably should have been admitted, but I know here they wouldn't know what to do with me and I'd just get stuck being admitted there so I opted against it because I don't want to waste any of that time. I am very fortunate to have parents willing to work with me to keep me out of the hospital if at all possible so that I can be more comfortable, even though severity of my condition would require it. It's very hard on them, there is a lot of work. Even for this trip Mummy has been pushing me around everywhere in the wheelchair and taking care of all my infusions and everything and Dad has commuted back and forth between Phoenix and Boston to be there for my appointments and to give Mummy a break and change the huber needles in my port. I know the sacrifice, and the expense, and that's just another way that God has blessed me.

I need to get going because I'm not feeling very well, but I'll write more about what's been going on later. It's been pretty crazy, a lot of things have gone awry (we joked that there was a black cloud hovering above) and I have a bunch to tell you about what specifically the doctors have said. In the meantime please know how much I love and miss you all, and how grateful I am for all your prayers and notes in the guestbook. We plan on flying home
Monday so that we can spend a few days with my brother before he starts med school and because there are a lot of consults, tests, and interventions
that we need to get going on.

I hope you all have a terrific week, and enjoy the last bits of summer.

All my love,
Bonnie

---

Saturday, July 29, 2006 11:00 PM EST

Bonnie had hoped to update by today, but she has had trouble with her health......last week she was so weak, her legs totally gave out and she had to be carried to her room. She was supposed to see one of her docs in Boston yesterday, but he canceled due to family matters. She has an EEG (sleep deprived) coming up on Friday. Today she had horrible kidney pain, fevers, and belly pain and has been unable to do anything but try to sleep. Her body is having trouble regulating fluids, and she gets dehydrated very quickly (Her IV fluids were increased to try to keep up). Please pray that she gains enough strength to be able to travel to her doc appointments. As soon as she is able, she will update......
......................-Bonnie's Mummy

Wednesday, July 19, 2006 0:33 AM CDT

*wedding pictures coming soon!!!*

Hello everyone,

It’s hard to believe that about a week and a half ago I was in critical condition in the hospital, and now I’m falling asleep in a comfy bed with the doors open to the sounds of crashing waves in Maine. The events that occurred Thursday and Friday a week ago were enough to scare me in a way that I had not experienced in a long time, which is quite a feat, considering how much I’ve been through not much scares me anymore. How I became so dehydrated despite being on continuous fluids is a mystery to me and everyone else, and it was amazing how fast I became so sick. Unfortunately that seems to be the trend now, that I’ll be somewhat stable and then just plummet in a blink of an eye. With my electrolytes so far out of whack (especially having my Potassium bottom out) created so many problems. Since all my muscles were so spastic all night the ones in my GI system went into overdrive and caused me to vomit literally every other minute (known as intractable vomiting), but then it shut down completely giving me an ileus, along with some other symptoms that were too unpleasant and graphic to mention here (this is a family site!! JK:-). Likewise, my heart, even with my pacemaker, was going nuts, causing tons of ectopy and arrhythmias, even bouts of v-tach, which, when prolonged, is fatal. Every doc we show the EKG to (even in Boston) is pretty shocked. All this caused extraordinary pain, such that even the pain meds I’m already on didn’t feel like they were even touching it.

I was frustrated and confused why all this was happening the day before we were supposed to leave. I really didn’t understand why God was allowing this, especially when I felt I had been so good to rest up and not push it at all during the week, even having everything planned out so that I only did a little each day. We did come away with more knowledge though, and hopefully it will help in the future to know ahead of time how fast things can go downhill.

I’ve been having difficulty finding a good ID guy that will accept me in Phoenix, and while I was at the hospital I got hooked up with one that I’ve been thinking of going to that I’ve heard is good. I didn’t actually see him but he is willing to take me on and was the person who put me on the third IV antibiotic that I am now on. I’ve been fighting this bacteremia since the beginning of June now, and don’t seem to be making any headway. In addition to the fevers I have this rash on my hands, the same kind of rash that I got last year when I struggled with bacteremia and endocarditis, only now it’s worse than it ever was last year and no one really knows what to make of it. I see Dr. K, the mito metabolic expert in Boston on Friday so hopefully he will have some answers. I really should have been admitted for this infection a while ago, but I would never have made it out here if I had been. My internist in Phoenix is going crazy since his absolute limit for letting me stay at home was passed when I was put on the third IV antibiotic, once I hit three than I have to be admitted no ifs, ands, or buts. I am in a VERY unique situation, one that would not be possible if I didn’t have the incredible parents that I do. My parents literally do the work of at least three full time nurses per day, and anywhere I am basically becomes a hospital. I think that’s something that most people don’t really grasp, that my acuity and the level of care I require for most people would mean that they would have to be inpatient, and I barely kept my sanity after eleven months of admission, two full years now would have put me over the edge long ago. So I have huge appreciation for my parents, and they deserve so much respect from everyone. I think it is remarkable that my mother is willing to give up choir, career opportunities, “fun” shopping, or not have a perfectly clean house all the time, even though she would enjoy and want those things and so much more, just so that I can be more comfortable at home instead of being in a sterile hospital setting.

I have been reminded a lot lately of God’s provision, because even though I’m feeling so bad that I can’t even describe it, and wasn’t even sure how I would be able to make it out here, God did get me here. I wasn’t even sure I’d be able to survive going to these appointments, but God got me through it. I saw Dr. R for GI first on Thursday, and since I had missed the Tuesday anal-rectal manometry test (we were supposed to fly out Saturday but didn’t get to until Wednesday) he ended up rescheduling it for the next morning. He was pretty sure my pressures would still be high and that I would need botox injections to fix it. We didn’t go over as much information as I had hoped, but I think he just really wanted that test result as well as a bunch of other various labs before we could really talk and figure out what to do. He wants to see me once every week that I’m here, so there should be ample time to go over results and figure things out. He did say though that I just may need more healing time, something that I wasn’t ecstatic to hear since I want to get rid of the pain ASAP, but he may be right. We’re also going to work on my TPN formula since I seem to be having difficulty with that (gaining weight and being puffy but still having low pre-albumin and such, and balancing the vits and electrolytes) so there will be a TPN nutritionist in with us for this week’s appointment.

I saw Dr. S with neuro-genetics immediately after GI and had a great talk with her. She was very helpful and I was reminded and relieved at how great these docs are. They treat you like a real person, and they act like regular real people themselves, so different than any other place I’ve been. I actually left that appointment smiling, the most fun I had ever had during a neurology visit ever! We had some laughs (for some reason we were all very goofy that afternoon) but also dealt with some really important stuff as well. She re-confirmed the muscle biopsy reports and went over a lot of very technical genetic stuff; she also had a fellow in with her and he was very intrigued with everything going on with me. She also is wondering if I’ve been having some seizure activity, or possibly even stroke-like episodes, so among various other labs she wants me to have an EEG before I leave.

I saw Dr. Y from endocrine the next morning (Friday) before the rescheduled anal-rectal manometry. This is another doctor that I really appreciate and enjoy; so warm and friendly, but sooo smart. She was concerned about the hypertension I’ve been developing over the last four weeks (usually I run below normal, now I’ve been getting up to 160ish/106ish), as well as severely fluctuating glucose (low as 48ish, high as 168ish, although once it came back at 323), as well as a host of other problems. Since I’ve been so sick I haven’t really been able to see all the doctors that I’ve needed to back home; I’ve really needed to be back in touch with and re-worked up by hematology, pulmonology, pain management (I just found out the day before we left a doctor that is willing to accept me), and others, but especially nephrology. So Dr. Y is including in her labs and tests a bunch of renal stuff, and once those come back she’s probably going to run them by this nephrologist who only deals with electrolytes. I guess he gets all the most difficult cases worldwide and does all the electrolyte lectures with the Harvard residents, so maybe he will have some ideas. She did say for sure that I have poly-cystic ovarian disease (I’m not sure if that is different from the syndrome or not, but she was very careful to say disease not syndrome) and endometriosis, which they saw during surgery. So like I said, lots of various forms of labs and she also wants an abdominal ultrasound. If anything endocrine-wise comes back abnormal in my tests then I will definitely see her again before I leave.

The anal-rectal manometry, while unpleasant, showed that my pressures were fine, so no botox injections, yeah! However, now Dr. R has to come up with another idea on how to fix what’s going on. So, we’ll see what transpires during this next set of appointments. Please be praying for Friday, that Dr. K will be able to help us figure things out and hopefully find ways to improve my quality of life, and especially currently to find the source and cure for this awful infection I have. I’m really hoping that this is not my new “normal”, I am way too sick to continue living like this for any real length of time. Mito is a terrible, terrible disease though, but I am hoping that these doctors can provide some help, and that if I can get a break from these infections and other things that set me back, that just maybe I’ll have a chance to heal for all my recent major surgeries.

Another huge prayer request is for tomorrow. As I’ve written before, our insurance has been frustrating us lately and they decided not to cover out trip here; we’ve had all sorts of trouble trying to find out how much coverage I have left total and even here just trying to work with the docs and see what we can do at home to help cut down on costs. The tough part with the latter is that even if I had some of the tests at home, such as the EEG for example, even if I could have it done in Phoenix, no one would know how to read it looking for stuff that goes on with mito. I was talking with my internist and he told me that it would be impossible to have it done back home because no one would know what to look for, so he wants me to have everything done here. And that’s the thing, the insurance keeps saying that I can have anything I need done in Phoenix, whereas my Phoenix doctors keep saying “go to Boston, we don’t know what to do, we need guidance, we need them to help us and tell us what to do, there are no resources in Phoenix”. And one of the complicating things is that there is a new medical director; the old one was great, in fact it was his idea to send me somewhere to get help, but this new guy doesn’t know or understand my case at all. So after my internist called the medical director they have decided to have another meeting to re-evaluate coverage of this trip (which could possibly impact whether future trips are covered as well), and this meeting will be tomorrow (Wednesday). So if you all could please be praying about this, we are so hoping they will overturn their decision. God has really blessed us with some financial help from the amazing church body of Christ, and we are trying to be good stewards of what we have been entrusted with, but costs add up as far as hotels, my dad commuting, and all those little (and big) things that add up, so it would be so helpful if we didn’t have a major hospital bill on top of everything else. We were fortunate to get free tickets on Southwest for me and one caregiver, but we found out that you can only take advantage of that once a year. I’ve heard from a couple of people brainstorming ideas, or who have contacts who may have ideas, and we may need to take advantage of that for future trips, since I’ll probably need to go out to Boston at least once more this year. But whatever happens, as I have seen so much this week, God will provide for it. He provides for the flowers that they can bloom, and for the sparrow in the sky, how much more He will provide for me, His daughter!

I didn’t initially intend for this update to be so long, but I know so many of you pray for me so diligently and I am eager to tell you of the fruition of those prayers. I am so appreciative that you check in on me and sacrifice your time in reading what is going on in my life. So if you are still awake :-), thank you so much for your thoughts and prayers, and I will write again as soon as I feel up to it.

All my love,
Bonnie

P.S. I’ve heard that some of you copy this off of my site and forward it out in emails to update people, and I am really grateful for anyone who will pray for me and my family, but if you forward it out if you could please direct people to come to the site as well because I really enjoy and am greatly encouraged when people sign the guestbook (it gives me such joy and strength to read peoples notes and be touched by their words), and it is easy to forget when you receive it by email. Plus, there is also a counter that records how many “hits” there are to the sites, and I think it’s really neat and a cool testimony to see God’s people being faithful to each other. Thanks so much! :-)

---

Monday, July 17, 2006 11:35 PM CDT

Bonnie made it to Boston, and will update tomorrow as to what has transpired with her doc appts. Thanks for all your prayers.........



Friday, July 7, 2006 12:35 AM CDT Hi all,
This is Bonnie's Mum.....Bonnie spent last night fighting another fever. She had intractable vomiting, and her muscles had terrible spasms. I took her in to the hospital this morning (thanks for helping me get her down the stairs and out to the car Kim) and she was dehydrated and her potassium was so low, she had a lot of EKG changes (and her heart felt like it was going crazy). She had an ileus (temporary absence of the normal contractile movements of the intestinal wall) which caused her lots of pain, distention, and nausea. She also had a fever of 101.3 despite two IV antibiotics and around-the-clock Tylenol and Ibuprofen, so they took some more blood cultures and added a third IV antibiotic. She also got three liters of fluid, IV potassium, and pain meds. The doc looked at keeping her overnight, but told her he thought she would get better nursing care at home (there is a nursing shortage here), plus she wouldn't be exposed to more germs. So, tonight we will see how she does, and will hope that her body starts the recovery process quickly. Obviously, we can't take her on a plane in the morning, so we are looking at when we can get her on a plane so that she can still make it to her appointments with the doctors in Boston. At least this didn't happen on the plane........
Thank you for your prayers, and encouraging words,
Lyn




Monday, July 3, 2006 2:35 AM CDT

I’m going to try to make this short, comparatively, since I’ve had another major high fever episode and am just not feeling well at all. Thursday night is when the high fever and chills hit again, the fourth major fever episode since this bacteremia/infection started almost four weeks ago. More blood cultures were taken, even though I’ve still been on the antibiotics, but we don’t have the results yet. Not sure where this infection is coming from, although it’s pretty much been established that it’s not coming from my central line. I have the upper and lower endoscopy tomorrow; the doc doesn’t know about the high fevers yet, so I don’t know if that will affect his decision whether or not to do the procedure. It would be best if we could have those results before we left for Boston.

Thank you so much to all those who responded to my request about flight stuff. Southwest managed to come through for us and I’ve been approved. I was so encouraged by your responses, and for those who are still brainstorming regarding pilots or planes please know that I will need to make trips like this several times a year, so even though I think we are pretty much set for this weekend (we are praying everything goes through smoothly) we welcome any of those ideas or thoughts for the future. All the help and prayers that have been offered have truly warmed my heart and have given me strength and hope to keep going. There are no words to communicate how appreciative I am, or how much you all mean to me.

Friday morning was interesting. As soon as we found out that we had been approved for a flight for this trip we found out that our insurance has decided not to cover the doctors appointments in Boston. They said that they aren’t convinced that I actually have mito and therefore there is no reason for me to go back. The doctors in Boston were very insistent that I definitely have mito, and we tried to tell my case worker at our insurance that you can’t get any more conclusive than a positive muscle biopsy, but she said that it didn’t matter. So I’m hoping that maybe one of the docs that diagnosed me in Boston could call and tell them that I do have mito, but it sounds like even if they heard that it wouldn’t make a difference; it sounds like they are just unwilling to cover mito patients.

So, we have three options. We either a) cancel the trip, which is pretty unlikely because these doctors are booked so far in advance, that it would be hard to get future appointments b) we postpone the trip until somebody can convince the insurance that I have mito, but we’d still have the same problem as a), or option c) the costs for my appointments and procedures in Boston fall into the indemnity category, which means that the insurance will pay for 60 percent we pay 40 percent (this category has a cap which I am quickly approaching), and it sounds like this is probably the most likely option unless we can convince the insurance company this week (which will be difficult since most businesses are taking Monday and Tuesday off for the holiday). I’ll never understand why insurance companies are so difficult and oftentimes greedy. Don’t they understand that they whole point of their job is to pay for medical stuff for people who need it? Needless to say, we were not expecting to hear this information (we expected they would certainly approve of the doc visits since they suggested and approved them in the first place – to get the diagnosis), let alone so close to our departure time. God will take care of this though; He has always provided everything I have ever needed.

I really love you all, it was encouraging to hear from so many of you and I was more than touched by so many of your generous offers of help. They will not be unappreciated, that’s for sure! Please pray that tomorrow’s procedure will show why I’ve been having internal bleeding and pain, and it would be great if it could give us some sort of idea about where this infection is coming from. My brother is flying out to Maine tomorrow, so please pray for safe travel for him and energy and endurance for us as we prepare this week for the trip. I’ll update you again when we find out more info. Thanks in advance, and my love and prayers to you all.

Hebrews 12:1b-2
Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before Him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

At the cross, at the cross
Where I first saw the light
And the burden of my heart rolled away
It was there by faith I received my sight
And now I am happy all the day!

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Thursday, June 29, 2006 3:46 AM CDT

Hi there folks,

First of all I want to say thank you for all your prayers. I have had a very tough few weeks and am still struggling. I’ve had three major fever episodes during these last few weeks despite being on heavy antibiotics and Tylenol and Ibuprofen 24/7 and even though I’m still on those meds I still am having low grade temps and feeling awful.

The main reason for this update though is that I have a huge request. I have to go to Boston in a little less than two weeks to see my docs there. I’m just not getting answers here (now that I have a solid diagnosis instead of saying that they don’t know what’s wrong with me now they just say they don’t know what to do) and every day I’m fighting to stay alive. It’s been very discouraging and hard. The other trouble, and now’s the time for the request, is that I’m having a difficult time finding a way to get to Boston. We’ve talked with Angel Flights and since it’s such a long distance the only thing they could do was offer a ticket on a commercial plane, which would be okay but we’ve had difficulty figuring out if I’ve been approved for that or not. The other thing is I’m a bit nervous about flying commercially since it is so hard going through security and the airport, and even just being in those small seats with so much medical equipment, it’ll just be super difficult. Even though I’m still dealing with infection issues and am not quite medically stable it’s not feasible for me to be medically flown out since I’ve already used up most of my insurance. So if we need to just purchase regular tickets like if we were going on vacation then we’ll just have to do that and make do, but if any of you out there who are reading this have any ideas, or even if you know anyone else who could possibly help us out, please let me know. I know this is a lot to ask, but we are willing to entertain and are grateful for any ideas or options if there is anyone out there who could contribute in any way. We are pretty new at this whole thing of going across the country to see doctors and get treatment, so whatever information would be helpful (anything from flying options, either private or commercial, to helpful little tricks for traveling with so much extra stuff and a person who needs to be carted around and can’t really help out – me). So if you have any ideas please email me at bonniebelle@cox.net probably by Saturday or Sunday at the latest, since we are hoping to leave sometime next weekend. We initially were going to leave later since most of my appointments are later but recently it was decided that I need to have another procedure and it had to be scheduled earlier. Thanks in advance for any info.

Another thing that I would really covet your prayers about is just getting ready for the trip. I saw a new GI doc today and he wants to do both an upper and lower endoscopy on Monday. He seems like a pretty nice doc, although was kind of overwhelmed with my situation, although that’s probably better than some other reactions he could have given. But in addition to those procedures I also have to see a few more docs before I go and get ready for the trip, and given my current condition I’m a little nervous about how this will all come together. So please be praying for me, and my family, as we try to get this all together. I really wanted to go back to Boston doing much better and be there just for a check up, but things have not worked out that way and there are so many things we need answers for. Like I said, it has been very difficult these last several months, and to be honest it gets so hard to keep fighting through so much pain and sickness for months on end with no answers and no idea when or if things will ever get better. I am so aware of how short life is and it is difficult to see so much of it spent this way. I’m still holding God’s guiding hand though, it feels like there is fog all around me and I can’t see anything, but I’m holding onto His hand and inching forward, knowing that He can see everything around me and my life like it was sunny clear day.

I miss a more normal life, mostly because all of you are there (in "normal land"). Please know that I think of you all often, and you all have my love, thoughts, and prayers. Your guestbook notes are so encouraging, probably more than you realize, and please know how much I appreciate all of your thoughts and prayers.

All my love,
Bonnie

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Wednesday, June 21, 2006 11:59 PM MST

Hi all.......Bonnie's fevers have not gone away, and one of her antibiotics has been doubled (rocephin). She feels lousy as her body goes from being very cold to being hot and sweaty......back to cold. She had a blood transfusion on Friday because her blood counts had gotten very low. We will keep you updated, thank you for keeping her in your prayers, and for leaving encouraging notes in her guestbook (I've been reading them to her).
-Lyn



Wednesday, June 14, 2006 3:02 AM CDT

Bonnie is still fighting fevers, rigors, and feeling terrible (as well as experiencing a lot of pain). Please pray that she soon will get relief, and that her blood infection will be overcome with the antibiotics. Her cultures grew out Klebsiella pneu. out of both ports and peripheral samples.

