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Wednesday, October 15, 2008 2:31 PM CDT
Yeah we are home. We come home late Monday afternoon. So far it looks like his line infection is gone and he just finished his round of Vacno this afternoon. We will have labs drawn again on Friday and that should confirm the infection is gone.
We were not able to try and increase Jake's J tube rate, the GI's did not want to touch it as he was still getting sick. We have an appt with his GI next Friday, but I am also going to get a hold of a couple of big top notch motilty drs to see if they can offer some advice or thoughts on why Jake CIPO is worse and what if anything, we can do to get Jake off TPN. So hopefully I will get some emails or phone calls back soon from those Drs.
That is pretty much it at this point, just trying to get back to "normal" again.
By the way the new picture of Jake is his school picture.
Thanks again
Christine
Sunday, October 12, 2008 7:57 AM CDT
We are able to keep his line... He is on Vanco every 8 hours, but has to run for 2 hours due to the reaction Jake had with it. We also have to give him benedryl 30 mins before each dose...but all in all he is doing awesome on the line infection side of things.
On the J feeding and vomiting side of things, well that is different...He has been sitting at 33 an hour, and I do want to try to push his rate up today so they can see that he is not doing all that well with the increase. We have been struggling with this at home for the last six weeks and since we are here, I would rather try and maybethey will be able to offer us some thought.. I laugh cause they have never been able to give us any thoughts on why Jake struggles so much with his feeds...it is the same old same old, but I a tried of trying to get someone to help me with this. Well this am Jake started to vomit again, and is back to feeling sick ( no different than what we have been dealing with at home since June) so not sure the GI team will let me increase his rate, but I want to at least try. We dealing with some blood counts that keep going down that the drs are concerned with, so I am hoping this is just a lab error...but we will not know until later today if they are...and if they come back low or lower than I am not sure what that means.
We do have to stay here until tomorrow because of bloodwork that is going to be done and needs to be sent out for testing, so we have to wait till Mon, plus he needs to come home on the IV Vanco for 7-10 days, and with all the new IV meds they have added, I need and want my HHC nurse to be the one this all goes thru, plus I want the nurse HHC here that knows Jake well to be the one to get all of this done ( not the crew of the weekend) So everyone will be back tomorrow.
We also were not able to make it to the Circus. They were going to let us do an LOA so we could go and than come back and wait until his labs were done, but when it came back there was an infection, we could not leave...so Jake was pretty bummed about that. The nurses did find him a picture that he did hang up on his wall...so that helps.
Well hopefully we will be back home tomorrow doing the same old...but anything is better than being here..Thanks for thinking of Jakers
Christine
Friday, October 10, 2008 7:15 AM CDT
Jake was admitted yesterday to Children's .It all started Wed afternoon with what we thought was a cycle, by yesterday am, the vomiting was still going on, alot of belly pain and he could no longer his 33ml and hour... After a couple of hours he than spiked a fever of 102.4, and because of his line, a fever needs to be addressed ASAP ( a fever for Jake is about 99.5-99.8)
By the time we got to the ER, he was vomiting every 5 mins and was just pouring out bile...labs were drawn and they started treating him for a line infection, however they think we either caught it early, or it might not be an infection in his line at all ( cultures come back in 48 hour) as his WBC count was normal.
They also took an x-ray that showed a small obstruction again, however not as bad as his obstruction back in June. He very well could have also picked up a GI bug, and that alone can shut every down.
We all agreed that we are going to keep the J feeds running at 20ml and hour cause of my fear of turning everything off that we will not be able to start his feeds again if we stop them. We can not run the TPN until later today as it needs to be made up during the day. Right now his fever keeps going up and down and he stopped vomiting, but feels nausea still. I hope whatever happened, Jake will be able to get back to his rate of 33 without any problems....OHHH this so sucks...I feel like we just took 20 steps backwards instead of even making 1 step forward.
Just hope we can get out of here soon... We are suppose to be going to the Circus tomorrow morning with another Starlight, Starbight function, so I am going to see if we can not leave today if we can get tickets to go to Sunday's show...Jake is so bummed about this.
I will update when we know more.
Christine and Jakers
Saturday, September 27, 2008 7:23 AM CDT
Once again I failed to update this site like I said I would....I am sorry. Things have been crazy with the kids starting school, and me going back to work...:) Which I am very excited about. At this point, I am still looking at a couple of different company's ( hopefully home care) so I hope by the end of next week I will have something lined up.
As for school, Jake and Hannah and doing great. Hannah loves her teacher this year, and I do too, so that is great, and Jake loves school too. He still has the same teacher he had in 1st grade, so going back to school for Jake was alot easier than it would have been if it was a new teacher, and she is knows all of Jake's medical issues, so I know if there is any question or problem, she would let me know in a heartbeat. Infact Jake loves school so much that he will get sick at school, with dierreah and needing to puke, but does not go to the nurse cause he knows they will call me to come get him, so he said, I just do what I have to and than go back to class...of course that brakes my heart. I did tell him that he does need to at least let his teacher know if he is sick, I think I will be calling her too.
On the medical side of things, we did meet the Dr over at New England Medical, and he did feel that we might be dealing with a progressive intestinal Pseudo Obstruction, meaning it is getting worse not better. He also said he strongly feels Jake has an autonomic dysfunction, ( you can read more about this is you goggle it) but that would explain his body temp issues, where he can be cold, and his hands and feet be frozen and it is warm out, or where he can be sweating in the middle of night when it cold out. It also explains his needs for the IV fluids. If he does not get the fluids, he feels tired and sick. Because we are having nurse issues at school, I have not been sending him with the IV fluids and just about everyday he will come home and either feel sick to his stomach, want to just sleep, or have awful headaches. Soon as I hook him up, he perks right up. This is what gets Jake thru his soccer games too. We give him a huge dose of IV fluids and he gets out there and plays his heart out.
So we are now back to square one on Jake. At this point I am beyond frustraded. I can not increase his J rate otherwise he feels sick, bloated, in pain and just down right miserable. His TPN is giving him what he needs to survive, but he is just maintaining his weight at this point. No one has adjusted the TPN since he first started it 4 months ago. I did however talk to the nutrionist at our Home care place and we will be talking on Monday and see if we can either increase the time on the TPN, or add more to it so he can start putting so much needed weight on. He very rarely eats anything by mouth, and when he does, we have to take it out of his stomach a couple of hours later otherwise he is in pain. I think he does most of his eating by mouth at school, cause we have to drain his belly just about everyday he comes home from school.
We did see Neuro last week, and Jake was put on a new preventive for the CVS, and of course his neuro really thinks we need to pursue more testing due to the autonomic dysfunction. Although I am not sold on any of it. Unless it is going to give us answers to how we can Jake back on just tube feeds and grow, I would rather not put Jake thru anymore testing. Of course what I and what may have to be done are two different things, and I realize this.
I think at this point if we can somehow get Jake to start gaining weight he may actually start to feel better too. I was always hoping this would be the case when his gut shut down to begin with, but so far we have not seen this.
I have been fortunate enough to have meet a couple of moms on the Internet that have kids very similar to Jake and after hearing their children's stories, I don't feel so alone in all of this. I also realized that I know Jake the best, and that I need to once again start advocating for him, and pushing his feeds cause the Drs do not have anymore answers for me is not going to work anymore. Jake's body needs a brake, and we have the tools that Jake needs to do this, and we need to start using them and at least try to get Jake feeling good. Quality of life is my number one goal for Jake at this point, and I will do what I can to make sure that happens.
Sorry for this long winded update...I guess I needed to vent...lol...Well today we are actually going to the Boston Aquarium with a bunch of other family's similar to ours, Jake belongs to a group called " The Starlite, Starbright Foundation" and today is a trip to the aquarium...it should be nice time and maybe Jake will meet some new kids that he can relate too.
Well as soon as anything changes I will update...Thanks again for reading
Christine
Thursday, August 28, 2008 8:28 AM CDT
First want to say "School can not come soon enough"...I think both Hannah and Jake are done with the summer...lol I know I am. Well next Tuesday they FINALLY go back to school....YEAH!!! Jake will be starting 2nd grade and Hannah 4th. I think this year is going to be great for both of them.
As for appt yesterday,as always....one word...LONG. But it was just the same as the last, no big change.
We are going to try to increase Jake's J tube rate over the next 6 weeks. I have to do this when he gets home after school and overnight. The plan is that hopefully he will be able to get a night off on his TPN. 6 days vs 7 days...hmmmm, I don't see the difference, but it is a move in the right direction. As of now, his weight is still the same. They are not going to change anything as far as the TPN goes, but I just have to make sure the diarrhea does not come back with the increase of the J-feeds. His diarrhea has since stopped when he was started on the TPN.
My other concern is that he was getting the same amount of calories that he is getting now when he was just on the J feeds and he struggled with weight, so part me hopes that this will once again not be a problem. Again something that we will not know until we get there.