More later,
Bonnie's Mummy



Wednesday, June 7, 2006 2:02 AM CDT


Hi again,
Bonnie's blood cultures are already growing out gram negative rods, and she still is pretty sick with fevers up to 102.3. Her doc added another IV antibiotic - and we are hoping it will get her fevers down. We'll keep you posted.......please pray that she gets better quickly, and that she'll regain her strength.
As always, thanks,
Lyn



Tuesday, June 6, 2006 3:21 AM CDT


Hi all,
This is Bonnie's Mummy writing a small update.........right now Bonnie is fighting yet another infection (with a fever of 104.7 at the moment). Please pray that she will get through this quickly. She's had blood cultures drawn, and has started back up on the IV antibiotics. She's feeling pretty sick, and hurts all over. She is supposed to see her new GI doc (Tuesday), but she is too sick to travel there.
More later, and when Bonnie is feeling up to it - she will post some new pictures of the wedding in which she was privileged to be a part of.

-Mummy

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Friday, May 19, 2006 4:28 AM CDT

Well obviously I haven’t been able to fulfill my desire to update more frequently; a bunch has happened. One of the great things that’s happened is that my brother has been accepted into medical school! He will start at Arizona College of Osteopathic Medicine at Midwestern University this fall; we are so proud of him and he is really excited. Also, my grandparents are back home in Maine after spending the last five months with us. They were so helpful and I got to spend a lot of time with them, which I really enjoyed – hearing their stories, finding out what they think of things, and just talking about life in general. They are such neat people and I really love and appreciate them.

I hope you all had a great Mother’s Day, and although this is a bit belated I just wanted to thank my mother for all of her support and guidance. She is such an amazing person, always seeking out those who need help or friendship that may be passed over by others. She is the most selfless person I know, and I’ve learned so much by her example. Everything I have ever done, been through, or been involved with has somehow been touched by her influence, and she has this light about her, and a genuineness that really connects with people. I LOVE YOU SO MUCH MUMMY!

It seems like I’ve had a lot going on and nothing at the same time. I’ve had a lot of appointments lately. Last week I had my IVIG infusion that took about nine hours at my immunologist’s office; hopefully next time I’ll be able to have it at home so that it can be infused over a long period of time, which seems to cut down on side effects. I still got pretty bad headaches afterwards, but not the meningitis that I got last time. I also spent another seven hours at the hospital last week getting a blood transfusion. I’ve been quite anemic for a couple of months now so I got two units of packed cells, which bumped up my H&H, so we’ll see how long it stays that way. After the transfusion I had an echo to make sure this infection hasn’t spread to my heart. It doesn’t look like it has, and I just finished the course of IV antibiotics, so hopefully my fevers won’t re-spike and the IVIG will help prevent me from getting anything else. I’m glad the IV antibiotics are done now; since I’ve had them almost non-stop for the last year and a half my body really hates the chemicals and I always get really sick during and after the transfusions, probably somewhat like when people get chemo.

I’m frustrated and disappointed that things haven’t really improved at all yet. I’m still having troubles going to the bathroom and a lot of pain; one of the docs in Boston wants me to have a couple of tests repeated since one previously showed high pressures and that could be contributing to the problems. It’s hard to differentiate what symptoms are from what problems. My sugars go from one extreme to the other (from 45 up to 164) which is really strange considering I’m still on TPN and have sugar being poured into my veins all day and night. Some of my belly pain could be from my pancreas, but I couldn’t get in to see my new GI guy (that I’ve never met) until June 6. And considering I can’t eat much I still need the TPN, but that’s been causing some of my liver enzymes to go up, and since I generally don’t tolerate TPN that well anyway that also could be the cause of some of these problems. So, we’re still trying to figure stuff out nonetheless. One positive is that I’ve been trying to get physically stronger, even with the pain, so that I can walk down the aisle and be in my friends wedding on June 3, which I am so excited about. I’ll be able to push through and be there no matter what, I’m just praying that God will give me the energy and strength so that I can enjoy it to the fullest.

I found out some very sad news about two weeks ago. A little girl (7 years old) named Natalie, who also had mito, died. I never met her in person, but had corresponded with her and kept in touch with her situation. She was at MGH while I was admitted there, and was waiting for transplants of multiple organs. Please be in prayer for her family, like other families with mito kids they have fought so hard for so many years to keep her alive and it is so hard to now lose her. They do know the Truth though, and even though it was really hard to hear that she passed, I know that she is completely free of any pain or suffering. She was a neat little girl and was very bright; she touched a lot of lives in her short life. If you’d like to leave her family a note you can go to www.caringbridge.org/ma/natalie and sign her guestbook.

Thank you so much for you notes and prayers, the road is long but I keep pressing on toward the goal.

My love to you all,
Bonnie

Isaiah 46:4
Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.

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Thursday, May 4, 2006 7:08 PM CDT

Hi....this is Bonnie's Mummy writing a short update. Bonnie spiked a fever last night (103.8) and had terrible pain, nausea, and vomiting. He doctor had us start up her I.V. antibiotics, and her fever is down today. She is feeling awful, and we are doing everything we can to keep her from having to be admitted to the hospital. Please pray that her health turns around in a hurry! She is exhausted from fighting the infections and the pain all the time.

Thanks everyone,
Lyn




Wednesday, April 26, 2006 3:08 AM CDT

Hello folks. Sorry that it has been so long since my last update; I have still been feeling quite awful and that has been making it difficult to keep up with stuff. I have quite a long list of things that I need and want to do, but so far I haven’t really been able to put any sort of dent in it. I have so many phone calls and emails to return, and if you are one of the ones waiting for a reply please know that I am working on it and will get to it as soon as possible. :-)

I had a scope on Thursday (I guess you can’t really call it a colonoscopy since I don’t have a colon anymore, but that’s what it said on the hospital form) and it showed that the mucosa looked okay, but where they sewed the end of my small intestine to the small amount of rectum that they left is much further down than previously expected, and apparently that can more painful than usual. So after chatting with Boston it seems that the thickening and inflammation in that area is probably what is causing the pain, so I’ve been started on meds to try and reduce that. Steroids would probably have worked the best, but steroids make you really susceptible to infections and I have enough trouble with that on my own. So I’m really hoping this will help soon, it’s supposed to take about a week before I start noticing anything but maybe it will work more quickly.

I’m also still having what we think is pain from my pancreas (it’s in that area). I have to find a new GI guy here because the ones I’ve seen so far have not been helpful and they don’t understand the mito disease, and once I get in to see him hopefully he’ll be able to figure out what is going on. My sugars have been really low, which is strange because since I’m still on the TPN, I have sugar being poured into my veins 24/7. I’m really praying that all this will be dealt with and fixed very soon. I think I’m doing a bit better strength-wise, and of course not constantly being bacteremic I’m sure helps that, so if the pain can get fixed I think I would start doing much better. Until then though I’m just trying to stay positive and hopeful. The pain is so bad that I end up screaming and rocking back and forth in tears multiple times a day, and it’s wearing me down and causing some discouragement. Just when I think I can’t take any of this anymore God brings something bright and encouraging into my life. And even though it isn’t very often, God uses even the smallest of things to remind me that He’s got my back, that my pain causes Him pain too and that He’s not callous to it, and that ultimately even though I miss a lot of the “normal” things in life, that He has made my life extraordinary so that other people can look at me and see Him.

Yesterday something rather big happened. All these years of struggle and tons of tests everyone has told me that they couldn’t find anything. So many times I was accused of making things up and that there was nothing wrong with me, that all the tests were negative. In Boston they actually listened to me and started investigating without bias, and even though my multiple previous muscle biopsies were deemed normal I’ve always felt inside that conclusion was incorrect. The docs in Boston actually do that test correctly, something you won’t find most other places, so they repeated it. After making a clinical diagnosis in Boston and being warned that sometimes you can have mito with negative muscle biopsies, most of the testing on my muscle biopsy came back yesterday, and it showed several defects. Most significantly it showed complex I and complex III defects in the electron transport chain in my mitochondria. So now we have positive findings, not only a clinical diagnosis. After going through the packet that came from the neuro-genetics chief at MGH I started tearing up, not because I was sad at the prognosis (which is not all that sunny) but because after years and years of prayers not just from me but from so many, that God finally answered one of my requests, for a solid diagnosis, a positive scientific lab study that showed an explanation for the things that were going on in my body. I’m not sure how much this information will change things; as far as Boston is concerned this is what they thought all along and so it was no surprise for them and they will just continue treating me (they’ve already been treating me for this even without the test results) but I’m hoping it will change the way I am treated here in Phoenix. I’m hoping that this will prevent some of the terrible things and stress that I’ve had to go through with a lack of this info, and that there won’t be so many assaults on my character now. Thank you Jesus, for answering this prayer!

I’ll try to update again soon, and let you know if these meds are working. I know so many of you check in everyday and I’m hoping to reward that faithfulness with more frequent updates, but it usually hinges on how I’m feeling. I really do think of you all often and am so appreciative of your notes in the guestbook.

All my love,
Bonnie

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Thursday, April 6, 2006 2:14 AM CDT

~New Photos~

Well, new news to report. In addition to the problems shown on the CT my urine cultured out positive for Klebsiella (a yucky bacteria), so now I have a quite severe UTI. So back onto IV antibiotics I go, and this morning I woke up feeling worse all over in addition to the belly pain (feels like times right before I’ve gone septic) and I have a small temp so we are all hoping and praying that this isn’t going to spread. It would also be nice if once the UTI gets cleared up that that would take care of most of my symptoms, but its hard to tell which problem came first (the infection or the intestinal problems) and how much each thing is contributing.

With all this still going on I’ve been getting pretty discouraged. I know that God has this all completely under control, and that He is using this for His glory and to further His kingdom. It’s been hard though; I haven’t seen my bedroom, been to church (or any other buildings except hospitals for that matter), worn normal clothes (or make up or done my hair), or anything else that is considered basic to life. I know God is stretching me in ways that, while unpleasant, are going to be useful to Him. And for that, and whatever else He wants to do, I am willing. It’s such a tough road, and though a bunch of the time lately I feel like I’m losing myself, God hasn’t lost me, and He never will.

I really do want to express my gratitude for the notes in the guestbook and all your prayers. I know I say this all the time but they mean so much to me and they really make a difference. I think of you all often and hope that this week will be great.

All my love,
Bonnie

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Wednesday, March 29, 2006 1:10 AM CST

Just wanted to quick let everyone know that I'm having some big problems right now. I started having increased belly pain last week and ended up going to the hospital and having a CT scan yesterday, which showed that my small intestinal wall is thickened and that there is inflammation around that and also where they sewed the intestine to my rectum. There is also free fluid. Not sure what they will do; it sounds like I'll either have another CT with enema contrast to see if there is leaking around the sutures or anything else like that, or possibly a scope to see what is wrong. I am sad and very frustrated that this is happening, I was so hoping to just get better and this is setting me back in so many different areas. Also, the pain is very bad, I can't really do anything during the day because I'm just trying to cope with the pain, it's also caused me to stop eating. So, please be praying that this will be figured out and fixed, I know you already are and that does give me comfort. My love to you all, and I'll try to keep you posted.

Bonnie

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Thursday, March 16, 2006 0:15 AM CST

Well, this last month has been excruciatingly hard, which is what I was most concerned about before surgery. I wasn’t afraid of the surgery itself, I’m unconscious for that part, but I knew how hard the recovery would be, and that is the part I didn’t want to go through. I’m still going through it, and it will take months more to complete, but we are so hoping that this will minimize the number of infections I get, or at least break the cycle of chronic sepsis that has plagued me this past year. The antibiotics were stopped this week, but I have a few more days before they are completely out of my system. We should know fairly soon (within the next couple of weeks) if there is any major infection that is going to cause more sepsis, but it will take longer if there is a sub-acute infection smoldering somewhere in my body, especially a fungal or yeast bug, they take forever to show up and culture out, but are very nasty and take even longer to get rid of.

Dr. R has been great through everything though, and has really become personally involved in my care and taken a very hands on approach, which surprised me somewhat with all of the kids he has to take care of, but for which I am extremely thankful for. He will be leaving the country this weekend for vacation, and doesn’t trust anyone else to take care of me while I’m here (it’s sweet and feels good to have a protective doctor taking care of me) so this means that I get to finish my recovery at home! If he weren’t leaving I would definitely be staying longer, so this is the first time I think I’ve ever benefited from having a doctor go on vacation. This will be exactly like when I left the hospital in Phoenix at Thanksgiving, everything will be exactly the way it is here so I’ll be inpatient in an outpatient setting. The bottom floor of out house is still set up as a mini hospital and in addition to the visiting nurses I have plenty of nurses in the family to take care of me. Plus, since I’ve been on precautions due to the VRE I haven’t been able to have any dog therapy and have gone through terrible withdrawal (I think it has actually delayed my healing – JK :-) but when I get home I will have my puppy with me all the time. I know some people may think it’s silly, but I really do love my little Sammy and he does make me smile no matter how I feel. The plan for now is to leave Friday around noon to be flown home via AirEvac.

There are so many issues that are still being dealt with, and will need to continue so. Dr. R has made himself available for us to call him even while he is on vacation if we need anything, and long term he will be closely involved with my care. It does not look like we will be able to see Dr. K while we are here. Since he is at a different hospital he can’t come over here, and I am not well enough to go to him so we’ll have a conference call with him before we leave and then make an appointment to see him later this summer when we have follow-ups with all the docs out here.

I really appreciate all of your prayers, especially regarding my pain. I am still having quite a bit but I finally was able to convince the pain management team that their plan wasn’t working and tell them what usually works best for me. Unfortunately I ended up with a doc who would tell me that he didn’t expect me to get any relief from the pain medicine and that he doesn’t use pain medication to help people feel better. Hello? What else are you going to use pain medicine for?!?! Very strange. While I’m still dealing with quite a bit of pain once we got the timing switched around a little I’m not in quite the non-stop agony I was before. And once I get home that will be easier to adjust and wean as well.

Words cannot express how much I love all of you and how grateful I am for you accompanying me on this journey; even if I don’t know you I still am grateful for the prayers and love you have shown. Please pray for our trip home, that we will be safe and that there won’t be too much painful turbulence.

All my love,
Bonnie

And lo, I am with you always, even to the end of the age.
Matthew 28:20

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Saturday, March 4, 2006 6:01 PM CST

We are so grateful for everyone's prayers and encouraging messages in the guestbook. Thank you also for the cards! I attached them to a ribbon and hung them on the wall opposite from her bed. Bonnie is battling fevers, chlls, shaking, and feeling awful. Her white blood count has continued to go up despite her continued IV antibiotics. Please pray that the docs figure out what the source of the infection is, and that they will cure it soon. The concern is that it is a line infection from her port-a-cath, or a UTI, a lung infection, absseses in her abdomen, or the endocarditis. There is a "hazyness" on her upper right lobe of her lung (on the xray) - so there is a little concern that the infection is coming from there. Also pray that she "skips" the shakes and rigors that she often gets with these infections.

She was moved back to her old room last night (yay!), so she is back with the medical folks (another yay!).

More later.....

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Friday, March 3, 2006 11:03 AM CST

Hi all......thank you for continuing to remember Bonnie in your prayers. She has her up and down days, and today started as a down day with a fever. She feels like something is wrong, and she is feeling worse than she did yesterday. We are still waiting for a bed on that medical floor (I'm thinking if I unpack and put her stuff back up on the walls - then we'll get the call to move). Most of her medical teams changed (surgical, pain management, hematology, medical, etc.) so she is seeing lots of new docs. She is eating and drinking small amounts, and they have started the first reduction in her TPN. She still sleeps between 18 - 22 hours a day, and has been having those sweats that she's had before.

Not much else is new.......just the slow process of healing :).

More later,
Lyn

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Saturday, February 25, 2006 0150 AM CST

UPDATE from Bonnie's Dad:
The recovery road continues - slowly and painfully. Bonnie's primary attending (Dr R)was expecting a turbulant and prolonged recovery and he has been proven correct.

Bonnie had to go down to interventional radiology this morning where they replaced her abdominal drain - the previous one wasn't working as well as they hoped. She continues to have about a soda can's worth of fluid, that might be infected, in her abdoman. This is believed to be causing at least some of her ongoing significant pain. The procedure really wiped her out and was painful.

Bonnie continues to be on TPN as she starts to slowly increase her oral intake. After her blood transfusions the other day her blood counts have been pretty good. Bonnie is out of bed a couple of times a day to use the camode which really kills, but she's fighting her way through it. It's a rough road and we pray she doesn't have any more complications!

Being on a surgical floor and under the surgical team has created some difficulties. Bonnie is a medical patient (who had mito) who has had a surgical procedure. Many of the surgical folks seem to have left the medical part out of their thinking and expect her to recover just like any normal surgical patient (which is totally unrealistic and leads to many expectation problems and the attitudes that accompany them). Also the communication between the surgical MDs and Bonnie hasn't been good - they tend to forget to tell her (let alone discuss with her) about procedures and therapies. When reading this to Bonnie, she commented that I am understating the problems but she'll fill in more accurate details later.

In the middle of all this Bonnie also developed a wopper of a urinary tract infection which is being treated - but continues to be one more thing to fight.

Sean and I flew in this morning (on the red eye) and will be here Friday through Sunday (Sean till Monday). Bonnie is currently scheduled to remain on the surgical floor until Monday and then (we hope) she will be transfered back up to Phillips 21 where she was before the surgery. There she will continue with the surgical recovery, medical treatment, and to see what the infections (abdoman & heart) are going to do over the next several weeks.


Thank you for your continued thoughts, prayers, cards, and guest book entries - they all help a great deal!
(Bonnie's Dad)

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Thursday, February 23, 2006

Thanks to everyone for your prayers and support. Bonnie will help me update soon. For now, she is still on the surgical floor because she still has pockets of fluid in her abdomen. She also still has a drain from the largest of these pockets. She is slowly advancing, still has a lot of pain, and is very weak. She is starting to sip small amounts of fluid (parts of popsicles mostly) and is looking to move back to a medical floor (hopefully the one she was on before surgery). Once the surgeons and the interventional radiologists have determinbed that the fluid pockets are no longer an issue (and she gets her drain out), then she will be moved off this floor.

More later.......

Lyn (Mummy)

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Friday, February 17, 2006 9:18 AM CST

Bonnie has been moved to another room on the same floor (726), and is having trouble with fevers and increased pain. She will be having a CT scan today to see if there is anything surgical causing the fevers. She had cultures drawn last night and this morning, and will have more drawn this afternoon. Her lungs look good (via xray), so it's not a pneumonia :). Please pray that she gets relief from the pain, and that her body will gain some strength. She is doing worse than she was doing yesterday, and she mostly moans and grimaces with the constant pain.

More later...........Lyn

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Monday, February 13, 2006 9:19 PM CST

Bonnie has moved out of the SICU up to the 7th floor of Ellison. She had a really rough time of travel and transfer because of all the jostling and resulting pain. She had a horrendous evening, and we had to call in the covering surgical folks to take a look at her. After the residents looked at her....... they thought she might need to have her belly evaluated for post-surgical complications. The doctor on call came in and noticed that her NG tube (the tube that keeps her stomach empty until her small intestines start to work) wasn't working. He fixed it (it hadn't been working since she had transferred up), and 100 ml of stuff came right out.

And now.....a word from one of Bonnie's friends (who flew out to visit her):
"Bonnie is looking much better since her stomach starting emptying. She still is in a lot of pain, but it seems to be better. Hopefully, she will get some rest tonight and continue healing from her surgery."

Other quick updates.....her white blood count is still high, and she has an elevated temperature.

Dave left for Az today (I think he's still flying in as I write this).

Her new phone # 617-724-4795

More later.....

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Sunday, February 12, 2006 12:25 AM CST

From Bonnie via her dad:

The last two days have been very, very rough. She is on her second day post op and will remain in the surgical ICU until tomorrow. Yesterday was about getting the breathing tube out and then surviving the pain of "having her guts ripped out"! Very extensive surgery along with several biopsys - including a right leg muscle bx for mito evaluation. During surgery the surgeons looked for, and found, some endomeosis that was also biopsied.

Today Bonnie continues to have an tube into her stomach (NG tube), a foley catheter, oxygen, her dual port, and an arterial line. Over night she started bleeding from her kidneys or some other associated structures and her blood counts dropped - which was of significant concern for other potential internal bleeding. She was transfused with two units and is receiving one more right now - may need more depending on what her counts continue to do. Also her blood gasses have been off a little and she has a fever.

Bonnie removed her own dressings this morning (with permission) to see her abdoman without an ostomy for the first time in 3 years. Hopefully she will be going to a regular surgical floor tomorrow to continue the healing journey. Hopefully, the fever, blood counts, and blood gasses with resolve and improve. We are praying for these thing to not become specific complications but transient results of the trauma of surgery.

On Thursday night (night before surgery) Bonnie received the first real surprise of her life when two of her favorite people from Arizona showed up in Boston in her hosptial room! She was totally shocked and they have continued to remain thru the weekend (in spite of the Boston blizzard!)has been a blessing to her and her parents!

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Friday, February 10, 2006 0:07 AM CST

Hi Folks....It has been a busy couple of days with last minute tests and many doctors.
Today, Bonnie had an ultrasound and a special test to check her adrenal sufficiency.
Her endocrinologist found low cortisol levels, and has decided to treat her with a
drug to help her body cope with the stress of surgery.
She will be taken into the OR at 8am EST and they are estimating
that it will be 4 - 6 hours before they are done operating.
She will go up to the SICU (surgical intensive care unit) because
they will most likely keep her on the respirator for 12 - 24 hours
after surgery. We will keep you updated, there is no estimate of
when she will move from the SICU to a surgical floor.

Her favorite people came for a surprise visit (from Phoenix).......
.. and boy was she surprised!!!!! It was a perfect way to occupy her
mind this evening.

Sorry this is so disjointed...
....I am exhausted, and there
is quite a bit ahead still...
...so I am going to get ready for bed.

More later,
Bonnie's Mummy (Lyn)

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Saturday, February 4, 2006 11:42 PM CST

Very strange, it’s not yet 5:30pm as I write and there is already a pitch-black sky out my window. It has seemed like such a long day, but it really hasn’t been. I’ve been extremely fatigued and feeling very run down for the past few days. Most of it has to do with my red blood cell counts being very low right now, and we keep asking the team to address the anemia but they just keep saying to wait until the next labs come in (I know they’re hoping the counts will improve, but I go through this over and over and my hemoglobin and hematocrit will just continue to drift lower and lower until it’s treated). They are not excited about the prospect of restarting the Epogen, because that can cause clots and I’m already having clotting issues despite receiving anticoagulation therapy, so it looks like they may have to transfuse, but that has its own set of risks as well. Dad did donate a couple units for me here, because we know for sure that I’ll need a bunch for surgery and he has the same blood type as me. Along with being so run down I’ve also been getting pretty bad chest pain, so I hope they get my numbers up soon.

Earlier this week they stopped my coumadin and started Fragmin, a low molecular weight heparin that is injected daily (it’s like Lovenox). I was sort of hoping to just get heparin infused throughout the day because I don’t like the injections and my arms are already totally bruised, but the low molecular weight heparin my docs say is easier to predict and dose. Yeah, it’s easier for them maybe, but harder for me to constantly get shots. :-)

On Wednesday the team meeting that was supposed to occur did not end up happening. Too many of the attendings got stuck in clinic (most importantly Dr. R), but instead the surgery team decided to hold a meeting just to discuss my case. This included both the adult and pediatric services, and included all surgeons from each service. So literally all of the surgeons here had a special meeting to go over my case. As I wrote to you before I was concerned as to what the outcome of things would be. I’m used to surgeons just taking the medical teams advice and going ahead within a couple of days. Here, it is so much different. The surgeons really make sure on their own that everything is in place and that all the i’s are dotted and t’s crossed and that their criteria is met because they really want to make sure that their intervention will not just do no harm, but will actually benefit the patient. Dr. R attended the meeting and after discussion the decision was made to do the surgery. So as of right now I have OR time for Friday, but they’re going to see if they can possible do it sooner, like if there is a cancellation or something. This was such a relief; I’ve had so many bad experiences in the past that it made me somewhat nervous. So far things have been going so well and I wanted that to continue. I’m not excited about having major surgery, this is a huge, risky, and extremely painful operation, but I really have no chance of getting better without it, or even of continuing to live. I really appreciate all of your prayers, my parents and I could not have stayed “with it” without them and it is so good to have God answer those prayers for peace and hope. No more pits in the stomach, just comfort in resting in God’s hands.

My dad left for home really early Thursday morning, before the surgeons came in to give us the news. There were some key meetings he needed to be at, but he will be coming back here before surgery. No one said anything about doing the anal-rectal manometry but I knew that was a concern, to make sure that was still working and know where to sew things together. Well Thursday during lunch my nurse comes in very surprised and said they were here to do it. No one had even notified her that I was going to have it and so none of us were prepared. Dr. R was so kind and came over on his lunch hour to do the study. It was very uncomfortable but not as bad as the other two, especially since this one was only about an hour long. The nurses that do the studies have been really great in that they have let me go through the tests in my room. There is a special room dedicated to these procedures down stairs but for each of the three manometry studies that I have had done they have brought all the equipment and computers up to my room and done the studies here, which helped me be a bit more comfortable, especially with the manometries that lasted about six hours. The study showed that I have increased pressures, most likely due to my chronic slow motility, but that it worked well enough to be reattached. We are still waiting to go over in detail all that the surgery entails, but things definitely have a direction now, and although the road ahead will be rough, we do have some hope.

The consult that I’ve been waiting about three weeks for finally showed up. Dr. Y from reproductive endocrinology came and was very nice. She had seen some of my ultrasounds showing the ovarian cysts and free fluid and told me that I probably had polycystic ovarian disease, something that 10 percent of normal, healthy females get, but there is a much higher incidence in mito girls. I will be having another ultrasound on probably Tuesday to try and make a confirmatory diagnosis, but so far we have a definite clinical diagnosis and she has some ideas for treatment that will be discussed more after surgery and once I’m starting to feel better.

Today I found out that one of my friends with mito died this last week. She and I met at Mayo in Rochester; our rooms were next to each other at St. Marys hospital. She was such a kind person; she even shared her horehound candy with me to help with the irritation from my NG tube (the only thing that helped). We shared many of the same struggles during that admission, and even after we went home we kept up over email. She really introduced me to the mito world, and sent me those first journal articles about the disease. I wouldn’t have the network of other mito patients that have encouraged and shared information with me if she hadn’t introduced me to everyone. Most of all, she loved Jesus, and it was great to not only meet the only other person I knew at that time with my disease but also to meet another sister in Christ. I envy that she is sitting with our Father right now, and am glad that she is finally free from the pain and suffering she endured. Every time I find out someone with mito dies it makes me remember the severity of this disease, but I also remember that it is not up to this disease to dictate when I have finished my work here, it is only the will of the One who commissions that work. I have such freedom to live knowing that nothing can snatch me out of my Father’s hands, and that it is only He who has the power to both will and fulfill that will of when I will join Him for all eternity. I was the last person to sign her guestbook before she died; I wished her a year of answers and better solutions, and in general a happy new year – I guess this is the best solution of all for her, although very sad for us still here.

This has been a very up and down week, sad and anxious times (my friend dying, waiting for direction here, and finding out that one of my best friends is moving to Chicago), and cheerful and happy times as well, like when I talked with my very good friend/nurse Geri, who always brightens my day with encouragement and the funniest stories. I also particularly enjoyed the gerber daises that were sent from my college pastor on behalf of the ministry this week. I can really feel the support of that entire ministry backing me up here, and I really appreciate all those prayers. We also got a visit from my mom’s aunt and uncle today; they brought me Cheddar Ritz Bitz, which I can and do eat virtually any time of the day but we haven’t been able to find them here, so they brought a stock in from their local grocery (for which I am so grateful). The other thing I’ve been missing are the buttered popcorn flavor Jelly Belly’s (since I can’t eat popcorn because of my ostomy it’s a good substitute so I can at least enjoy the taste), but dad is going to bring some when he gets back from Phoenix.

I want to send out happy birthday wishes to my dear friend Cheri! She has stayed by my side through everything and always finds a way to cheer me up when I’m having a tough time. God has done great things through you Cheri, and I pray that this year He continues to bless His children through you.

I’m sorry this is so long, there has been a lot going on as you can see. I really do appreciate that you take the time to check in and see how I am though, and your guestbook entries never cease to encourage and support me, if even just to know that you were thinking about me today. I miss all of you so much, and can’t wait until a time when I’ll be up and around and back on my feet.

My love to you all,
Bonnie

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.
2 Corinthians 4:7-9

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Thursday, February 3, 2006 8:05 AM CST

MORE UPDATE Feb. 3, 2006

Just a quick addition to the below......The care conference was canceled, but the surgeons (all of the adult surgeons as well as some of the pediatric surgeons) met Wed. night and decided that Bonnie does need a colectomy. We are waiting for the operating report from her open heart surgery in July, and a copy of her echo cardiograms from the fall so that the cardiologist can determine if the thickening on her valve is something new or old. Once he clears her for surgery, they will schedule Bonnie (hopefully early next week).
I'll let Bonnie fill you in on the details when she is up to it (she had another test yesterday - but thankfully it wasn't as bad as the other two manometry tests). Dave left early yesterday morning to catch up on some work stuff at home, and plans to fly back for the surgery (it'll be a season of long commutes for him).
Thank you for praying! Bonnie is looking forward to having a life outside of the hospital setting :). We are hoping that this surgery will take care of the source of these continual blood infections.
In Him,
Lyn (Bonnie's Mummy)




UPDATE: Feb. 1, 2006

Greetings All! The 2 pm team meeting was canceled due to a number of the MDs not being able to show up. The current most important issue is related to the surgery on the colon. Bonnie's primary GI MD [Dr R] (the one with all the experience in her situation) strongly feels that the surgery is the next step. The surgeons don't know her disease well and are being very cautious about removing her colon, mostly cause they don't know mito disease as well. There is a hospital wide surgical meeting today at 5 pm where Bonnie's case is being presented. Please pray for this meeting - that they will recognise that Bonnie doesn't fall into a normal surgical box and that they will listen and hear the wisdom of those who know mito and have seen this situation.

More Update Soon!
Dave Codier (Dad)


Well, frustration is starting to set in. It is taking so long to get things going here, we’ve been waiting over two and a half weeks just for one of the consults to show up. There are other consults we are waiting on too, and it seems like the more people that get involved the more rabbit trails we go down. The first week we were here everyone was in agreement that I definitely needed a colectomy and that I needed it fairly quickly, but we’ve been here waiting for two and a half weeks now and we don’t even have a surgery date. The new peds GI attending came in this week, a Dr. W who doesn’t really specialize in mito patients, and he suggested today that maybe my colon wasn’t the problem. The colonic manometry that I just had showed a completely flat and very diseased colon, so I’m a bit concerned that they are getting off point in dealing with that in considering other causes.

Infectious disease said that they wanted me to have a TEE because my echo showed a thickening of my tricuspid valve (could be from the open heart surgery last July or maybe new vegetations). That department made the recommendation and then had to wait for the lead team (peds GI) to order it for them (only one team can order things for me, each specialty can’t just order their own stuff). Just to give you an idea of how complex this process is, which is one reason it is so slow is that once ID said it wanted a TEE ordered then peds GI decided to consult with cardiology to see if they agreed. Cardiology agreed but then another doc who hasn’t even ever seen me before but who works in the echo lab decided to challenge the TEE order and is now saying that they can see better with the normal echo. This seems strange to us because every echo I had last year they always had to get a TEE to get a better look at my heart, and they always saw things on the TEE that they didn’t on normal echo. So now, that decision has to be run by the original cardiologist that ok’d it, and on and on until somehow someone decides whether or not to do the test. The same thing seems to be happening with the surgery, and it is getting so frustrating. We already know that I will be here at least a month or more probably after surgery, so we’ll have plenty of time to see the rest of the consults during that time, but by delaying surgery it is just extending the time we have to be here. Some things have to be done before surgery, and I get that, but it is making me nervous that this is taking so long.

I always get a pit in my stomach before the docs come in wondering what they will say each day. Dr. R also seems to be a bit wishy washy about stuff sometimes too, so we haven’t really been able to get a good sense of how he deals with stuff so that we can kind of predict how he responds to different peoples opinions and such. Please be praying for all of us, things have been going so well so far but I keep getting this feeling like things are going to come crashing down at some point. I don’t know is that is just experience talking or what, but I really feel like this is the last big chance to get some good help so if it doesn’t happen here I doubt it ever will. Dr. R was supposed to meet with the surgery team today to go over stuff and basically make his case to them. I’m used to surgeons just doing what the medicine docs report needs to be done, but here you really have to convince them that surgery is needed and won’t do more harm than good. With me that is a tricky case to make, since I usually get every complication there is, and I know it’s the complexity of my disease and specifically my case that is causing so much pause and consideration for every aspect of my health. It’s just so hard waiting and not knowing what they will end up deciding. We thought we knew, but since we don’t know these docs we don’t know if they usually stay consistent or if they are easily swayed. The other thing is that it is such a major surgery, one of the biggest you can have, and I know they are concerned with my present state of bacteremia and overall health. I can understand that, but chances are and Dr. R has said before that those issues are likely not to be resolved until my diseased colon comes out so that the bacteria can't cross contaminate. Please be praying so hard that Dr. R continues with what he has said before and remains convicted that surgery is warranted to get me better, and that he is able to convince both the surgeons and the rest of the medical team of this case. Please also pray that whatever tests that are absolutely essential to have done before surgery can get ordered and performed quickly, and that me and my family here continue to trust God and rest in His peace. It is so hard to just sit here with people dragging their feet and to have different people say different things, it makes us quite frustrated and concerned/confused/wondering/anxious/etc. There will hopefully be a care conference tomorrow with as many departments there as possible, so it will be interesting to see what they come up with and decide. I am scared to death that they are going to make me repeat the manometry studies for some reason, that is probably one of my biggest fears, or that they are going to decide not to do anything with my colon. Actually, there are lots of fears (probably some irrational and some real), so please be praying that God will calm those and that there will be a good outcome from tomorrows meeting. Please pray that they will stay on point and not get side tracked.

I did have a fluoscopy study of my lungs today to see how the phrenic nerve damage is. It was mostly paralyzed before, showing only a little movement, and they couldn’t compare it to the other study so they don’t know for sure but the radiologist thought that maybe it looked slightly better, so now its left hemipheresis instead of hemiparalysis.

I know you have all already been so amazing about praying for me, which is truly an amazing gift that I am not worthy or receiving, yet am so thankful that I have. But I am asking again, for you to bring these requests before our Father on my behalf. That is the only thing that will help me get through this. I love you all and hope that you will have a terrific week.

Bonnie

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Saturday, January 28, 2006 10:42 PM CST

This week has been a week of ups and downs. Mostly we have just been waiting; it takes a really long time here for consults to show up and we are still waiting for some specialties to come by and figure out their part of my care. The intern said she ordered about 12 different specialties to come in and consult, and some of the ones that have come by have decided to request that I see their adult counterpart as well, so I may end up with double the consults and have both an adult and pediatric team in each specialty. The peds GI attendings here rotate every week; the one I had last week (Dr. B) was terrific but unfortunately the one I had this week (Dr. I) was terrible, I’m not quite sure how she can work with kids. Even the rest of the team (fellow, resident, and student) respond differently with her than the others. One night she even made me cry in front of the team while she was interviewing me (which I really did not want to do) because of her approach and demeanor. It seemed more like an interrogation than an interview and for some reason even after explaining things she just didn’t make the connections. I’m hoping next weeks will be better.

Initially the thought was that I would have Dr. D from peds surgery do the colectomy, most of the other docs thought that he would be the best. Unfortunately after coming by to meet with me he has requested that adult surgery be the lead team for a bunch of different reasons, one of the biggest being that I would need to go to an adult ICU after surgery if I needed intensive care, and from what they’ve been telling us it sounds like they are pretty much planning on me needing it, so unless I do really terrific and sail through surgery it sounds like I’ll be going to the SICU (surgical intensive care unit) after surgery. We are still waiting to see the actual surgeon who will be doing the surgery, but have met a bunch of residents from that service.

Yesterday (Friday) I had the other manometry test done. Originally I was supposed to have the antroduodenal and anal-rectal manometry done next, but Dr. R. decided to not do those and instead go up through my stoma and thread the catheter into my small intestine that way. While I was in the pre-op area I asked Dr. R for about the third time how long the manometry portion would take and he consistently answered about three hours and that it would be pretty short. The last thing I thought before going to sleep was how grateful I was that this test would not be as difficult as the colonic manometry and how much easier the day would be. When I woke up with the catheters placed I asked to use the restroom in between the procedure portions like I had been able to with the other manometry because I knew the next part would take a while. That request was denied (the tech told me that the catheters would fall out of place) and I was told the test had already begun. This was at about ten in the morning, and instead of finishing in three hours the tech informed me that this test would run until five thirty that evening! I had a very hard time swallowing that bit of information. My belly was already hurting a lot, I don’t know if my bowel is just really sensitive because of all the trauma it has been through or what, but these manometry tests are by far the worst kinds of tests I’ve ever had, and they didn’t want me taking pain medication either. The medication challenge caused a very bad reaction, it gave me the worst nausea I’ve ever had and they wouldn’t give me Zofran because they thought it would affect the test. I wound up retching and vomiting. The med is supposed to jump start the peristalsis, but I guess with the vomiting I must have had reverse peristalsis. It also caused me to start sweating profusely, all my muscles started cramping, and it gave me that horrible indescribable feeling whenever I get a med that I shouldn’t. Something more to add to the allergy list I guess. By about three or four I really started having trouble. I could only eat two bites of the food challenge, and not only was I in horrible pain but my bladder was so full (I hadn’t been allowed to go since 7:30am) that I thought it would burst any second (plus I had taken diuretics and am being pumped with 100cc of fluid every hour via IVs), the point where it’s so full it’s actually excruciatingly painful. All this was not boding well when they told me I still had two hours to go. Around four I told my parents that I couldn’t hang on anymore, that I was really sorry but if something didn’t happen to alleviate even one of my symptoms that I would have to pull the catheters myself, or just get up to go, or something, I was that desperate. The nurse that I was previously having trouble with actually did a great job advocating for me that day and called Dr. R at that point to ask him what to do. He gave the ok for me to use the commode, and after getting rid of 1300 ml of fluid (I don’t think bladders are supposed to hold that much), even though I was still in a huge amount of pain and very nauseated, I was able to finish the test. I hope the test turns out okay, we’re not sure if the catheters ended up moving internally or not, plus my crying did affect some of the sensors (even though I was feeling really bad and could have cried for hours and hours I did manage to control it when I found out it was affecting the reading), and all the other complications that affected it, hopefully it will be close to accurate (Dr. R has only done about 25 test this way), we’re praying that God will show what is really going on in there despite all the problems. I really hope that is the end of manometry studies for a very long time, they provide for very long and horrific days, although I am grateful that they do sedate you here while they are placing the catheters internally.

It is going to take a while to get those test results back; apparently they take a while to read. I was re-cultured for VRE, and the docs jumped the gun a bit and took me off precautions on Friday. Today two of the cultures came back positive for VRE, so now I’m back to people coming in with yellow gowns. Unfortunately the only day I was off precautions was the procedure day, so hopefully they were very careful doing everything because even though they weren’t taking the appropriate measures to deal with a VRE patient I was still infected with it. I did get a dog therapy visit yesterday. They have about ten dogs here that visit Tuesdays and Thursdays. I got to see a cute little yorkie named Maggie who started the program here. After talking with the owner I was surprised to find out that they don’t require obedience testing and therapy dog memberships here (I never would have figured that a Harvard institution has looser requirements than Sammy and I have). I enjoyed the visit but it made me miss Sammy more. Uncle Ernie has a dog that looks a lot like Sammy, so I’m hoping to see her at some point (whether they sneak her in here or after I’m discharged). I also met the director of volunteer services here. My boss Martha (the director of volunteer services at Banner Desert Medical Center) called the director here to arrange the dog therapy. I am so fortunate to have such a wonderful director who still thinks of me and encourages me as a member of her team even though I have been on leave for quite awhile. From what I can tell they have a great volunteer program here and their gift shop (which they call a general store) is amazing. They were closed for inventory today so Mummy and I are hoping for sales tomorrow. :-)

We did have a wonderful time this week meeting with my great-uncle Ernie. He lives just a five minute walk up the road with his family and has stopped in twice to see me this week. He is a wonderful resource as he has worked extensively here at MGH in the past and has given us comfort in his warm and caring presence. We have also twice seen my great-uncle Gerry and great-aunt Pat. It was wonderful to see some familiar faces and we were so appreciative of their visits (they live about an hour outside Boston) as well as the treats. :-)

Back in Phoenix some of the nurses at Good Sam were so sweet and would bring in DVD’s for me to watch. I was so honored that they trusted me with their own belongings. Well now I’ve had the same experience with doctors. One of the peds GI residents was wearing a Red Sox tie last week and I commented on how I’m a big fan too and ended up chatting a bit about it with him. The next day he ended up bringing in his cousin’s copy of Fever Pitch (that movie with Jimmy Fallon who plays the most dedicated and obsessed Red Sox fan ever), for me to borrow over the weekend. My family and I thought of our cousin Carl when we watched, because he is a huge Red Sox fan. He took me to my first professional baseball game ever; it was at Fenway Park with the Sox playing and was the coolest thing, something I’ll always remember. He didn’t know it at the time, but I wanted this really cool Red Sox cap, the one that’s all pink with the capital B, and he ended up getting it for me when he was at a game with my Buppa last year. I was soooo excited when I got it. Thanks Carl, I love it!!!! The funny thing is that Dr. R takes full credit for the Sox winning the pennant, he says that wherever he lives the baseball team starts doing really well when he moves there.