They did tell us it was up to us if we wanted to run IV fluids for Jake during the day. The IV fluids really make Jake feel so much better, more energy. But not sure I want to send him to school with the IV going going. This is something that I need to sit down with the school and talk about. I am comfortable with it to a degree cause, one, he is a ICU nurse at one of our local hospitals, so he is knows how to flush lines and such. And 2, I am 5 mins from the school, that I could be there fast if there was a problem. The other thing the Dr told us we could do is have Jake drink water ( at least 300ml) during the school day and than he would be getting his hydration. Ughh, yeah, there is no way Jake is going to drink all of that by mouth. I could some free water in his feeds, but they are only running at 33 and hour, which is really slow, and than he would also not be getting the full calories. So I am not sure.
Dr B had spoke to a Dr over at Tuffs/ New England Medical Center about Jake . This Dr has called me and we go see him on Sept 9th. I am hoping he will be able to help us, as he has worked with Dr B in the past with kids that have cyclic vomiting, motility issues, he is also world known, which of course makes me nervous cause even Dr B did not think we would get in so soon.. So we do have one more stop to make and see if this Dr has any ideas, thoughts or suggestions.
I will be sure to update after that appt.
On a side note....We got to see Sweet Baby Kaden after our appt and he looks so good....When Stacey says he is a miracle, he sure is, and I saw it for myself with my own eyes. So please continue to keep those good thoughts and prayers going their way....We love you Kaden....and think of you often!!
http://www.caringbridge.org/visit/kadenmorrison
Thanks for checking up on Jakers, and I will be sure to update after our Sept 9th appt
Christine
Saturday, August 9, 2008 10:04 PM CDT
~ADDED NEW PICTURES OF HANNAH & JAKE~
What a wonderful trip to our friends house in the Hamptons. We actually had such a great time that we stayed an extra night. It was 3 days straight of sunny and hot weather, and being on their boat most of the day...it was perfect...just what we all needed. Thank you again Tara and Eric for a wonderful vacation!!!
As for Jake on the medical side of things, everything is pretty much the same. Jake has good days and not so good days. He did have two days of vomiting before we left for our trip, but he wanted to still go regardless.
We go back and see GI on the 23rd of Aug, not so sure anything will change, but I do know that Dr B was going to talk to another Dr regarding Jake, see if he has some thoughts on what happened with Jake's sudden gut shut down.
So I will be sure to update after that appt. Hopefully with some new changes.
And please keep those thoughts and prayers coming for our sweet friend Baby Kaden.
Thursday, July 24, 2008 7:58 AM CDT
Friday, July 25, 2008
I need to add that URGENT prayers are needed for our dear friend Kaden.
Today is the day Kaden will be getting his new transplant. PLEASE visit his site( link at the bottom of Jake's page) and send them your prayers. Also Kaden's Dad will be updating every 2 hours....so please check back often to hear how the surgery is going.
Thank you
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Wow, what a long day yesterday was....all in all the appt went really well. Dr B was not seeing any pts yesterday ( due to a big GI meeting) so he was able to spend alot of time with us, which was good cause so much has happened with Jake since we last saw him.
Jake's weight was up, 45lbs...he has never been 45lbs before....yet I see it more in his cheeks than anywhere else, plus his height....but 45lbs is 45lbs and we will take it. Other than the weight gain, there is really no good news to report....meaning he wants to keep everything as is with the TPN at night and the 30 and hour with his J tube...except he wants Jake to have a couple of hours a day off ALL pumps, so he can just be free of all backpacks and what not. So this works out nice since it is the summer and now I do not have to feel so gulity when he goes swimming. We are not changing anything with the TPN, he is very happy that Jake is doing so well on it. Plus being on the small J feeds the risk of the TPN complications go way down. The other cruddy part is that his bowel sounds are still very faint. So even a a month and a half later, things are not really moving in his GI system.
As for the CVS meds, he wants to change some things, but right now he wants to talk to some others Drs to see what the best way to go is with this. He will also talk to Jake's neuro dr as well. So that is pretty much at this point. We do go back at the end of Aug to see him again, but as it stands, he is not wanting to change much and leave Jake where he is at.