Well, not much else is going on. I had a great time visiting with Sean over the weekend, and was sad that he had to leave. My parents have been such troopers through all of this; I know it’s really hard on them to have been going through this so long and to have to juggle work in with this trip. I really appreciate both of their sacrifices and how hard it is to watch me go through days like yesterday. I couldn’t do it without my family, or all the other people that have supported and encouraged me. I’m not sure what is ahead, but hopefully a quiet next few days as we finish getting the consults in and then setting a surgery date, it could be within the next week depending on how soon people come and whether they want more testing or not. It’s weird to think of losing the bag as it has been such a help, but also kind of exciting thinking about getting new swimsuits and dresses that don’t have to accommodate and hide the bag. We also have to consider whether or not I will be getting a J-tube or not as well; this type of abdominal surgery is such a big thing, and especially with all the complications I had with the recovery the last time, winding up in ICU on a vent, etc, just really makes me appreciate the heaviness of what is coming up. Knowing that though helps me gear up for it, to get mentally prepared to deal with and make it through, knowing especially that God WILL get me through it; that there will be hard times when it will be hard to trust God, but my faith is a gift from Him, so it is assured.

I hope you all are doing so well, know that I miss you all so much and think of you always. Have a terrific weekend and you have my love.

Through many dangers, toils, and snares I have already come
‘Tis grace that brought me safe thus far and grace will lead me home

Bonnie

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Saturday, January 21, 2006 0:32 AM CST

Well folks, just a quick update. I am going to have the colectomy here. My surgeon in Phoenix is totally willing and very capable of doing the surgery there, but the support for the recovery is the main issue, and since I’m having some issues with my internist right now anyway everyone has decided that I would receive better post-op care here. The insurance has also said that they will cover whatever I need to have done, so that is a major praise and could have only worked out with God’s direct intervention. This is a major commitment now though, since we will end up being here much longer than just a couple of weeks (inpatient stay after the surgery alone will likely be over a month). The pedi GI team has set up consults with both adult and pedi surgery. Dr. R and Dr. B from pedi GI said that the adult surgery team has probably done more colectomy surgeries but usually for Crohn’s, colitis, etc. whereas pedi surgery has probably done a lower number of colectomy surgeries but that they do more because of motility issues. So they are consulting with both, we’ll meet with them, the surgery teams will meet with each other, and somehow we’ll decide on which team to use. Dr. R said he felt like we’d end up with the pedi team, but he still wants us to meet both.

I will be having a frozen muscle biopsy during surgery, and the anal-rectal manometry done the beginning of next week. I’ve already had this test done four times, and while it isn’t pleasant hopefully it won’t be as bad as the colonic was. Also, since we’ve decided to stay here for an extended time the whole crew is now joining my case and I’ll be seeing consults from endocrine, cardiology, immunology, ID, hematology, etc. So that should all happen next week and then we’ll see when they have OR time for me. It still really hasn’t registered that I’ll be having another major operation soon, but hopefully it won’t freak me out as much as I think it will. There has just been so much in the last year and I’m just so tired of trying to fight to stay alive. My goal though is to be better in time to be in my friend Kelley’s wedding. The way the timing is working out I should be in good shape by then hopefully, and I won’t have a bag anymore so the dress should fit even better. :-) Don't worry Kelley, I WILL be there.

If you’ve tried to call my room and had trouble that’s probably because someone is usually on the internet (we have to use the phone line to connect here) to help pass the time and keep up on things. If you can’t get through on the room line then you can call my mummy’s cell (email me for the number, I don’t feel great about posting it for the whole world but have no problem passing it out over email) and that way even if we are with a doctor at that point we’ll be able to see that you called and what your number is and give you a call back.

I hope you all are doing great!

Much love,
Bonnie

P.S. Sean arrived safely last night, I'm excited to spend some time with him. Thanks for your prayers!

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Thursday, January 19, 2006 0:35 AM CST

Hi folks,

Well, things are going here. Friday I was switched from being on both the pediatric and adult services to just being on peds. I also had a nuclear gastric emptying scan which showed moderate to significant delay; when the team came in with the results they seemed surprised that I could even eat (even though I long eat very small amounts at a time). Since it was a holiday weekend most of the docs were gone but I was able to settle in a little better and rest up a bit. My final cultures from Phoenix showed Vanco sensitive enterococcus, so the team here switched my anticiotics to Vanco Unfortunately the nurse didn’t tell me that she was hanging them so that I could tell her that I have a reaction when it goes in too fast and I ended up with a pretty severe case of Red Man’s Syndrome. On top of that I thought I was going a little crazy because I felt like I couldn’t breathe as well and that my pain wasn’t being covered as well. Turns out that the nurse has set my PCA pump incorrectly so I was only getting half the usual dose and she had also decided to turn down my oxygen without telling me. No wonder I was having trouble! The team fixed those issues and also decided to up my fluids, slowing increasing the amount every day, and it seems to be helping so far. I seem to be chronically dehydrated and I was so glad that Dr. R addressed that.

Sunday afternoon Dr. S from the neurogenetics/mito department came and spent 3-4 hours with us going over history and problems. At that point she said that she was sure that this was mito and made a clinical diagnosis. She wants me to have a muscle biopsy, so we are in the process of deciding whether to have a frozen one done here or have a fresh one done in either Cleveland or Atlanta (they are the only two places in the country that do fresh muscle biopsies, they are about two months from being able to do that here). The fresh ones usually yield more results, but it seems like they want to see if it will show anything soon. She was so great and talked about the importance of trying to keep ahead of the disease by treating things as soon as they come up instead of waiting until they get out of hand. She basically confirmed everything that we’ve been trying to get the home docs to understand. After spending so much time with me she spent another hour or two just writing up her notes. That visit was a total God given gift because I’ve heard that she stopped accepting adult patients five months ago and that her appointment waiting list is six months long. The team has referred to me as a mito patient from the onset and have also labeled me as one of their “toughie” patients (complexity-wise).

The plan for Tuesday was to do both the antroduodenal manometry and the colonic manometry together. I was extremely apprehensive about this day, for so many reasons, most of all I remembered how painful the colonic manometry was when I was at Mayo and even though Dr. R had assured me that was only because my colon was still connected at the time I was still not sure. I did have the most wonderful anesthesiologist though, the best I have ever worked with. He was definitely another total gift from God. Unfortunately after an hour of placing the upper tube I ended up coughing/vomiting it up and out of place. I think I may have aspirated some saliva during the endoscopy portion of the procedure because I was having trouble swallowing once they sprayed the back of my throat to numb it. The lower sensors were placed, and that too was very difficult. When Dr. R went in for the colonoscopy portion he found my colon to be very friable (extremely fragile) and when he put the air in my colon started bleeding a lot. There were several hardened mucus plugs and he was able to push through a couple of them but couldn’t push through the one blocking my ascending colon. So the sensors could only be placed two-thirds of the way in.

Unfortunately when I woke up from this procedure I was in excruciating pain; it felt like he had completely raked out the inside of my colon (and all my insides for that matter) and my whole abdomen and rectum felt extremely raw. Thankfully the anesthesiologist treated that pain while I was in recovery, but unfortunately I was not able to receive pain medication during the actually manometry study, which lasted about six hours. The last two to three hours were horrific, something I would call one of the worst things I’ve ever had to go through. I got this old song stuck in my head, it felt like God put it there to help me hang on. It’s that one that goes:

Oh Lord God, Thou has made the heavens and the earth by Thy great power
Oh Lord God, Thou has made the heavens and the earth by Thy outstretched arm

Nothing is impossible for Thee
Nothing is impossible for Thee
You’re a great and mighty God,
Great in counsel and mighty in deed
Nothing, nothing, absolutely nothing, nothing is impossible for Thee

It was really frustrating for me to have to go through something that horrible again, but once again God did prove to me that He is there, He will not leave me, and that truly there is nothing impossible for Him to get me through. It’s just a tough pill for me to swallow sometimes that even though God does get you through the hard stuff that doesn’t “save” you from having to go through that suffering again.

Dr. R came in this morning with the results and it showed that my colon was completely flat; there is absolutely no movement whatsoever. It was somewhat of a relief to hear this after so many people told me that I was making it up, that my colon couldn’t possibly have stopped working. The really troubling part is that Dr. R said the study was practically identical to the one I had at Mayo, but after I had that test at Mayo they kept trying to convince us that there was something there. Dr. R recommended a total colectomy, so we are in the process of deciding when and where to do this. He said I will be in the hospital for at least five weeks after surgery, and that they recovery process will be quite long. Mito patients take much longer to recover from surgery; Dr. S said it’s literally like being run over by an 18-wheeler. Your prayers are coveted as we try to make this decision.

I still have to go through the antroduodenal manometry, and also anal-rectal manometry as well. Dr.K will see me at some point this week hopefully, Dr. R talked to him today about me. The doctors work together so amazingly here, even reaching across university and hospital lines to help their patients. I also may be having an endocrine consult coming up too; Dr. S is wondering if I have poly-cystic ovarian disease. The docs are also trying to decide whether to do surgery or the muscle biopsy first. So, we’ll see what happens.

Overall God has truly answered prayers in a huge and amazing way. I have never had so many doctors like these before; they care so much and are very warm. I haven’t had too many great nurses yet, and miss my homegirls up on the 12th floor at Good Sam, but this trip has turned out very well so far and has impacted the rest of my life already. These people understand what is going on with me, and if they can’t put their finger on the exact thing they don’t just give up, they keep fixing the problems as they present.

I asked some of you to pray that God would send His peace to wash all over me and it has, please continue to pray that I will be able to endure the tests and surgeries ahead and that as I go through them I will continue to be an ambassador for Christ. It has and continues to be so hard to be so sick for so long, but God has not let me go. Please also pray for my brother Sean to have a safe flight here tomorrow, he is spending the weekend with me.

My love to you all, and much gratitude for your fervent prayers.
Bonnie

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Thursday, January 12, 2006 7:39 PM CST

It's been a tough few days getting ready for this trip, but we are now here. The Air Evac crew couldn't have been nicer, and they told us that they want to be the team that brings me back. The Leer Jet we flew in was a bit bigger than the last medical plane we flew, and it was much quieter. We only had to stop once for refueling. I ended up having a lot pain because there was a lot of turbulance, and the ambulance ride was extremely bumpy and rattely as well (Boston- fix your potholes!).

Our flight crew took us into the hospital, and we went to Elison 18 (where we were told I would stay) but they said they weren't expecting me. It turns out that I was supposed to go to Phillips House (2112). It is a really nice unit with all private rooms with pull-ou couches (into beds) and sitting chairs. The view is spectacular (the window takes up the whole wall) and looks out to downtown Boston and the Charles River. I've only seen it at night, but I can't wait until tomorrow when I can look out to the beautiful buildings and the Boston skyline. There is a view of the water and if I look down I can see the front of the hospital.

So far, the residents seem very nice (so far both the adult and pediatric residents are) so I'm hoping they will stay that way :). I wasn't expecting to see Dr. R until tomorrow, but he came in and spent some time with us to go over his plans. Tomorrow I will have a gastric emptying study in the morning. Tuesday I will have the antro-duodenal manometry test. He is also considering doing another colonic manometry test - but I am really hoping that I won't have to go through that again and that he will be satisfied with the results from the one that I had in Rochester (Mayo). He also said that Dr. S from the neurogenetics/mito department would like to see me, and will most likely do a muscle biopsy. They will also try some different IV levels for fluids, as he feels that I would have more energy with more fluid (3-4 times what I am getting now).

We'll keep you up to date with new info, and you can always sign the guestbook and/or send an email. I might not be able to email you back, but my mom can read them to me (she is typing out this as I dictate). Thank you for your prayers, I continue to be strengthened by them.

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Thursday, January 12, 2006 2:56 AM CST

I am leaving in about five hours to go to Boston. AirEvac (an air ambulance, fixed wing) is flying my parents and I out of Sky Harbor to Logan International, with a refueling stop somewhere in IL. Just to very briefly get you up to speed - I spiked a fever Sunday night and felt a lot worse, like I had gone septic again. Just like the rest of this entire last year the cultures turned out positive in less than 20 hours showing the same types of bacteria that I've been dealing with. Everyone was planning on having me admitted but the ER had a 10-16 hour wait and the hospital was over capacity. So it was either wait forever and then have to camp out feeling miserable in the ER for three days or go home and feel miserable while petting my dog for the last few precious days with him. Since I could not even stay sitting for an hour I decided to go with the latter. Dr. R in Boston however, decided that I will be admitted directly from the plane, so an ambulance will be there when we land to take us to the hospital. I am feeling so bad, and I hate feeling any sickness right before a major trip.

I've heard wonderful things about these docs but I am very, very nervous about this trip. I had the most deplorable experience with the Mayo Clinic trip and do not want this trip to resemble that one in any way. Please be praying that God would give me His peace and that the doctors would be extremely compassionate and kind. I am really hoping that they will be considerate of everything that I've been through in the last year and especially in how they deal with the pain management. I am still in a lot of pain from the ongoing sepsis and I am praying that I won't have to suffer through this trip.

I also wanted to quick thank some of my family members for making contributions to the United Mitochondrial Disease Foundation.

Peter & Dianne Carberry
Gerry & Pat Condon
Ed & Twink Haddad
Jim & Isa Condon
Carl & Becca Zieminski
Nelson & Jan Maynard

I really appreciate that you care so much about me to do this, and I know many others who will benefit from the research and education made possible by your contribution. Thank you so much.

Please leave notes in the guestbook to let me know you were here. Even a short hello will do wonders for me while I'm in Boston, and my parents will be checking in almost every day to let you know what's going on and to read me the guestbook entries.

I hope you all are well,
Bonnie

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Tuesday, December 20, 2005 2:56 AM CST

I just wanted to let you guys know that it looks like I have a case of aseptic meningitis right now. I had an infusion of IVIG last Tuesday and started with the horrible headaches and related symptoms. I guess the IVIG is a blood product that has to be mixed in with a solution before it is infused and that the different solutions can cause different reactions. My mummy looked into it and found out that about 17 percent of the people who get IVIG get asceptic meningitis as a reaction. I hope we can find a different solution to mix with the IVIG, because I have to have it infused every three weeks and I certainly don't want to go through this that often. I never had this reaction at Good Sam, so I guess Desert uses a different mix. Anyway, I'm still feeling really bad from this, it completely incapacitates me. So I would really covet your prayers during this time.

Much love,
Bonnie

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Monday, December 12, 2005 1:23 AM CST

Well folks, there isn’t too much to update at this point. So far I have been hanging in here at home, overall still feeling the same, and some days are better or worse than others. It seems that the doctors in Boston are pretty good at communicating with each other, because a week after the conference call with the mito specialist in Boston (Dr. K), my primary doc here (Dr. Z), and my dad, the peds GI specialist that Dr. K wants me to see called my dad. This doc, Dr. R, is at Mass General and he thinks that once I’m out there he’ll see me for a day or two outpatient and then admit me and do the consults and tests inpatient. Plus, I’m imagining that I’ll need the added support of being admitted in order to get me better. Dr. R is thinking about having me go out there mid January, which is further away than we wanted, I would much rather figure out what is going on sooner so that I can get better, but it sounds like these docs have long waiting lists, I know Dr. K’s is six months long. But Dr. K and Dr. R have already had conversations about me, and Dr. R said that when I am out there that he’ll squeeze me in to see Dr. K a few times while I’m there.

So we are in the process of trying to get this thing planned. The hold up right now is with Dr. Z, he is supposed to write a letter to Dr. A, who is the medical director of our insurance (a guy who is very familiar with my case), so that he can approve the trip, and since it was his idea to begin with that shouldn’t be a problem, it’s just the letter has to be written anyway to start the process. The other really big thing we have to figure out is how I will get there. I can’t fly commercially because of the germs I’d be exposed to being cooped up flying in a metal tube with so many people for so long. Also, I’m going to have to fly with a bunch of medical equipment as well. I don’t think it will have to be a medical flight (it will depend on my condition at that time) but I’m hoping that I’ll be ambulatory and have enough stamina to travel. The last time I had to be medically flown to an out of state hospital it put us into major debt because our insurance decided not to cover the cost of the flight. I am so lucky to have such an amazing family that is willing to sacrifice so much for me, as well as our church family who has helped us financially. I pray that God will allow me to repay their sacrifices some how. If any of you reading this have any ideas for transportation or know of anyone who would have any ideas, please let me know.

I hope all of you are enjoying the season. Stay safe and have a great week!

Much love,
Bonnie

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Sunday, November 27, 2005 2:55 AM CST

Hello All,

Well, after waiting for something to happen so that I wouldn’t have a pointless post I now have quite a bit to share. My doctors officially exhausted all of their ideas and shared with us that they had nothing more that they could contribute to my current problem. They said that they had tried everything that they could think of but that I extend beyond their expertise. So instead of leaving me be and focusing on getting me ready to go to a different hospital they came up with the idea of doing another antibiotic trial and having it done in ICU this time. This was partly due to the fact that every time they have taken me off antibiotics so far I get a worse sepsis each time, but also partly due to some doctors feeling they need to “watch” me closely to be assured that I am not infecting myself or someone else contaminating me. The insinuation that I could be infecting myself makes me feel very insulted and somewhat sick to my stomach that such a suggestion would be made about me, but this sometimes happens to mito patients since the disease is so complex and frustrating. This antibiotic trial was unacceptable to me because it would take me so long to recover from the resulting sepsis and that would delay our attempts to go to a different facility where the doctors are more qualified in mito diseases and would hopefully get me better. Also, I didn’t understand why the docs kept coming up with stuff to do to me when they had already said they had nothing more productive to contribute. After explaining this to the docs and begging them to let me come home for a short break before heading out to a different center, and going back and forth with them about it for several days, they finally agreed to let me have a short break! Everything had to be set up at home exactly how it was at the hospital so that I had the best chance of staying somewhat stable. It’s a fine line; as it was in the hospital if my temp went up even a degree or two I’d be transferred STAT to ICU, so the situation is pretty fragile. It took over a week and a half to get all the equipment and medication set up but late Wednesday I came home!!!! The first night I slept until 11am the next day, and even though I am hooked up to three IV pumps, oxygen equipment, and more not one alarm went off during the night. Things are tougher than I thought they would be here, usually when I leave the hospital it’s a sign of recovery, so even though I knew that ahead of time it's still disappointing to feel as bad as I do. The transition and holiday have taken a lot out of me, so the last few days have been pretty rough, but I hope things will stabilize a bit as I get used to all the new surroundings.

I did have the greatest homecoming though. It was dark out when I arrived and Grammy was just finishing walking Sammy when the car pulled up. I’ve been kind of wondering how Sammy would react when I came back, pretty much expecting the cold shoulder for a few days as he got used to me again. As soon as the car door opened though he jumped right up into my lap and as soon as I had laid down on the couch, I mean the very second no exaggerating, he curled up next to me and cuddled and guarded me for the remainder of the night, and continues to as well. Sean had the perfect setting all ready for me. He put up Christmas lights so when I look out the back patio door beautiful white lights frame the lake. He also had soft music playing and the lights dimmed so it would cozy and not stressful, and a welcome home sign above the TV. After months of harsh fluorescent lights, cold rooms, and stark walls it was nice to come home to such a nice environment.

Even though the docs came up with the crazy ICU idea they do still want to send me elsewhere. They first mentioned NIH or UCLA but nobody made any effort to contact anyone or figure anything out. So we took matters into our own hands and my mother looked to the world wide web. We ended up emailing with this wonderful girl who has mito and she has made some great suggestions about doctors in Boston. This girl is a total gift; she has been so helpful to us (we love you Malisa!). Through that connection we have emailed with a mito doc there and he even had a conference call with a couple of my docs here. He said he is willing to follow my mito disease and said that everything in my history points to a mito condition. My internist is going to be talking to a pediatric GI doc in Boston that works with mito patients that the mito doc recommended I see. The mito doc thinks I have bacterial overgrowth in my gut because of my dysmotility and stagnant colon. So we are in the midst of getting this trip set up, there are so many details and things to figure out. Please be praying for wisdom and discernment in this process, stamina while going through this so that I don’t get sicker and have to be readmitted before we leave, and for the doctors who will be taking care of me there. We have heard great things, trying to hold onto some hope but are nervous about new docs, surroundings, etc. My ID doc only wanted me home for a week considering my condition, but I’m guessing it’ll take a little longer than that to get everything planned. I initially wanted to wait until after the holidays to go, but I doubt my body will hold out that long and I really want to feel better.

I’m sorry for the length of this, but did want to let you guys know what has been going on. I am so glad to be home; it is really hard (more work for all of us) and I’m still quite sick, but I cannot tell you how wonderful it is to not have vitals every four hours, be poked with needles every day, and have people in and out of my room every minute. We all really needed a change of scenery. Even food has a completely different texture here; hot things are hot, and toasted things actually have a crisp to them. I really appreciate everybody’s prayers, I know it’s hard to hang in for such a long haul, but they do amazing work. Please be praying especially for my pain management right now. I have been weaning off of IV pain medication so that I won’t be on it for the trip, but it is really difficult to do that when you’re still in lots of pain from the bacteremia. I hope all of you had a great Thanksgiving, and don’t forget to not get too stressed with the upcoming holidays. I love you all!!!!

Your sister,
Bonnie

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Monday, November 7, 2005 1:35 AM CST

Though He slay me, yet I will trust Him. Job 13:15

Oswald Chambers refers to this verse as the most sublime utterance of faith in the whole of the Bible; faith being remaining true to God’s character no matter what He does. Faith by its nature must be tested, because if it weren’t, then how would you know that you had any? Of course, this testing of faith shouldn’t be confused with the result of living; the term “trial” tends to be overused not in reference to actual tests of faith but to events we all experience (anything from misplacing car keys to losing loved ones). But even with these trials and tests it is so awesome to know that in the middle of them we can still trust God.

Now that I am into my 11th month here I am feeling this verse more than ever. A lot has gone on during the last few weeks that made it feel as though God is slaying me. As you know my fever is back again, and my blood grew out three different kinds of bacteria. The physical effects of this have been difficult, despite the pain that this brings I am still weaning myself off of pain medication to ready myself to go home when I am allowed to, but the emotional and mental effects are tougher than usual as well. Everyone needs a vacation from this case at this point. A few of my doctors seem to be acting irrationally and have lost their compassion. One doctor ignores my test results and everything I say and another doctor even went so far as to accuse me of purposefully infecting my central line to make myself sick. There are even more things than those, but all to say that these accusations and behavior are very insulting and hurtful to me. The nurses and some of my other doctors are shocked at this behavior, they see me more and know my character better. The same doctors that are giving me trouble also cannot make up their minds as things change daily. This is one of the reasons that I have not been able to update as much as I’d like, the other reason is that I just don’t feel well, but I keep waiting for a decision to be made that actually sticks so that I can report it.

I will be going to a different medical center, some place like UCLA, Hopkins, or the National Institutes of Health, it is just a question of when. I would like to go home first for a break, so that I can be with my dog and curl up on our couches and just be out of a medical institution. I am too far beyond the end of my rope to be able to handle going out of state right now. That being said the criteria for me to be able to go home changes all the time, and while I used to want to leave this hospital healthy and feeling well, I now know that won’t happen and that I will still be quite sick when I do leave. My hope is to go home on IV antibiotics to suppress the infection enough so that I can be safe at home with nursing care there until I go to a different hospital. I have no idea what will end up happening though. All I know is that the days increasingly get harder, many times throughout the day I could start sobbing at any minute, but I don’t, only because of God. In the midst of feeling as though He is slaying me, or at least allowing me to be, I still trust that He knows what He is doing, fulfilling His perfect plan and sanctifying His daughter to be like His Son Jesus. Even though I have that trust doesn’t mean that there aren’t days where I feel like running away from the hospital, or at least taking a pillow and blanket and going to hide from seeing my doctors in some remote corner of the hospital where no one can find me. I am still frustrated, angry, and completely want to be in a different situation. But Jesus has me here, and here I will stay until He says so.

I realize how long this has been, how many prayers and thoughts have passed through you guys during this long time. I won’t even be able to fully express how grateful I am for that, I know it’s work and the sacrifice is not forgotten by me. I am so grateful for the guestbook entries too, it is wonderful to know that people are reading this and responding to say hello. I think of you all always and hope you are well.

Much love,
Bonnie

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Monday, October 31, 2005 12:00 PM CDT

Another quick update.....Bonnie will be getting IVIG today, and her blood cultures have grown out staph, yeast, and strep. We'll see what the plan will be.....


Sunday, October 30, 2005 2:58 PM CDT

Addendum.....Bonnie's recent blood cultures showed staph. It appears to be an abnormal staph that requires specific nutrition, or it is an anaerobic staph. So her I.D. changed her daptomyacin to maxipime in hopes that that will cover it and bring down her fevers.......


Saturday, October 29, 2005 5:58 PM CDT

Hi all.....Mummy is standing in for Bonnie.....she would like to pass on the news that one of her recent blood cultures came back positive, and that she spiked another fever yesterday (along with the rigors, sweats, and terrible body aches, vomiting and stomach cramping). The doc today put her back on a second antibiotic called daptomyacin in hopes that it will keep her from having those terrible high fevers. Please pray for wisdom regarding whether or not she should keep taking the antibiotics (without doing another antibiotic trial). Also, Bonnie is nervous about going to another facility, especially if it could lead to her demise. She would rather stay at Good Sam with the nurses and docs she knows so well.

More later.....hopefully sooner than later.....

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Wednesday, October 19, 2005 1:11 AM CDT

Hi Folks,
Sorry it has been so long since the last update, things have been up and down here. My fevers continue to be low grade, so exciting that they are lower but they refuse to completely go just yet. I have sprung little red spots all over me called petechiae, and also little blister type things on my hands. We aren’t quite sure what has caused them, it could be something minor or possibly related to my heart or infection. I’ll let you know when we figure it out. I am still feeling the effects of fighting the infection, some days are better than others, but in general I am still feeling pretty crappy and tired. In two weeks I will be going through another antibiotics trial to see if I develop fevers or positive blood cultures. I can’t leave the hospital until I can be fever free off the antibiotics. If I pass the trial then I can go home and continue on another month of antibiotics there. I am still working through stuff though, physical therapy is going well (I can walk almost all the way around the nurses station with a walker and help from the therapist) but I am having trouble balancing my medication levels (some pills aren’t being absorbed and that is causing problems with my electrolyte and anticoagulation levels). On Friday I will be going over to the rehab building to have a bunch of their staff watch me walk so that they can recommend a good brace for my knee. Because of my weakness I guess the way I walk is causing stress on my ligaments. The other thing we are waiting on is a test called a colonography. Because we are still not sure where the infection is my docs wanted to look at my colon since it has been inactive for two years now. A colonoscopy would be too risky to do so they decided on this test that can be done in a CT scanner, a type of “virtual colonoscopy”. Well, they have the scanner and software to do the test but apparently no one is trained to do it. I’m not sure if they are going to try and get someone trained on it or not, so we’ll have to wait and see.

Well I’ve got to go rest, but thank you so much for all of your continued prayers; I appreciated them so much. I hope you all are doing well.

Much love,
Bonnie

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Sunday, October 9, 2005 1:23 AM CDT

Hi,
Sorry about the long time in between this and the last update. I (Mummy) came down with pneumonia and acute bronchitis a week ago, and I have been trying to recuperate. Bonnie's fevers are less (up to 101 at times, but mostly 99 - 100 range). Her white blood count is much lower (6.4 as opposed to high 47.8) and she is eating a little better with the new medication she is on (Marinol). Her immunologist recommended that she have the IVIG every three weeks to help her immunity problems, so she'll be getting that on Monday or Tuesday. The other news is, her docs are thinking of sending her to a medical center that specializes in mitochondrial diseases, or immunological problems. There are no real plans yet, so we will see what transpires during the next few weeks. Bonnie would like to go home for a while before being shipped off to another hospital. It's hard to imagine that she has not set foot outside of this hospital since her surgery over at the Heart Hospital. She misses being home, and especially misses being with her dog.
Bonnie had some fun on her birthday (and the next day, and the next day after that) with lots of cake and candles (blowing out 22 candles while still on her oxygen - not a smart thing to do, but with the room full of nurses one would have thought that someone might have foreseen this faux-pas). Her room is still full of balloons, and she has a beautiful butterfly mobile made by the husband of one of her night nurses. Hopefully, Bonnie will feel well enough to take over the updates soon. She is playing "catch-up" with rest and sleep and is feeling very worn out and tired.

More later.......thanks again for all your prayers, and words of encouragement.

-Lyn

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Friday, September 30, 2005 12:17 AM CDT

Thank you to everyone who has been praying for Bonnie and the rest of us.....the last two weeks have been very hard on all of us. The extreme fevers with the accompanying chills and shaking and high white blood counts have worn her down and she is exhausted. Her docs told her they were thinking of putting her in ICU, taking her off of all antibiotics, and seeing if the source of her infections would become evident. She had her IV in her neck pulled out and it looks like there are two different bacterials growing in the culture from the tip of that line. She had a femoral IV put in on Tuesday, and today she will have that pulled out and a port-a-cath (http://www.deltec.com/products.cfm) put in (1 pm this afternoon). Since her neck IV came out, her fevers have slowly come down to where she has temperatures of 100.2, and not high like the 104.8, 105.8, etc. Her white blood count is also coming down, and we're hoping it won't bounce back up as it has these past couple of weeks.

We'll keep you updated.......

Lyn (Mummy)

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Thursday, September 22, 2005 11:54 AM CDT

Today we found out that Bonnie's white blood count is again very high (43, normal is 5 - 11). Yesterday, her white blood count was normal (10.9). Her red blood cells are low as are her platelets (which is odd since she has had platelet counts far above normal for the past 4 years. Also, one of her blood cultures from this last Monday came back positive for gram negative rods (some kind of bacteria that has yet to be identified). An immunologist was consulted and he has set up a series of blood tests to be done this week. Hopefully, all these blood tests will point to the reason why Bonnie keeps getting these blood infections. Thank you for continuing to pray for her and her docs and for all of us. The last few bouts with the fevers dragged on for over 5 hours, which was draining most of all on Bonnie.......but is quite wearing on everyone. Pray that her antibiotics kick in and kill this bacteria.

More later.......
Lyn (Mummy)

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Monday, September 19, 2005 6:07 PM CDT

Bonnie continues to battle with shivers, shakes, chills, and high fevers.......early this morning it was 104........she is worn out and the docs are looking at white blood cell disorders as well as other genetic defects that might be causing the fevers and high white blood cell counts. She has a PET scan tomorrow (7:30 am) to see if anything shows up there. One of the docs mentioned that her bone marrow may not be working properly (either making ineffective white blood cells, or making them for unknown reasons)........We are praying that they find the answer soon......


Sunday, September 18, 2005 1:07 PM CDT
Hello All! Bonnie has continued to have fever spikes several times a day which is very hard on her system – especially her energy. The spikes also cause pain all over her body. Last night the spike started at 11 pm, began to brake at 230 am, and was back to normal about 600 am at which time we had to change the bedding and PJ’s because they were drenched with sweat.

The docs continue to be at a loss for a course of action and are intensely frustrated at not being able to nail this down. One of the docs covering this weekend has an idea that fits some of the symptoms and might explain what is happening. The diagnostics for that are pending (may include PET Scan and genetics testing).

We have an incredible amount of gratitude and thanks to those supporting us thru visits and food and prayers. So many of you have been faithful in your ministry to us; so consistently and for so long. Also, please continue to call and text. With Bonnie having these fever cycles several times a day her energy level is very low and even talking is sometimes very difficult. Please don’t be discouraged – your voice mails, emails, and messages mean a great deal to all of us!

God is working – he is sustaining Bonnie when her body and mind should have succumbed long ago. He is working on and in those folks who care for Bonnie at the hospital. He is working in and thru those who have continued to support us. Please pray for strength, for guidance for the docs, for pain relief, and for endurance.

Dave

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Wednesday, September 14, 2005 12:47 PM CDT

We're still in a holding pattern as the docs try to figure out what to do next. Bonnie had another fever episode this morning, and her white blood count was 47.8 (normal is 5 - 11). Her body is tired and hurting from all those tiny muscle contractions that occur when she is shivering. She had a bunch more blood tests and will have an indium (nuclear) scan tomorrow. More updating tomorrow......


Tuesday, September 13, 2005 9:47 PM CDT

Bonnie had some ultra sound tests to see if there is infection (or something) causing these fevers. Right now her temp. is 105, and her white blood count this morning was 35.8 (very high). It looks like the fluid from around her lung wasn't the cause of the infection. She has a lot of chills and shaking with these fevers, and she is in a lot of pain. Thank you for continuing to encourage her via the guestbook (I read the notes to her) and for your prayers for her.


Monday, September 12, 2005 12:47 PM CDT

Another update, the xray that Bonnie had this morning showed she had an air pocket near her lung and the doc thought there was a great likelihood that it was infected and had fluid in it. So
Bonnie had a procedure (they said it needed to be done as soon as possible) where they went in and drained the fluid out (about 3 liters). They also left in a chest tube so that it could keep draining for the next couple of days (it is sewed in).....which of course is painful. More later...........




Monday, September 12, 2005 3:37 PM CDT

An update already.......The infectious diseases doc came in and said that he will put her back on the antibiotic he had taken her off of last Wed/Thurs. and will also give her a dose of IVIG (http://www.accredohealth.net/ati/ivig/what_is_ivig.html) to see if that will help her fight the infection. Usually, more than one dose is needed, so we are hoping that if this will help - it will show right away. There is a severe shortage of the IVIG due to the war and the many victims of Katrina......so we are also hoping that the hospital can find a dose for Bonnie.






Monday, September 12, 2005 2:07 PM CDT

Bonnie has been fighting more fevers, headaches, pain, and breathing troubles. Her lungs have been filling up with fluid, and she is requiring more oxygen than before. Her temp. today has already reached 103.4, even though she is on 2 antibiotics and a fungicide (like an antibiotic for fungal infections in the blood). We are waiting to see when her TEE (that procedure where they look at her heart through a camera they slide down her throat) is, and whether that shows any heart infection or not.
Please pray that the docs have wisdom to deal best with her persistent infections, her pneumonia, and her pain. Today we read about "Going Through Spiritual Confusion" with the reference to Matt. 20:22 "Jesus answered and said, ’You do not know what you ask’" Oswald Chambers wrote, "There are times in your spiritual life when there is confusion, and the way out of it is not simply to say that you should not be confused. It is not a matter of right and wrong, but a matter of God taking you through a way that you temporarily do not understand. And it is only by going through the spiritual confusion that you will come to the understanding of what God wants for you." (http://www.rbc.org/utmost/index.php?month=09&day=12).
Hmmmm, seems very apropos........especially as he continues, "Will He find the kind of faith that counts on Him in spite of the confusion? Stand firm in faith, believing that what Jesus said is true, although in the meantime you do not understand what God is doing." Bonnie is definitely standing firm and believing that what Jesus said is true.

Thank you for standing firm with us.....

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Saturday, September 2, 2005 2:34 AM CDT

Another quick update.... Bonnie's been battling her fevers, and is bacteremic....today she had a temperature of 105.8 - twice, and she has had a lot of pain along with the chills and shakes. Her ID doc changed her antibiotics, and we are hoping that the new one kills off the bacteria....more tomorrow.


Hi all,
I'm filling in with a quick update (Bonnie was planning on doing this but she is not doing so well this evening). Bonnie was taken off the antibiotics and fungicidal yesterday afternoon. Today she started feeling achy and tired (more than she had been). Early this evening her temperature shot up to 101, then 102, and now 103.6 despite tylenol. She has been put back on IV antibiotics and they did some blood cultures to see what is causing the infection. She has been shaking with chills, so the nurse gave her some Demerol to stop the "rigors". Tonight, we are praying that Bonnie's fever will stop, and that she can get some rest. At this point, we are not sure what will happen next. Thank you for your continued prayers.

-Bonnie's Mummy


Hi folks,

Sorry it has been so long for an update to come along, I know that so many of you check in every day and I am really touched by that. Things have been moving along, but for the last two days I have felt pretty awful, just really achy and painful all over (probably from the ongoing inflammation) and needing a lot of sleep. I finished the steroids, which may be what is making me feel bad, but unfortunately I still have fluid surrounding my left lung (the plural effusion that won’t go away). The hope was that the steroids would clear that up but it has stayed the same size, and so far there are no plans to put a needle in there and drain it, but we’ll see how it does over the next week or so. I’m still requiring oxygen and breathing treatments, and still get short of breath. I have 10-12 more days of antibiotics, and then I’ll go off of them and then have a trial of probably about 4 or so days to see what happens before we start talking about doing the J-tube surgery. My belly has been hurting a lot for the past few days, but I think I must have eaten some high residue foods that have caused my ileostomy grief, because I’ve been having trouble with that as well. Hopefully it’s just an ileus that will resolve on it’s own and not some sort of obstruction; that type of thing can happen if I eat too much of the wrong thing and I’m still in the process of figuring out what works and what doesn’t. Despite the extra pain I’ve been having lately I think the surgical pain is getting better. I have been able to go down some on my pain medication, although I still get sternal pain from the surgery and bones that are healing together and also when I do activity. I have two more weeks to be on sternal precautions and then I can gradually increase my activity and amount of weight that my arms can use. The opening at the end of my sternal wound was finally seen by the wound nurse this week and with the new dressing she has it has started healing, although is still open. And the wound at the corner of my mouth from the ventilator that got infected has healed up pretty well. Occupational therapy has been discontinued at my request, because I felt they weren’t really doing anything helpful for me, and physical therapy has been going well. While some days I am stronger then others the longest I have been able to walk with the therapist so far is from my bed to the door and back two and a half times. My heart arrhythmias continue, but in order to try the medication they would like me to I would have to move down to ICU for a few days, and the docs are saying that even if the drug didn’t give me any horrible side effects (which it is likely that it would) then it may not even work for me to correct the problem anyway. One of my docs has had patients on it that have used it with success for a period of time and then it stopped working. So we have all pretty much decided to not go with that, so I just kind of have to live with it until they think of something else, which is what I’ve been doing for the last few years anyway. Well, I think that will be all for now. I’ll try to update sooner next time, pending how I feel. I love you all so much, you have no idea how much you mean to me and how effective your prayers have been. To God be all the glory for the GREAT things He has done!

Much love,
Bonnie

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Saturday, August 13, 2005 2:03 AM CDT

Hi all......after Bonnie had her thoracentesis, she started to have problems with her heart rhythm. She had over 150 episodes where her heart beat too fast, and the EKG they did showed she was having atrial fibrillation. Normally, the docs would give folks with this problem some medication to slow the heart down, but in the past, Bonnie has had this type of medication and it paralyzed her for 4 months. She has the episodes, but her heart converts back to a normal rhythms after a couple of minutes. She gets very tired from these, and extra activity seems to aggravate the problem. The docs changed her breathing treatment so the extra pressure won't irritate her heart, and she is breathing in a different drug to help keep her heart calm.