Also for the first time yesterday I donated blood. I was never able to do this cause I did not weight enough...lol...finally yesterday I was able too. Of course Jake found all of this to be very funny...he told the nurse as she was checking my iron and bp. "I can't wait to see my mom get a needle" and he was laughing. The nurse said "really, I am sure your mom will be brave" Jake than says "yeah, but I bet she will cry", than the nurse said "oh you don't want your mom to cry", he said "no, but I do want to her to get a needle", she than looked at him and he than says "well I do, I get a needle done everyday, so now she gets to get a needle done"....and the nurse just looked at him and he says "I have one in now wanna see it"...LOL The nurse thought is was so funny cause she did not expect him to do whip his shirt up and show his needle....In the end I felt so good and I plan to contiune to donate blood as often as I can.
We are going to be going away next weekend to a friends beach house in the Hamptons, so this will be a challange, but Kevin will be going with us so I think this will be a great getaway for all of us.
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Please continue to keep Sweet Baby Kaden in your thoughts and prayers. After finally being able to go home ( 9 weeks in the hospital) Kaden was admitted yesterday back to the hospital due to vomiting blood. Please go to his website and pray for Kaden and his parents.
http://www.caringbridge.org/visit/kadenmorrison
Christine
Saturday, July 12, 2008 10:11 AM CDT
Another night in the ER, but with an actually discharge and not an admission.
I will make this quick as I am still tired and Jake's IV pump is going to go off soon.
I had an appt with my dr for my migraines since I had to cancel my 2nd appt with the neuro when Jake was inpt a month ago, and they have had no appt lefts and now is gone until Sept 16th...Anyway the kids peds office and my drs are in the same building. Around 9am he started saying he was not feeling good, but I just thought might be just his everyday functional couple of times a day vomiting. I started his IV fluids, and he had his J feeds going and we left at 10 to get to my appt by 11.But after that fist vomit it just keep coming, and every 5 mins mins he was puking ( not normal in a cycle when one first starts). I think is what freaked me out.
So he puked the whole way there and I even changed his farrell bag( the bag that drains his stomach contents, gross I know) after an hour cause he was already at 350ml. So we go to my dr, and I did get some scripts for my meds, but she was very concerned with Jake and the amount of puking he was doing. So she called down to the peds office for me and they wanted to see him right away. We get there and the first thing his ped says is "I think you should go to Children's" Of course the first thing I said was " can we at least do an x-ray while we are here" thinking this could save us a trip if all looked well.
So we did, and the x-ray looked ok, but the ped was honest with me and said " with Jake's GI system, I am not sure if this is normal or not, there looks to be no obstruction, but the x-ray is abnormal" So he called Dr B and Dr B wanted us to come to the ER so he could look at the x-rays and see Jake due to the obstruction he already had a month ago.
When we got to the ER, the resident came in and freaked me out and said that there was an obstruction and once again surgery will be in, I than said, " call Dr B now please, I do not even want to talk surgery until Dr B has seen this x-ray." I waited about 15 mins, and than I paged him myself ( do you think she called him, no) I told him what the resident told me and he was down in the ER in a seconds. He looked at the x-ray with me and the resident and said NO there is not evidence of an obstruction, and it is just his GI system is not going to look like the average child due to the surgery's he had. He knows the struggles we went thru with Jake and the word surgery last time, she I think he was upset that the resident even said anything to that affect in front of Jake no less.
Dr B and I spoke for a while, bless his heart, I love this man, I swear, I do not know if I would be sane if he was not the kind of dr he is. He knows Jake's GI system is shutting down and he is not sure why, yet he feels that this obstruction like episodes are adhesions. He strongly thinks's Jake's Roux-n-Y surgery that he had done with the separate J has alot to do with it, he said if he knew that going in and doing the surgery to redo it( put it back to what it should be) would not cause more problems, he would have it done in a heartbeat. Of course that just made me brake down...after all I agreed to to both of those surgery's 4 years ago, so to me I feel as it is my fault. He told me that I did what any parent would do when drs tell them things like surgery will fix things....I think he felt bad for even saying that to me, but I totally know where he is coming from.
Since there was no real sign of a major obstruction and since he is already on TPN, he was comfortable with letting us go home and do his IV fluids and meds, and if I want to take him home, he fully supports me and will be there if I need him by phone. The ER resident and attending wanted to admit him due to all the blood that he was vomiting up and how much and how often he was puking, but thank goodness Dr B was there to make sure they knew the call was mine, unless his labs showed a reason to say. He even called my HHC to make sure they could bring a certain IV fluid due to his sodium being low.
So we are home now, Jake slept good and he feels much better, There just was really NO reason to sit in the hospital overnight to just run fluids and meds. We did not even do the TPN last night cause thorazine and TPN are not compatible.