The fluid around Bonnie's heart is decreasing, and the fluid around her lung is increasing (after they took out the 300 cc). Her left lung is improving slightly, but it still is not back to where it was, and she is still on the oxygen. She is working hard with her physical therapy and eating (and breathing too). One of these days she will take over these updates :). Until then, you're stuck with me...........Thanks for the prayers and support! It's unbelievable how long this hospital stay has been........



We read in the Oswald Chamber's book the following, "It is not true to say that God wants to teach us something in our trials. Through every cloud He brings our way, He wants us to unlearn something. His purpose in using the cloud is to simplify our beliefs until our relationship with Him is exactly like that of a child— a relationship simply between God and our own souls, and where other people are but shadows. Until other people become shadows to us, clouds and darkness will be ours every once in a while. Is our relationship with God becoming more simple than it has ever been?"

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Tuesday, August 9, 2005 4:03 AM CDT

Bonnie had her thoracentesis late Monday afternoon (after 9 hours of waiting without eating or drinking for them to see her). The doc was able to get over 300 cc of fluid, and a portion of it went out to the lab for culturing, Tomorrow we will see how well her lung adjusts - we are praying that it will expand and work as well as it did before surgery :).

More tomorrow.......thanks for praying......
.

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Friday, August 5, 2005 10:33 PM CDT

Hi all......It's been a while since the last update......... Bonnie is still dealing with a "postpericardiotomy syndrome" where her body reacted to the surgery by causing too much swelling and fluid around her heart and lungs. Her left lung is still "squashed" from the fluid around it and Bonnie cannot fill that lung with air. She is still on the oxygen and IPB treatments (breathing treatments that force air into her lungs for about 20 minutes every four hours). The docs started her on steroids to try to take down the swelling and fluid, and hopefully, by Monday, her chest and lung pain and breathing troubles will be improved. She did well with walking (with assistance) about 40 feet yesterday, but today, her physical therapist came later in the day and Bonnie was too weak to walk half as far. Today she is quite tired, and has been sleeping a lot. They have been treating her anemia with Procrit and I.V. iron, but the blood doc said that he thinks she is having trouble using the iron in her blood to make new blood (anemia of chronic disease). The great news is, her blood cultures have been negative for the bacterial and fungal infections she's had these last 8 months. The VRE (vancomycin resistant enterococcus), so far, is in her intestines - but not causing a blood infection. Thanks again for all your prayers, notes, etc...........

Ps. 37:3-5

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Monday, August 1, 2005 3:41 PM CDT

Well, things get better, and they get worse. Bonnie is getting up a little more often, but she is in a lot more pain when she does. Her breathing is compromised because her plural effusion (fluid around her lungs) has gotten worse, and it is around both lungs. She had a nother CT scan yesterday, and we are waiting for the pulmonologist to decide whether or not she has to have another thoracentesis, and if she will take steroids to help with the swelling.
Hmmm, a doc is here, I'll add more later......

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Thursday, July 28, 2005 1:08 AM CDT

Bonnie had a CT guided thoracentesis this evening, and the doc took out 200 cc from where her pleural effusion is (fluid around her left lung). Hopefully, this will allow her left lung to inflate at the bottom so that she can breath easier. She also has a large pericardial effuesion (fluid around the heart), and her docs are waiting to see if that will go away on its own. Her heart rhythm is a bit funny, but her EKG looked ok, so they are watching that also. She did a little better walking this morning (she walked to the door and back to her bed with 2 therapists helping her.

She is resting back in her room and watching a movie in between breathing treatments, meds, and other interuptions :).

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Tuesday, July 26, 2005 5:10 PM CDT

A quick update.......Bonnie is still working hard to get some mobility type stuff going. Her lung X-rays are looking worse, so she will go down for a CT scan to find out where the fluid is. She is not getting any air movement in the bottom lobe of her left lung - and it may be collapsed. Her strength is up and down, the physical therapist had her do too much and Bonnie was unable to move any of her muscles for about 4 - 5 hours. Today they are going a bit slower as far as how much she can do physically. She can walk about 20 feet with a lot of help and support from the two therapists. Hopefully, her legs will get much more sturdy so that she can walk on her own :).

More to come.....

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Saturday, July 23, 2005 1:46 PM CDT

Little by little, Bonnie is improving strength wise. She is sitting up 3 times a day, and she is using her arms more (not easy considering the muscles that were cut into). She still needs a lot of sleep, but her voice sounds stronger, and she is talking more. She is eating ok (little bits of snacks), and her fluid restriction seems to be lifted (depending on which doc you talk to), so she can drink and eat ice cream.

She still has the plueral effusion, and her breathing is still "iffy" so she is using the oxygen for most of the day (and night). She has some issues with her blood (too much clotting in her IV lines) so they have doubled her blood thinning meds.

I've been reading the posts to the guestbook to her, and she is much encouraged by your words :). Thankyou! Thankyou also for your continued prayers.......especially that she will conquer these infections and continue to heal and get stronger. It is amazing what God has brought her through!

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Friday, July 22, 2005 1:40 AM CDT

Bonnie had a thoracenticis this afternoon, and she did really well considering that she had to sit up straight and still for the procedure. They took a bit of bloody fluid out of her plueral area and sent it off to be cultured (to see if there is any infection). She tried to take a little walk, but she was too weak. Tomorrow they will try it again without first doing the leg exercises (the exercises may have fatigued her leg muscles too much to be able to walk well).

She is still on a fluid restricted diet (to get and keep her lungs dry) so she is a bit frustrated with not being allowed the drinks she's been used to having (she's allowed 1,000 cc (1 liter) a day. She is eating fairly well - considering she hasn't eaten much of anything since surgery.

Other than that, she is trying to catch some rest in between all the doc visits, and activities. Please pray that she continues to get stronger, that she kicks these infections, and that she heals quickly and that her pain will be considerably less each day. God continues to strengthen her.

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Thursday, July 21, 2005 1:47 AM CDT

Today ended a lot better than yesterday. We got Bonnie up into a chair, but we didn't wait so long to get her back to bed, and she was able to stand and pivot both times (to and from the chair). She also got up a couple of other times today. Tomorrow she will have a thoracentesis done downstairs because the pulmonologist thinks the fluid around her lungs is blood. Sticking a tube into her pleural space (around her lungs) will drain much of it out. She had a louder murmer (heart) today so the doc had an echo ardiogram done at her bedside. We'll find out if that will be sufficient to explain the murmer.

More tomorrow.....

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Wednesday, July 20, 2005 4:40 AM CDT

Dear folks, thank you for all the wonderful notes of encouragement. Please continue to pray that the people taking care of Bonnie have the wisdom to know how to best manage her care and rehab. She has great difficulty with energy and fatigue, to the point where she can't move her muscles (including her eyelids). Today she stood up and sat down, but after 10 or so minutes, she was very weak. Tonight, she sat in a chair and did well until she had a breathing treatment (IPPB) while she was up. She faded so quickly, and she has spent the past 4 hours trying to regain enough strength to be able to use a straw.

Also, she has a rather hectic schedule with all of the ancillary rehab-type people (OT, PT, RT, etc.), and today they didn't leave her enough time to eat her lunch (how rude....). So there will have to be some balancing as the "schedule" evolves. She has a bit of a fever tonight.......

More tomorrow......

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Tuesday, July 19, 2005 2:14 AM CDT

Today was a busy day for Bonnie. She was up in a chair a couple of times, over an hour each time. She aslo stood up and took a couple of side steps. Her lungs look a little better on X-ray, but the docs are still worried about the fluid on her lungs, so they are restricting her fluid intake and giving her diuretics. She is still weak and fatigued which makes it hard for her to get deep enough breaths to expand her lungs and get rid of the fluid.

The good new is that Bonnie was transferred to the 12th floor late this afternoon. Also, the infectious diseases doc took her off of contact precautions, so we don't have to wear those gowns and gloves :). The culture report on the tissue from her vegitation came back positive for a staph bacteria. I thnk we are all glad it is out, and we are praying that she quickly gets rid of these other infections as she recuperates and goes through the rehab process from this surgery.

Of course, more news tomorrow.........

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Monday, July 18, 2005 9:29 AM CDT

Bonnie is still having to work hard at her breathing, and she is still having a lot of weakness. We are hoping she gets transferred up to the 12th floor.....she is still on the oxygen, and she hasn't been allowed to stand yet. Today she'll be re-evaluated, and hopefully "upgraded" to being allowed to stand :). More later.......it's hard to find a phone line here since there is none in Bonnie's room or in the CVICU waiting room......

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Saturday, July 16, 2005 10:14 PM CDT

Bonnie is still having a bit of struggle with her breathing, and her chest X-ray shows that she has fluid in her left lung. They started breathing treatments today, and if tomorrow's X-ray shows the fluid, she will have to have a thoracentesis (a tube stuck into her lung to drain off the fluid). She is sitting up for longer periods of time (still three times a day) and she is eating a little (popsicle, cheese crackers, Gatorade...). She is still not standing (she's not supposed to until Monday), and she is awake for more of the day than she was yesterday.

Still no fevers, and her kidneys tests are looking like they are improving slowly. We are hoping that the strong antibiotics and antifungal meds will not injure her kidneys.

She says that she feels like her ribs are floating.......I guess once her bones heal she feel more stability. I will write more tomorrow :).............................

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Saturday, July 16, 2005 2:23 AM CDT

Friday was a day of more hard work for Bonnie. She was taken off the oxygen for most of the day, but there is concern that she is not moving enough air through her lungs. She sat up three times today, and she was evaluated by physical therapy and speech therapy. She passed the swallow test, but is going easy on the oral intake b/c she is still coughing everytime she takes a sip of liquid. She had bouts if extreme fatigue and muscle weakness, and it is taking some trial and error to try and coordinate how much activity she can handle before going into a crisis where she has trouble breathing.

Her temps have been normal, and her white blood count is still too high (almost 2 times the normal range) but it is slowly coming down. Tonight's nurse put her back on oxygen, and hopefully she'll get enough rest to breath well tomorrow.

She listened to all the latest guestbook entries and was comforted by everyone's notes of encouragement as well as all of the continued prayers.

More tomorrow :).......

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Friday, July 15, 2005 0:40 AM CDT

Another quick update from the CVICU waiting room......Bonnie was extubated (taken off of the respirator) late this afternoon and is working hard to keep breathing so she won't have to have the tube put back in. Her chest drainage tubes were removed this morning and she is a little stronger. unfortunately, her blood culture from the 11th came back positive for vancomycin resistance enterococcus.....which is not good (since it is a resistant bacteria). So she is now on contact precautions (which means we have to wear protective gowns, and gloves when we touch her or her bed).

Other than that, we are hoping that she will sleep tonight (last night was horrific as far as pain control was concerned, so she had little sleep). I was set up to stay with her in her room, but there is a couple of folks that may not make it through the night and the floor policy is fo visitors to stay in the waiting room until people are stable on the unit.

More tomorrow, pray that she continues to improve and that she will fight and overcome this nasty bacteria........

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Thursday, July 14, 2005 0:23 AM CDT

Quick update.....Bonnie is still in the CVICU and is still on the ventilator. They tried twice to take her off, but she is still too weak to breath on her own. She will rest through the night while the machine does the breathing work, and hopefully she can breath on her own tomorrow. She had a fever of 102.4, and a very high white blood count. We are hoping it's all due to the surgery - since it is likely that some infected vegitation got knocked off into her blood during surgery. Her kidneys are complaining, so they are keeping a close eye on that. Also, she still has a lot of pain.

Thanks again for all the prayers.......more tomorrow :)

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Wednesday, July 13, 2005 0:24 AM CDT

Bonnie was in surgery for about 4 hours and was on the heart/lung machine for about 40 minutes. Sher is currently in ICU on a ventilator, and she will hopefully wake up a little in the morning and have her intubation tube taken out (if she looks like she'll breath well on her own. The surgeon was able to take out the vegitation, clean up old scar tissue, and sewed up her PFO (a little hole she has had in her heart). He took out her thymus gland, and took out the month old pacemaker. He sewed on the new pacemaker leads to the outside of her heart and inserted the new generator. Other than that, well, I guess it is evident why it all took so long ;).

We all appreciate all your thoughts and prayers, and ask for you to continue them.....once she is off of the ventilator, she will begin that recovery work and hopefully get up to her favorite floor (12) soon..

More tomorrow.......

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Tuesday, July 12, 2005 1:49 AM CDT

This is Bonnie's Mummy.....today is the day Bonnie is having her surgery. She will be taken downstairs somewhere between 11 am and noon. After removing her new pacemaker and sewing the external pacemaker to the outside of her heart, her surgeon will be doing an open-heart procedure where he will put Bonnie on a heart/lung machine that will oxygenate her blood. Then he will stop her heart and take out all the infected areas around her tricuspid valve. The hope is that he will not injure the valve itself, and that he will get all of the infection (vegitation) out. After he finishes that, he will get her off of the heart/lung machine and start her heart up. Once it is beating, the surgeon will then take out her thymus gland (because of her myasthenia muscle weakness problems). This may take up to five hours, at which time, the surgeon will come out and tell us how it all went.

We won't be able to see her for at least another hour, as she will be taken to ICU on a ventilator. We are praying that she will be strong and that her muscles won't take a vacation after being paralyzed by the medications she will be getting during the surgery. As soon as she can breath on her own, they'll take her off of the ventilator. It may take anywhere from 8 to 48 hours. We will keep you updated.....she is scheduled to stay in the ICU until she is stable enough to go back to the 12th floor. She will still be monitored with the "tele" pack (portable heart monitor), and she will be back with the great nurses and staff she has come to know so well. We don't know when that will be, it all depends on how her body responds to these surgeries.

We are all so greatful for everyone's prayers and notes of encouragement. I will be reading the Guestbook entries to her - I know they will be a big part of her recovery, knowing that all of you are thinking of her and praying for her. She is very aprehensive about the surgery and the painful recovery process, and it's hard to understand the "why". But we are very sure that God has His Hand in every aspect of this process (agonizing as it is). Please pray that this surgery will cure her heart infections, that her epicardial pacemaker (external - on the outside of her heart) works as well or better than the others, that her thymus comes out without complication, and that being on the heart/lung machine will not injure her kidneys or any other organs. Also, please pray for her comfort and strength, especially in the days to come........

Thanks.......

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Wednesday, July 6, 2005 2:26 AM CDT

Hi There,
I'm so sorry that is has been so long since I have last written, I know so many of you faithfully check in to see how I am and pray, and I know it is frustrating without updates. The last week has been rough for me, my body has just gotten overwhelmed with the infection and I've been sleeping A LOT just from sheer exhaustion. After the care conference we decided to do the surgery, but we decided that I needed to have clear blood cultures before we go and open my chest in surgery to cut down on complications. So far they are still positive, and also in addition to the one bacteria that was growing now there is another one and a yeast as well, so three in all. My ID doc told me to stop gardening inside my body, too much is growing. :-) Unfortunately the growth of the yeast in my blood has caused some problems, and we're back to a split decision about surgery. Everyone wants to get the current pacemaker out and put the lead on the outside of my heart, the division of the doctors opinions comes down to whether or not to take the vegetation out of my heart. Some docs think the yeast growth is just a line infection, others think it's in the veggie. Tomorrow hopefully I'll find out who has said what to each other, they aren't communicating very well and it's hard to trust some decisions when I don't feel they have all the correct information from everyone. I'll also be having another echo in the morning to check on the veggie growth.

I have been having a really tough time lately, and hopefully I'll be able to articulate that later when I'm feeling more up to writing. The last six months are really taking their toll, and it is hard to be missing things (a bunch of my friend's weddings, family time back East, etc.) This is what God has called me to though, and I take that commission seriously. There is a cost to everyone who follows Christ, and everything I am going through is the cost of my obedience. I so appreciate your prayers, and I know I always say that is what is getting me through, and I'll keep saying it because it's true. Please keep me and my family in those prayers, this is a tough week for decisions and much frustration, we even may need to have another care conference. I must also impose and ask for prayers for a couple of other things. I have a dear friend who is fighting a tough form of cancer, and she has been so strong and tough throughout everything so far, but if you would please keep her and her family in your prayers as she is still fighting the fight. Also, one of my doctor's dad just had emergency open heart surgery (actually, a similar surgery to what I'll be having), and he is totally stressed dealing with that and his other patients, so if you could be praying about that too I'd be very grateful. I love you guys so much, thank you for being there for me and helping me through this tough time.

Much love,
Bonnie

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Saturday, June 18, 2005 2:13 AM CDT

“For to you it has been granted on behalf of Christ, not only to believe in Him, but also to suffer for His sake.” Philippians 1:29

Whatever my lot, God has taught me to say, “It is well with my soul”.


I wish I could say that I was at the end of my rope. Truthfully, I am so far past the end of my rope that I cannot even see it when I look back. All I can do is inch toward God’s outstretched hand. The last time I wrote I was making some progress, I regret that I do not have that pleasure on this occasion. My ID (infectious disease) doctor decided to have me go off the antibiotics for 48 hours to see whether or not I would get any fevers or other symptoms, and if not, possibly finish up the long course of Vanco I’ve been on. Just about 24 hours after my last dose I spiked a temp around 103 degrees, and had the associated chills, shaking, etc. Blood cultures were drawn immediately and in less than 12 hours they showed that I had the same bacteria growing in my blood that I have been fighting these last few months. Doctors began suspecting several things, doing surgery being among the first, but had to order and wait for the results of several tests before making any final decisions.

The fevers continued, one night causing major problems and keeping everyone up. Once the temp got up to abut 103.8 the nurses pulled off my five layers of blankets, started putting ice packs on me, loaded me with Tylenol, had the antibiotics tripled, and put down a cold mattress pad. I was quite unhappy with all of this and freezing cold, but despite all those measures the fever wouldn’t go down, it continued climbing! Even when it reached its summit (around 104.5), it didn’t plant its flag and head back down the mountain, it decided to pitch a tent and spend the night. It was terrible, six hours to break a fever. Good grief. The antibiotics have now been changed in hopes that they will be more effective.

A bunch of tests have been done so far. Echos of my heart from both the outside and inside of my chest, a WBC scan, a Gallium scan (which I’m still completing), and numerous little things like multiple blood cultures, EKG’s, chest x-rays, etc. The TEE was, once again, a horrible ordeal to go through, and it showed that I still have vegetations in my heart, and also one hanging off the tip of my PICC line now. Based on these results my doctors have concluded that I still have the heart infection, my blood being infected as well, and I now have to have all of the hardware (pacemaker leads and venous catheters) removed from the inside of my heart, because they’re all infected. They want the heart completely empty.

This news was horribly disappointing to all of us, especially me since it feels like everything I’ve been through in the last eight weeks as far as surgeries, procedures, and just trying to get through everything, has been wasted. It has been recommended for the next step that everything be removed from my heart, including my brand new pacemaker. The leads for the next pacemaker will need to be put on the outside surface of my heart, and to do this I will be have to have open heart surgery. I met the cardio-thoracic surgeon today and he said that he will make an incision on the right side of my chest, spread my ribs apart, collapse my right lung, open the sack surrounding my heart, and then sew the pacemaker lead to the outside surface. Sounds simple right? Painless too I bet, yeah right. We still have a bunch to discuss with the doctors, but that is as much as I know so far. If everyone is in agreement I may be having this done next week sometime.

Everything else is kind of up and down. I am still anemic and my kidneys are requiring bicarbonate to correct the acidosis and added electrolytes to balance things out. I have also found out that I am deficient in a blood protein that fights infection, so that is one of the things making this a lot worse than it would in a “normal” person. I’m sure you can surmise that the J-tube surgery has been placed on the back burner. 143 days have gone by here so far, and who knows how many are ahead. I’ll try to update again when I know more, it’s hard when I feel this bad, but I’ll have Mummy fill in when needed. I hope you all are doing well, and know that I think of you often. I truly appreciate your guestbook notes, even the one liners just saying you stopped by, and I covet your prayers. To God be all glory, even in situations where it’s hard to see how He could be.

Much love,
Bonnie

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Saturday, June 11, 2005 2:52 AM CDT

{Another quick update....last night (6/13), Bonnie had more chills and shaking and spiked a high fever of 104.5. She had to have a "cooling blanket" - not very comfortable, especially since everything hurt. She is also on almost 3 times the amount of IV antibiotics she had been on. Please pray that they pin down the source of the bacteria (same kind as was in her heart) and how to get rid of the infection.}



[This is Bonnie's Mummy......About 10 hours after Bonnie wrote the update below, she started to feel worse. She spiked a fever in the late afternoon (102.3 degrees), had blood cultures drawn, and a dose of IV antibiotics (as well as Tylenol). Please continue to pray for her, that whatever is causing the fever will be identified and removed quickly and
completely.]



Well folks, after my mother so graciously took on the task of updating you for these past months I am giving her a break and updating tonight. But before this brief update I just wanted to thank you so much for your prayers and guestbook notes. When my mummy reads them to me at the end of the day I am so encouraged and know that I have been prayed through the day by you and brought through it by God’s amazing grace.

I am currently trying to recover from surgery last week, and am dealing with the pain that results. We are also trying to decide about the next surgery (J tube) and whether or not I am strong enough for it. I am going through a calorie count right now to see if I am getting enough nutrition in. If I’m not then I will definitely be having the surgery, but if I am then we will be discussing the options. My kidneys are still in failure; the numbers are staying in the same range, but have not progressed to the point that I need dialysis (yeah, thank you Jesus!). We were initially told that the antibiotics that caused this problem were only in my system for two weeks, but we have subsequently found that they stay in the kidneys for 120 days, so I’ll be stuck with this for a while. But the bright side of that is that while my kidneys aren’t even dumping waste, they aren’t dumping Potassium either, so those counts have been pretty good. I have also managed to get a blood clot on my PICC line. It was causing a lot of discomfort even after I had it in a while and when they did an ultrasound on it they saw the clot. They aren’t going to anything about it except watch it right now, and also use warm compresses to help ease the pain. The tricky part will be taking it out.

I have been doing the mandatory post-surgery walking, which has not been fun with the amount of pain I have been having. My strength is pretty good despite the six weeks of bed rest, but the rest of my body is not happy being upright. After a dozen or so times of my body being to heck and back my system is rebelling and the recovery is rough. I keep having to remind myself that it will be a while (I want it to be over now!), especially with more potential surgeries. I’ve been told it takes at least three months to recover from the endocarditis alone, never mind with all the procedures I’ve had. One step at a time…

Thank you all again for checking in on me and for praying for me. God has brought me through these last 136 days, and He will continue to bring me through the next – He promised He would. :-)

Much love,
Bonnie

P.S. I am finally on the 12th floor, in room 1226 on C pod. I don’t know what my phone number is, but they can give it to you if you call the main line.

“Commit your way to the Lord; trust in Him and He will do this: He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun.” Psalm 37:5-6

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Wednesday, June 1, 2005 11:56 PM CDT

Bonnie spent four and a half hours in surgery last evening and was brought back to her room late in the evening. She was in terrible pain, and having trouble with coming out of the anesthesia. The surgeon put her pacemaker in under her pec muscles (in the same area that has been operated on twice this year), and the pain affects the use of her right arm.

They also put in the PIC line in her left arm, using the same site that they tried to use on Friday ---- so that is also very painful and makes it hard to use her left arm. The pacemaker is working well (yay!) and so is her PIC line. The pharmacist was consulted regarding her pain and this noon he upped her dose of pain meds so that she would be in less agony.

The kidneys are still not getting better - but they are not getting worse either. Her white blood count was above normal (indicating infection), so that is being watched. Her infectious diseases doctor from February is back on the job, and he said that she will be on antibiotics for at least another 2 weeks.....and for an undetermined amount of time after that. She will also be put back on blood thinners to reduce the chances of her getting more blood clots (they stopped giving her this drug in preparation for surgery).

It looks like Bonnie will be able to move back up to the 12th floor tomorrow. The staff on the 1st floor is geared strictly for cardiac patients, and they don't have much experience with the type of medical problems Bonnie has. The staff on the 12th floor are well-known for their patient care, and Bonnie is quite partial to them (as they are to her).

Both Bonnie and I are hoping to get more than 30 minute stretches of sleep tonight (yawn).....(unlike last night's lack due ti the continual battle with the horrbile pain). She is still idealing with a lot of pain even with the increased meds.

I think we'll go and brush our teeth and sac out :). Thank you again for your prayers, notes, cards, and yummy suppers!

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Saturday, May 28, 2005 2:10 PM CDT

Last night we found out that Bonnie's surgery has been postphoned to Tuesday afternoon (4 pm - or whenever they get to it...). There was a bit of difficulty trying to get an anesthesiologist and operating room time, especially with the long holiday weekend. The interventional radiologist tried to place a PIC line in her left arm on Thursday, but the insertion went along a nerve in Bonnie's arm and she was in too much pain for them to consider leaving it in. So they took it back out. They will try to place another one during surgery.

During surgery, the surgeon placing the pacemaker will first put in another temporary pacemaker wire through a vein in her leg (threaded up into her heart), then take out the current temporary pacemaker wire. He will need to be careful with taking it out because there are clots on it and if one of the clots get knocked off it will cause a pulmonary embolism (blood clot in the lungs that would prevent her blood from getting any oxygen - which means her organs would not get any oxygen). After the wire is out, the surgeon will put in her new permanent pacemaker in with the generator going in on her right side (under a muscle). Then he will remove the pacemaker wire that was threaded up from her leg. Once that is done, she'll remain on the telemetry unit for at leat 24 hours to make sure the pacemaker is working adequatly. Then she can be transferred back up onto the 12th floor to recover, and to prepare for her next surgery (J-tube and internal scar tissue removal).

Her kidney failure continues to progress and the doctors keep watching her blood counts. She is on sodium bicarbonate to control the acidity of her blood (caused by her kidneys being unable to filter out the toxins in her blood). Her antibiotic and blood thinner drug doses were adjusted again to minimize the damage to her kindeys. Her blood counts are dropping again due to her being so sick for so long, and her bone marrow isn't producing enough blood cells, so the blood doctor said to keep on transfusing her with blood when she is anemic.

With all the last-minute changes, and periods of waiting, Bonnie has been learning to continue trusting in God's timing.....that God has still been doing some pretty incredible things in the midst of the madness. She is much encouraged with the posts (I read them to her every day), and the scripture reading from her Oswald Chamber's book often speak to the moment. Thank you for your prayers and encouragement.

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Sunday, May 22, 2005 1:16 AM CDT

Friday, the infectious diseases doctor took Bonnie off of one of her antibiotics because her kidneys have been getting worse, Today, due to the kidney damage, her blood became highly acidic and they had to put Bicarbonate into her IV to treat it. They are keeping a close eye on her blood work, her creatinine is still too high as well as other lab values. She felt terrible today overall and had bouts of extreme nausea and vomiting.

The stitches in Bonnie’s central line have come out (due to it being in so long). As a temporary fix, the nurses are trying to find someone who will come in and stitch it to her neck again. Otherwise, not much else has happened, and we still have not heard of a plan in dealing with the cardiac situation. All of her doctors are off for the weekend and the covering doctors are keeping her stable. We will update as soon as we find out what the plan will be :).

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Wednesday, May 18, 2005 11:53 AM MST

Bonnie started her day out with some IV magnesium (hers was too low) and two units of blood (she has been anemic for some time, but was more so today). After some dog therapy (four dogs came in today) she was taken upstairs for her TEE (the test to look at her heart through her esophagus). She was intubated and sedated, so she has quite a sore throat from the large tube they put into her trachea….and the one that they put in her esophagus. She did well with the anesthesia, and the doctor was able to complete the test. He found that the vegetation on her tricuspid valve had increased in size, and she has a new mass on her temporary pacemaker lead. It is 2 centimeters, and there are multiple smaller masses on her lead (wire). The concern is that the vegetation on her tricuspid valve might spread infection to a new pacemaker. Because of this, the doctor’s opinion is that she should not get a new permanent pacemaker at this time. Also, the 2 cm mass on her current lead is most likely a blood clot, and indicates that she should have the temporary pacemaker wire removed. The doctors have to decide whether Bonnie can have some kind of external pacemaker (one where the wire doesn’t go inside her heart), or if she’ll need to have the current wire switched out for a new one. She is on blood thinners to see if that will shrink the mass.

Bonnie loves it when I read the Guest book notes to her, and she is greatly encouraged by them. So please continue to post even if you have written before. She is humbled by the sheer number of prayers on her behalf, and says that these and God’s strength are what is keeping her going for God’s glory. We love you all :).

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Friday, May 13, 2005 2:05 AM CDT

This has been a tough week, but Bonnie was moved to a room with a view, and the nurse moved her bead so that she can look out of the window into the garden area of the hospital (she could only see a wall outside of her window in her last room). She has continued to have a lot of trouble with nausea and vomitting, and Tuesday her heart kept "pausing" (stopping). They changed out her external pacer and increased the power. While the docs fiddled with the hardware, her heart went up and down in rate and it made her feel terrible. The surgeon today figures that the wire has been in long enough to form some tissue around it, which impedes the current to the muscle (which is why it needs more power than before).

They decreased her doses of the I.V. antibiotics to help with the nausea and vomitting, and to try to preserve her kidneys (her creatinine levels have been rising - indicating that her kidneys are being damaged by the antibiotics). The G.I. docs are recommending that she get her J-tube placed next week either laperscopically or with regular (open) surgery.

Monday she will have another TEE (to complete and augment the last one that was stopped before completion due to vomitting) this time with anesthesia to see if the vegetations are shrinking. The results will help determine when she will get a new permanent pacemaker. The longer she is on the antibiotics - the better chance she has of not infecting the new pacer.

Currently her white blood cell count is elevated, and her sed rate is high - both indicative of an infection process still going on.

Bonnie is appreciative for all your prayers and love and support. She says that these and the Holy Spirit are the only things getting her through this at the moment because she have nothing left in her to get through this herself. Extra prayers for this weekend would be much appreciated as her dad and I are going to be out of town watchng her brother graduate (which she is very dissapointed to be missing).

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Tuesday, May 10, 2005 2:25 AM CDT

Another quick update from Bonnie's Mummy.......Bonnie had a TEE (an ultrasound of the heart where a tube goes down the esphogus to look at at her heart) this morning and the dr. had to stop partway through because Bonnie started throwing up. They got her on her side, but she had been very sedated and she is being monitored to make sure she didn't aspirate.....the dr. did find a vegetation at the base of her tricuspid valve and he said that it could be infected or it could be sterile. He also said that if it is sterile, it could become infected. He didn't didn't have a chance to look at the other vegetations that were seen during the last TEE. The surgeon saw Bonnie tonight, and he said that he would like to do a trial where she would stop taking the antibiotics to see if the fevers come back. They will also do random blood cultures while she is not taking antibiotics to determine whether or not the vegetations are infected. If all is clear, she would be able to have her pacemaker re-inserted. If not, they would need to wait until the infection has cleared (otherwise, the new pacemaker would also get infected and have to come out). After the surgeon speaks with the infectious diseases dr., we will have a better idea of what the plan will be.

More later ;)............

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Sunday, May 1, 2005 12:46 AM CDT

Last night, the hospital closed the pod that Bonnie was in (for a couple of days) so she had to be moved yet again to another room. She is now on pod D in room #139, and her phone # is 602-239-5338. She is still in a lot of pain and her temperatures are staying under the 101 degree mark. They continue to do blood cultures, and we haven't been able to find out what the results are from the cultures done on her pacemaker generator and leads (wires). She's been told that she will be here a while.........

Thank you to everyone for their prayers, cards of encouragement, and support through meals :). They are all very helpful in helping us deal with the situation day by day.

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Thursday, April 28, 2005 1:29 AM CDT

more updating........Bonnie is on the 1st floor at Good Sam (telemetry) in room 116 (pod B). She has a bit of a fever tonight and we are hoping it goes away! She had two drains removed and has better pain coverage than yesterday. She has to be very careful not to dislodge the pacer wire sticking out of her neck. She is on strict bed rest. Her phone number is 602-239-5315.

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Wednesday, April 27, 2005 1:47 AM CDT

Quick update....Bonnie was transferred back to Good Sam this afternoon and is on the telemetry floor on room 526. She was told that she is on strict bedrest because they are worried that her temporary pacer wire could easily get dislodged. Wish someone had said something before we got her up earlier :).....She is in a lot of pain still, and most of her medications aren't accessible yet because there was a 4 hour delay in getting orders (then, of course, the pharmacy has been backed up all evening). More tomorrow :)........


Tuesday, April 26, 2005 1:23 AM CDT

This is an update on Bonnie.....she is in ICU at the Heart Hospital after a successful surgery to get the pacer out. The ventricular lead came out easily, but the atrial lead had a lot of scar tissue which required the laser sheath (to cut through the tissue). The lead itself had an area where the insulation had been worn down to the wire, and blood had gotten into the lead. The doc had this cultured, and we are hopeful that this was the site of the source of her heart and blood infections. The other surgeon did an encapsulectomy (surgically removing the capsule created by scar tissue surrounding the pacer generator).....which is quite painful. There is a special catheter in her neck that has enough ports to house the temporary pacemaker as well as the different IV access lumens. She also has an arterial line. We are trying to make sure that she is comfortable through the night, and that she will be stable enough to be transported back to Good Sam tomorrow.

More later......thanks for your continued prayers :).

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Tuesday, April 26, 2005 1:23 AM CDT

This is an update on Bonnie.....she is in ICU at the Heart Hospital after a successful surgery to get the pacer out. The ventricular lead came out easily, but the atrial lead had a lot of scar tissue which required the laser sheath (to cut through the tissue). The lead itself had an area where the insulation had been worn down to the wire, and blood had gotten into the lead. The doc had this cultured, and we are hopeful that this was the site of the source of her heart and blood infections. The other surgeon did an encapsulectomy (surgically removing the capsule created by scar tissue surrounding the pacer generator).....which is quite painful. There is a special catheter in her neck that has enough ports to house the temporary pacemaker as well as the different IV access lumens. She also has an arterial line. We are trying to make sure that she is comfortable through the night, and that she will be stable enough to be transported back to Good Sam tomorrow.

More later......thanks for your continued prayers :).

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Saturday, April 23, 2005 12:18 AM CDT

Hello from room 1222......As far as we know, Bonnie will be having surgery at the Az. Heart Hospital at 3pm on Monday to have her pacemaker removed. The results from her last blood cultures turned up positive, so the ID doc added another IV antibiotic to her "cocktail". This antibiotic (Gentamicin) has made her weak in the past, but the doc has no choice in what else she can have to keep the bacteria in check. The hope is that taking the pacemaker out will remove the source of infection. She is still having the shivers/shakes/chills and fever spikes. She will spend Monday night at the Heart Hospital and go back to Good Sam on Tuesday to the 5th floor (telemetry). Once the infection has cleared, they will put in another pacemaker.
Thank you for all your support, prayers, meals, and encouraging words. The surgeon is still in Baltimore and we have not spoken with him. He had not wanted to do this surgery because of the vegetations (sites of encapsulated colonies of bacteria) in her heart, but the cardiovascular surgeon said an open-heart surgery would be just as risky and more complicated. The surgeon still needs to review the TEE, so hopefully he'll get a chance to do that before surgery. Bonnie met with the plastic surgeon known as the "praying surgeon" (years ago he did some surgery on Sean - and he prays with his patients). He has procurred temporary privaledges to be able to so his part of the surgery at the Heart Hospital, and he came and spoke with Bonnie and then prayed with her.
Pray that Bonnie's fevers will stop, and that her weakness gets better. The new antibiotic makes her muscles very weak, and increases her need for Neostigmine. Also pray for good success for the surgeries to come, and relief from the pain that accompanies the recovery from those surgeries. Foremost, pray that God will be glorified in all she endures - as well as in how the rest of her family and friends deal with the (oftentimes) crazy things that come up.

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Thursday, April 14, 2005 1:15 AM CDT

This is Bonnie's Mom posting an update at her request. We found out that Bonnie has multiple vegetations in the right side of her heart (infection lesions) as well as on her pacemaker leads. Currently, we are learning about the surgical options involved with removing the leads. She has been on IV antibiotics and a fungicide for the blood infection, yet her blood cultures from yesterday still grew out bacteria. The Infectious Diseases Doctor is adding another antibiotic in hopes that it will stop the blood infection and then her pacemaker wires can be taken out. We still have to talk to the doctor who will do that surgery to see if she will be paced externally for a while until the infection in her heart clears up, or if she will get a new pacemaker right away.
She also had a CT scan that showed some spots on her lung and some fluid (pleural effusion), but that will be addressed after the heart infection is resolved. Her kidneys are still wasting potassium, and the antibiotics she is taking are nephrotoxic (bad for the kidneys). Since she must have the antibiotics, we'll just have to pray that her kidneys remain functional. Thank you to everyone for their support and prayers, and for signing the guestbook. Bonnie read them tonight and was encouraged.....

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Thursday, April 7, 2005 0:55 AM CDT

*PLEASE CHECK GUESTBOOK FOR FUTURE UPDATES*

I just quickly wanted to let you know that I am septic with another life-threatening blood infection. The cultures grew out in less than 12 hours, so this is a pretty vicious bacteria. Antibiotics have been started but my fevers continue to be extremely high. I am feeling awful and am in a lot of pain; please be praying that God will give me His strength, the doctors wisdom, and peace for everyone involved.

Much love,
Bonnie

Oh, how I need You Lord
You are my only hope
You are my only prayer

So I will wait for You
to come and rescue me
come and give me life

And any given day
my heart is filled with praise
and it's all because of You

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Sunday, March 27, 2005 11:59 PM CST

Well folks, still some crazy stuff going on. Last week started with a nuclear scan to check the transit times in my stomach and small bowel. Unfortunately I ended up being down in radiology over twice as long as I should have and was very uncomfortable during the test. The results show that my small intestine is okay but my stomach emptying is impaired, so it takes twice as long to digest than normal, causing my nausea and vomiting.

My kidneys are much worse than they were a year ago, dumping so much Potassium that there is no way I could take enough supplements orally, so they have started me on a medication that helps prevent my kidneys from the Potassium wasting. I was started on a baby dose and have been titrated up (now taking four times the dose I started with) because one of the major side effects is belly pain. Since I already have a bunch of that and am taking pain meds for it I am going to have to wait until the other issues have cleared before I’ll fully be able to tell whether or not I can tolerate the med. I was on a similar med a couple of years ago and couldn’t tolerate it because of the belly pain, but we’ll see how this one does. So far it seems to be helping somewhat, but not enough to have a fix yet.

So Friday I was looking forward to a nice, peaceful day of rest. The *worst* roommate I’ve ever had (and there have been plenty of bad ones) was moved to a different floor, and the doctor that rounds the earliest was out of town and wouldn’t be in until the afternoon, so I got to sleep in. So after my shower, port dressing change and re-access, I was all fresh and even got a dog therapy visit, and was looking forward to taking a nap and even perhaps watching a movie in between consults since the week had been full of tests. Well instead I was told I had to go NPO and that I would be going down for another procedure. My surgeon talked with one of my docs at Mayo and they suspect that there might be some bacterial overgrowth in my small intestine causing my high ileostomy output. So Friday they took a scope and went down into my small bowel and took some biopsies and fluid samples. The rest of the day and Saturday ended up being really bad days, today I felt a little better, but I’m still trying to recover.

Yesterday I also started having some heart palpitations and fast rates, so tomorrow I’ll discuss with internal med and see if we need to get the cardiology team back on board. I may just need to have my pacer checked and adjusted, as it has been a while since that was last done.

Your prayers are being answered, slowly but surely, and in God’s perfect timing, so hopefully I’ll be able to go home soon. Particularly your prayers that I would be a good witness and ambassador for God are being answered in a huge way. I cannot even begin to write about all of the opportunities to share and talk with people that I have had. In the midst of all this yuckiness God is doing things, making His name known and getting me through this. It has been very tough and I am having a hard time, but without Christ it would not be possible at all. To HIM be all glory forever and ever.

HAPPY EASTER!