We left the ER with a dx of CVS, but soon as the feeds were stopped, he started to feel better tonight. Right now the plan is to enjoy our trip next week and if anything goes wrong, gets worse or what have you, Dr B said just call him and he get us transferred back to children's right away. Otherwise we will see him on the 23rd and talk more on what to do next.
We are going to stop the topamax and neuro is good with that cause they feel proplusid is needed at this point. So they are going to put him on Keppra as we have been on every other cvs preventive with no help. They do not feel it will help cause Keppera is not a migraine med, but they do not know what else to do in the mean time.
He feels good now, but his stomach still hurts some, I stopped the feeds last night and will again today an just run the IV fluids and tonight start his TPN up again.
The good news in all of this is that Jake weights 44lbs....when Dr B saw him last night he could not get over how great he looked ( weight wise that is) As hard as TPN can be to put your child on, for Jake, he sure needed it.
I hope to not have to update until our big appt on the 23rd. Until than....thank you
Christine
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Please keep those contiuned prayers for Sweet Baby Kaden. His website is at the bottom of my page in the links.
Tuesday, July 1, 2008 11:06 PM CDT
Just when I thought it could Not get any worse....
Not only did the peds tell us that Jake has Fifth Disease ( which is really nothing, except the poor kids cheeks are fire red) he also started a major Cycle this afternoon....than to top it off, I realize that I had given my HHC our huge IV pump back, when they came and brought up the little one, not realizing I still needed the big one, cause the little one is locked to only give 250ml of D-5 over four hours and than stops. Well when Jake is in a cycle he needs 300ml for the first hour and then it runs at 85 for 12 hours....so I am waiting for them to bring me the big pump back...and I still have to give Jake his TPN tonight along with the D-5 of hydration...the two are compatable, but the meds are not. He has a single, not a double, which just means a long night and alot of work on my part...., and not to mention all the wet pull ups I am going to have to change every 20 mins.
fast forward to 12am on Wed...and all has worked out. Jake stopped vomiting, the meds are working, hydration and TPN are running and I just pray tomorrow is just like any other day after a cycle..." Like nothing happened". Did I say I am just so tired...of course I know Jake is beyound tired with all of this...:(
Still waiting on when our big appt at Children's is, looking like it might be next Thursday, otherwise it will have to be when we get back from our vacation to NH the week of the 14th.
I will update when I know more.
Christine and Jakers
Sunday, June 29, 2008 9:50 AM CDT
On Friday, the team decided to add 4 hours during the day of IV fluids for the next 4 days. With the drainage he has was having and the vomiting, the felt more fluids were needed. Jake's feeds went down to 20 and his TPN has stayed the same.
Thankfully we were able to get rid of the huge IV pump, we got the same pump we have for the TPN...it is tiny and the backpack to go with it. So I can put both his IV fluids and feedings pump in this one backpack. This is better than having to stay attached to and IV pole during the day. Of course the backpack is not as small as his other one.
We are doing the fluids during the day cause he is already having alot of peeing at night, so adding 1000ml of IV fluids to that would just overload him him.
He is also having sweating and flushing during the day, even when he is not out in the sun or running around. So hopefully this will help too.
All his labs for the TPN look great, an his weight is great. Dr B is in Greece right now, but has been going back and forth with the TPN team thru email about Jake. We are suppose to go into clinic in two weeks to meet with Dr B, the TPN nurse and the TPN dr, and hopefully we can change things.
They did tell me that I could increase his rate slowly if I wanted too, but I think I will keep him at 20 for now.
I really want Jake to come off the TPN, more so cause with him being accessed all the time, and having to decasses him for things like swimming and such...I just fear infection. Now that we have the IV fluids going 4 hours during the day, that risk of infection just went up. We have had Jake's port for a year and half and never had an infection. I really do not want to add another thing on his plate.
Anyway...sorry for rambling...I just want to go back to where were before this all happened, the not knowing how things are going to turn out is what is making this hard for me an even harder for Jake when he asks when we can stop all this stuff.
I will update again after our appt.
Wednesday, June 18, 2008 8:44 AM CDT
YEAH....We are home....After 13 days in the hospital, we are finally back home. Yesterday was a crazy day to say to the least. We started the process to get the proplusid/Cisipride ( this is a motility med that Jake was on before and he did great on it, but because it is not FDA approved anymore, you have to go into a special protocol study with Dr Nurko) going with Dr Nurko, we got the EKG and did the blood work, when I went to read the packet again, I was skimming thru the meds that Jake can not be on when on this med, and there was Thorazine...I could not believe it. Thorazine is the only med that has stopped the cycles of vomiting when they start. So for now, we have to put this med on hold. Dr N told me that if we are still TPN dependant a month from now, than we need to think about stopping the Thorazine. Of course I do not want Jake to be on TPN for very long, cause it does come with it's own set of complications, but the thought of seeing Jake have to vomit the way he does when he is in a cycle and there is nothing I can do to stop it....ahh hard choices for sure.