Much love,
Bonnie

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Monday, March 21, 2005 0:32 AM CST

Happy Palm Sunday! I can't believe that I am still here, stuck at Good Sam. I am still not feeling well and am still fighting through some issues. First the good news though, and that is that as best as we can tell the infection has cleared up. I finished my last dose of the meds last week and so far I have only had low grade temps, not the high ones that indicate infection. So I think we're doing okay in that area. Now the not so good news; I thought I would be able to go home pretty much after I was done with the infection medication, but the docs needed to keep me to make sure I stabilized before I went home. Well, I am still not in stable condition. My kidneys are having mucho problems right now, and they are dumping a lot more Potassium than they ever have before. I have been taking a lot of IV Potassium and the idea of having me completely stable on oral Potassium is just not possible right now. They tried me on the oral stuff and it just caused too much GI upset, to the point that my surgeon told me to stop trying for a while so that I could work on my eating again. My wonderful nephrologist was called in and after running some tests (some of which we are still waiting for the results) he decided that I needed to be on a med that prevents my kidneys from dumping the Potassium. I am always very nervous when starting a new med because I never know how I will react to it, but we are starting at a baby dose and will work our way up depending on how well I tolerate it. The main side effect is GI disturbances, it seems like everything is effecting that nowadays.

I continue to be anemic, not because I'm bleeding from anywhere but because my body is just so weak and depleted that it won't make enough red blood cells. This week we may also consider running some GI transit studies to see where we are at with that, because my belly is really distended and hard right now. So, I'm not sure how much longer I'll be here, I'm hoping to be out for Easter. I already missed the Josh Groban concert that I was supposed to go to with my mother, I got her the tickets for Christmas, so I was bummed about that. However, there is just so much going wrong with my body right now that we need to get stuff at least some what worked out so that I can stay out of here for as long as possible when I'm discharged. I'm still having quite a bit of pain, mostly from my kidneys and belly at this point, and a lot of nausea. So, we'll see. I hope you all are doing great though, and know that I'm thinking aboout you and praying for you.

Much love,
Bonnie

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Sunday, March 6, 2005 11:27 PM CST

Hi Folks,

Well, it’s been a rough few days. I was taken off the med that was supposed to clear up the blood infection on Wednesday due to the significant side effects. I never saw the infectious disease doc on Thursday but when she came in Friday she was quite alarmed that I had been without treatment even for a day. She started me on a new, stronger medication (unfortunately with higher incidence of side effects though) for the next 10-14 days, doubling up the dose for the first day, to see if that will take care of things. Basically this is a really bad type of infection to get, and the fact that it has already infected my blood speaks to its advance stage. It is a very sticky type of organism, which is why they had to take my port-a-cath out, because it can stick to heart valves, my pacemaker wires, anything, so we have to be really careful that this doesn’t get any worse. So far I’ve been doing ok on the meds, I still get a lot of side effects (really bad headaches, nausea, sweating, vomiting, pain, etc.) but at this point I have no other choice, deal with the side effects from the meds or die from the infection. I’m trying to figure out the treatment schedule and how long the effects last, so that I can try to eat and stuff during the few hours that I feel not horrible.

The bacterial infection in my kidneys and bladder seems to have cleared up pretty well, although it is still showing the same fungal bug that is in my blood, but they are keeping me on the Vanco (antibiotic) to make sure that is all gone and ward off any other bugs. It has been pretty evident that my immune system is pretty much shot right now, because all of the indicators that you would usually see showing that your body is fighting infection are negative, meaning that a nasty infection has invaded my body (actually two infections at one point) and my body isn’t even trying a little to fight it off. Tomorrow my docs and I will probably regroup from the weekend, and possibly decide which day to do surgery to put the port back in. I’m not sure how much I’ll be able to update in the following days, it’ll be hit and miss regarding how I’m feeling, but I’ll do the best I can. I will be having my mom check my guestbook every day to read the notes to me though, so please sign it. I really enjoy hearing from all of you and it helps give me strength as I fight through this.

Much love,
Bonnie

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Wednesday, March 2, 2005 11:42 PM CST

Hi,

I don't have a ton of time to update right now, am checking my email for the first time in more than a week and need to get to bed. I've been here at Good Sam for a week now with two bad infections, an enteralcoccal UTI and fungemia (a septic fungal blood infection). I've been on two major antibiotics, which have been taking a lot out of me, and they surgically removed my port on Saturday (which I was so upset about) and placed a triple lumen central line into my neck Saturday as well. Today I was taken off one of the meds because it has been making me so sick, lots of vomiting and lack of nutrition has made healing difficult. Found out later this afternoon after I was taken off the med that my cultures are still growing out the fungus in my blood, so we need guidance tomorrow determining whether I will go back on the med to finish killing the fungus even though it makes me really sick, or if I'll be okay without it. I still have to have a new port placed and I don't know when that will be, probably once my cultures are clear and the docs feel confident that it won't get infected. Not sure what the overall plan is, but will update again when I know more, have more time, and feel up to it. I so appreciate your prayers, been feeling really awful and weak and am solely sustained by God's strength.

Much love,
Bonnie

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Thursday, February 23, 2005 PM CST

*New photos in the album*

Hi Folks,

I am Bonnie'sgrandmother.She has asked me to update this site.Around suppertime today,Bonnie was on her way to the E.R.at Banner Good Samaritan Hospital. Someone will give a better update when we know something. In the meanwhle,please keep bonnie in your prayers,and the family as well.

She sends her love to all!
"Grammy"



"To live your life you've got to lose it, and all the losers get a crown."
Audio Adrenaline

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Sunday, February 6, 2005 6:23 PM CST

Hi Folks,

This will be short, but I ended up in the ER last night. I could tell I was really starting to get behind in my fluids and was vomiting a lot, so home health was set up to give me IV fluids. They didn't make it out to the house until 11pm to access my port and start the IV's and by then I was doing really badly. We tried everything we could but I ended up in Desert's ER at 3am and soon found out that my Potassium was critically low. They poured Potassium through my IV as fast as they could and managed to get it up. The ER doc wanted me to stay but I asked to go home and keep up with the electrolytes at home. So I am back home now, getting fluids and nausea meds through my port, and hopefully that will be enough to keep me out of Club Med. I am getting the max dose of Potassium that they can give me at home though, so if I continue to fall behind then I won't have any choice in going in.

Love you guys,
Bonnie

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Thursday, February 3, 2005 5:06 PM CST

Thanks for checking in folks, I really appreciate the notes in the guestbook and it it’s so good to hear from you. My port was accessed for the first time outpatient this week for labs and it went really well. I had to go to Good Sam for it because there are very strict protocols for dealing with these ports and it has to be done by an RN, rather than just a phlebotomist, with a special kind of needle (non-coring). The needles are huge but the stick isn’t too bad, and I’m told once it heals completely and the more it is accessed that scar tissue will build up and I won’t be able to feel it al all. Now that’s something to look forward to! I’m still getting used to having it there, and when I move certain ways it feels kind of strange. It was the same way with my pacemaker though and will just require some getting used to. My mother keeps joking about how I am balanced now, pacemaker on one side and now port-a-cath on the other. :-) So anyway, when I was put in a room to get my labs drawn four nurses came in to do it. I thought that was a bit much for just me but it turns out one of them was a student, so I ended up being a teaching case, and it turned into quite the production. Since I have to get this done weekly I may end up switching to either having it done at Banner Desert since it is just down the street or having a home health nurse come in.

Labs came back though, showing some dehydration and electrolyte imbalance, although not horribly so. I still have been unable to match my intake and output and having to keep track of them is somewhat cumbersome. I have to call and check in today so we’ll see how that goes, and then next week I see my general cardiologist and my internist. Fun times.

I hope you all have a great week! :-)

Much love,
Bonnie

I waited patiently for the Lord; and He inclined to me, and heard my cry. He also brought me up out of a horrible pit, out of the miry clay, and set my feet upon a rock, and established my steps. He has put a new song in my mouth – praise to our God; many will see it and fear, and will trust in the Lord. Blessed is that man who makes the Lord His trust, and does not respect the proud, nor such as turn aside to lies. Many, O Lord, my God, are Your wonderful works which You have done; and Your thoughts toward us cannot be recounted in order; if I would declare and speak of them, they are more than can be numbered. Psalm 40:1-5

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Saturday, January 29, 2005 5:03 PM CST

Hello,

I am sorry to have not updated here in a while, I am not doing great as of yet and am home on a “trial basis”. I also apologize to the many of you that I owe emails to, hopefully as I get stronger I’ll be able to return to being the email maniac that I am. :-) Not much news since discharge, just a slew of Dr.’s appointments and lab draws that I need in the next couple of weeks, plus a bunch more that I missed while in Club Med that need to be rescheduled. I am still not able to eat very well, and I am a little concerned that I may be getting behind on my fluids, so we’ll just have to see how I do. It is great to be home though, and able to sleep all the way through the night with no interruptions, in my own bed. :-)

It is usually quite difficult to be in the hospital, especially during long admissions, because there is so much to get used to and deal with, and so many things happening that you have no control over. I think sometimes there is a misconception though, that as soon as you go home everything is terrific and back to normal. When you get back nothing is the same as it was before, and you have to deal with the fact that while your whole life was put on hold, that the rest of the world keeps going, and it is frustrating to not be a part of it. Sometimes it is a rude awakening, and almost always it is somewhat awkward when you go back to your old life and find that is has completely changed. I always think it will get easier, and it does in the sense that I have sharpened the tools to deal with it, but it usually still makes me kind of sad to have not been a part of things.

When I am of an objective mindset and removed from the rawness of these new situations, which is most of the time, I don’t feel that I really miss anything, that I was definitely away for a purpose (and was most likely even spared from the meaningless drama that creeps into life). As I struggle through the admission and period after where I am regaining strength to re-enter my schedule, the craving for what the world calls “normalcy” usually starts to creep in and threaten my contentment. Even though there are things in my life that are hard, I do love it because God has created it for His use, and He is doing just that, even in “non-normal” ways. When I do get frustrated though, it is great to remember what Jesus said, “take no thought for your life” (Matt. 6:25). The world tells me I must be concerned with its cares, standards, and happenings, but Jesus says I must not. Ah, contentment returns as perspective is restored by God speaking directly through His word. :-)

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Saturday, January 22, 2005 8:03 PM CST

UPDATE 1/24/05:

I just wanted to quick let you know that I am home now. I'll write more later as I am too tired to now, but I did want to let you know that I was discharged late this afternoon. Praise God! :-)


Hi folks,

I’m sorry it has taken me so long to update, my shoulder area has been quite sore from my port-a-cath surgery. The surgery ended up taking over twice as long as it is supposed to because I have had so many surgeries and procedures in that area that they had trouble placing it. Usually they use the vein under your clavicle but mine was too scarred and they ended up having to tunnel up to my neck and place it in the jugular. The area has been pretty sore but it is slowly improving and once it is healed completely it will be great.

I was supposed to go home this past week but my numbers didn’t line up in time, so now they are looking at Monday hopefully. My grandfather had day surgery here on Thursday and last night my Mom ended up in the ER here with pneumonia. She and Buppa are both at home recovering, so please be praying that they will both heal soon.

I hadn’t checked my email since Monday and realized that my webmail has limited storage and was too full! So I think I’ll have to clear some of that out tonight if I’m up to it. I have changed rooms, so I am on the same pod but am now in room 1223-2. I’ll be here for the rest of the weekend just resting if anyone wants to stop by. Thank you so much to those of you who signed my guestbook, your notes have encouraged me so much and I really enjoy reading them. Hopefully I’ll be out of here soon; it’s hard to believe that I have been here almost a month now. I continue to rest in God’s hands though, so grateful for His presence in my life. The joy of the Lord is what gives me strength. I hope you are doing great and having a terrific day! :-)

Much love,
Bonnie

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Monday, January 17, 2005 11:15 PM CST

Hi Everyone,

Tomorrow (Tuesday) morning I will be having minor surgery to have a port-a-cath placed. There was some back and forth this morning but ultimately we concluded that I really needed the line. Now that the decision has been made the nursing staff has been really encouraging of it and more vocal with their support. I’ll be going down at about 8am.

Overall I think I am improving. My numbers are still not good enough for me to go home, but the surgeon said hopefully it will be sometime this week. He expressed some concern about my current PICC line and possible infection, so even more support for the port. A group of girls came up tonight to pray with me, so that was neat and I appreciated their sacrifice to be here. I know how busy people are and how much of a pain the half hour drive is to get here, but it really means a lot to me when people visit, and helps me get through the days.

I hope you all are doing great and having a terrific day; I think of you often.

Much love,
Bonnie

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Thursday, January 13, 2005 11:46 PM CST

Well, still not much going on here. I have been able to drink some stuff now, so that is an improvement, but my output still is not where it needs to be in order for me to go home. I have been pretty lonely, and the days individually are going by very slowly, but cumulatively they seem to be flying by. I can’t believe I have been here over two weeks already, there are so many other things I would like to be doing and places I’d like to be going. But this is where God has me; somehow He is using me here, that I am sure of, I just don’t know in what way.

The only ostomy nurse remaining here quite last week, so now I guess I’ll have to change my own dressings. Bummer, I was enjoying the vacation from it. :-) We (docs and me) are trying to come to a decision about whether or not to get a port-a-cath. This would be a permanent IV access so I wouldn’t have to worry about getting PICC’s and tunneled IJ’s in the future and would give my damaged veins a break. It would be really nice to have but there are always concerns about infection, so we’ll see. I think about you guys all the time and I hope you are doing well. Have a terrific day and hopefully I’ll be outta here and able to see you soon! :-)

Much love,
Bonnie

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Tuesday, January 11, 2005 4:52 PM CST

I am so exhausted; my body is really starting to wear out now that it has gone about thirteen days with no nutrition. I feel like sleeping all the time. The docs really don’t want to start TPN since I’ve had so many problems when I’ve been on it before, but the nutrition folks are really starting to push for it. The docs have started some vitamins in my IV though, so we’ll see how that works. I’m just getting really weak and am not able to fight as much as I usually am. My PICC dressing needs to be changed later today, and tomorrow I think the ostomy nurse will be in to change the stoma dressing, but other than that we continue to wait and just support me as much with fluids and meds as we can. I hope you having a great day.

Much love,
Bonnie

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Sunday, January 9, 2005 10:54 PM CST

Yesterday was a remarkable day, not just because my good friend Melissa got married, but because something happened which rarely ever does and it is likely that such an event will never again occur during my life. When you are in the hospital you are in it for a reason and they do not let you leave until are well enough to go. Well yesterday I was allowed to leave the hospital for a few hours to be in my friend’s wedding! This would not have happened except for a couple of great doctors who understand that my life will not ultimately be measured by the number of days but by how those days were spent, and some great nurses who were really pulling for me. Also, thank you so much to Cheri, Amanda, and Laurel who helped me get ready. These girls were awesome and made me look so beautiful!

Operation Cinderella started in the morning when Amanda and Cheri met me in my hospital room to get started on my hair. Both these girls have such wonderful hearts and really sacrificed for me to be able to be in the wedding. Amanda did a great job on my hair, everyone commented how great it looked, and Cheri coordinated everyone and set everything up for me. After that I headed over to the church where Laurel was and she got started on my make-up, which turned out fabulous. I’m so grateful for these people, because I was so worn out there is no way I would have been able to get ready on my own. I quickly changed into my dress, headed down the aisle, took a few pictures and then headed back to the hospital. I was in a lot more pain then I thought I was going to be in when I got back, but it was really neat to be a part of the whole thing, if only for a brief time. Also, a big thank you to Tim for walking me down the aisle and for making sure that I didn’t fall over during the ceremony. :-)

I’m still fighting nausea, and I continue to lose a lot of fluid. It seemed like it was starting to slow down a little, but the numbers from yesterday show otherwise. My docs had the weekend end off so I saw the physicians covering for them, but they’ll be back tomorrow so we’ll see what they say. Hopefully I will be able to go home soon; this is dragging on too long for my taste. I hope you all have a terrific day, and please sign the guestbook, I enjoy reading the messages. :-)

Much love,
Bonnie

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Tuesday, January 4, 2005 11:42 PM CST

Hi folks,

Well, the last few days have not brought about any real news or changes. My PICC line has been oozing a lot and required four dressing changes in the last 32 hours or so (ouchy), so they’re keeping on eye on that to make sure it doesn’t get infected. I am in my own room so that should help keep the germs from the other patients to a minimum. I am still losing too much fluid from my ileostomy, so it’s a really good thing that I’m on continuous IV’s. There has been some talk about starting me on TPN again, but it sounds like we’re going to wait a couple more days before actually going ahead with that. So basically they’re just making sure I stay hydrated and that my blood work stays balanced, and trying to control the nausea and pain while waiting for the obstruction to clear.

I am up for visitors though, if anyone wants to come by. If not, then you can always sign the guestbook, I try to check it about once a day and your messages mean a lot to me. Mummy is having her gall bladder removed here at Good Sam on Thursday, so hopefully she’ll be able to get a room up here with me if they decide to keep her overnight. I hope you all are doing well and having a terrific day, and thank you so much for your prayers.

With much love,
Bonnie

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Saturday, January 1, 2005 6:21 PM CST

Well, it’s a New Year folks, and I hope all of you stayed safe and sound celebrating its coming. My mom and I ended up watching the ball drop with Regis by ourselves last night, and were disappointed that there was no fireworks downtown. It has been very interesting to watch the city below, and it has been a lot quieter than I would have expected for this holiday weekend.

Not much happened here today. My surgeon came in and basically said that I am still losing way too much fluid (from ileostomy and also vomiting now) and need to stay on the IV’s. There is really no medication he can give me to fix the problem, and having more tests is not going to help it, and he doesn’t want to take me to the OR right now either. So we’re still just waiting for the obstruction to clear. I told him that I have to be out of here by next Friday because I’m in a wedding, and I’m pretty sure I will be, but we’ll just have to see how the weekend goes and then take it from there. The internist who is covering for my regular doc came to see me as well, and doesn’t seem to understand what is going on. I am so grateful for my surgeon, God has really blessed me beyond what I deserve with this man who really knows what he is doing and cares.

Sammy came for a short visit today, so I was excited about that. The poor guy is having a hard time with me being here, and sits at the door at home waiting for me to come back. Other than that, not much going on, still waiting for the PICC nurse to come up and change my dressing. I read this today:

“The Lord will command His lovingkindness in the daytime, and in the night His song shall be with me – a prayer to the God of my life.”

It is Psalm 42:8; right in the middle of distress comes this bold statement. I felt it to be very true today, even though I was not feeling well and was somewhat lonely, and I know it is true for the days ahead. I hope you guys are having a terrific start to this year, and thank you for your prayers.

With much love,
Bonnie

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Friday, December 31, 2004 5:40 PM CST

Happy New Year!

It's official, I'll be ringing in the New Year here at the hospital with my home team of nurses. It is neat in a way, because some of them have taken care of me for the last 4-5 years and know me really well. My IV clotted off this morning so I had a PICC line placed. When the PICC nurse got the call he only needed to hear my first name to know who it was for. It took a while to get it in, and two attempts later I now have a functioning double line. No news on when I'll be able to get out of here yet, but hopefully soon.

I have a couple of dear friends coming to ring in the New Year with me, and I'm hoping downtown will have some fireworks. It is perfectly framed in my big oval window and the view should be great from up here on the 12th floor.

See you next year!

Much love,
Bonnie

~Please sign the guestbook~

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Friday, December 31, 2004 5:40 PM CST

Happy New Year!

It's official, I'll be ringing in the New Year here at the hospital with my home team of nurses. It is neat in a way, because some of them have taken care of me for the last 4-5 years and know me really well. My IV clotted off this morning so I had a PICC line placed. When the PICC nurse got the call he only needed to hear my first name to know who it was for. It took a while to get it in, and two attempts later I now have a functioning double line. No news on when I'll be able to get out of here yet, but hopefully soon.

I have a couple of dear friends coming to ring in the New Year with me, and I'm hoping downtown will have some fireworks. It is perfectly framed in my big oval window and the view should be great from up here on the 12th floor.

See you next year!

Much love,
Bonnie

~Please sign the guestbook~

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Wednesday, December 29, 2004 5:48 PM CST

Hi,

I just wanted to let you all know that I will probably end up at the hospital tonight. I've been having a lot of problems in the last 15 hours with my stoma dumping fluid and am now really dehydrated. I talked to my surgeon and he thinks I won't be able to catch up on my fluids and is suggesting I go to the ER for IV's. I'm not sure if I'll be admitted or not, but I'll let you know if I am. Hopefully I'll just be in and out. Thanks for your prayers, you all mean a lot to me.

So that His name may be known,
Bonnie

~Please sign the guestbook~

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Wednesday, December 29, 2004 4:01 PM CST

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