I guess we will cross that bridge when we have to. For right now, Jake has his feeding pump going at 30ml and hour for 24 hours, and than he only has the TPN going at night for 12 hours. Last night was our first night at home with it, and we did have a nurse come out and do some training with us last night. It was alot easier than I thought to learn. Actually learning how to draw up Jake's IV meds for his cycle was alot more intense, the TPN is not hard at all. I am just blown away how small the TPN pump is compared to Jake's feeding pump...too bad they do not make feeding pumps that small.
Jake is feeling so/so, this is what he calls it. He is still feels sick to his stomach and that just brakes my heart. Hopefully things will start to improve soon. I really do not understand how things ended up like this, and the worst part is the drs can not tell me to much on if and when things will improve. I think that is what makes it harder to deal with. I guess for now this starts a new chapter in Jake's life, and I do have faith that once again things will go back to being easy again.
I will updates if anything changes, but for now, I think we are just going to enjoy being home. Again thank you all for your continued thoughts and prayers for Jake. And please also continue to keep sweet baby Kaden in your thoughts and prayers as well. Please visit his site the link is at the bottom of the page.
Take Care
Christine and Jake
Monday, June 16, 2008 12:28 AM CDT
Ok, so today is not the day that we will be going home. He did have a rough night, he got up around 1:30am vomiting. So we bumped his rate down to 35 and he has been doing better. His stomach still feels so/so as he calls it. But no more vomiting. So they need to do some more adjustments on Jake's TPN, cause once we go home, we can not change the TPN rate daily, so if we are going up and down on Jake's feeding pump, we have to make sure he is getting what he needs thru the TPN. We also have to get nursing in place at home. They did not have nursing for tonight. And we also need some training on the TPN before we leave. The nurse who did the port a cath stuff with Kev and I also does the TPN teaching, but she is out today. So it looks like later tomorrow afternoon will be the day.
Some more good news is that it looks like we may be able to start to proplusid process today for Jake. It can take a couple of weeks before Jake gets approved, but if we start the process today, that also saves us a trip to the clinic. Dr N said at some point today, he will be coming by with Dr B and we can sit down and get a plan set for home and the proplusid. So all in all I am very happy with how everything is going, considering everything that has happened.
So that is all to report at this time.
Thank you
Christine
***I also wanted to talk about a very special little boy that is here in Children's as well. His name is Kaden, and he has become a very special friend to Jake and myself. I had meet his mother Stacey thru a tube feeding group that we both belong to. She had been struggling with Kaden's tube feeds, and a visit to the Dr informed them that their dear son Kaden had an extremely rare form of cancer called, Hepatoblastoma, which originates in the liver.
They live in NH and since May 30th they have since been living here at he hospital. They have learned that Kaden will need a transplant that will require a transplant of all existing organs, a stomach, liver, small and large bowel, pancreas and gallbladder. I ask you to please keep Kaden and his parents Stacey and Aric in your thoughts and prayers. I will post his Caringbrige site on the bottom of Jake's as well. Not only have they been dealing and reeling from their son dx, they have also been amazing to Jake, giving him wonderful gifts that he loves. Stacey and Aric truly are amazing people, with one amazing and beautiful little boy. They also have another dear son Aryn, who is Jake's age. Knowing how hard it can be leaving being away from your other child for an extended period of time is what Stacey and Aric also face.
http://www.caringbridge.org/visit/kadenmorrison
Thank you checking in on Jakers, and keeping him in your thoughts and prayers, please also add Kaden and his family to your thoughts and prayers as well.***
Sunday, June 15, 2008 9:45 PM CDT
Jake was started on TPN yesterday and so far he is tolerating it well. His J feeds are going at 40ml per hour. They tried to up it this morning, but after 45 mins he started to feel sick. Dr Nurko came in and said to not push the feeds. So we bumped him back down to 40 and he seems to be doing ok. So far no more vomiting since Friday later afternoon.
So the plan is to hopefully go home tomorrow. We have alot to do in order to get everything placed for home. Jake will be going home on TPN just at night. 12 hours, and his j-feeds during the day time. We are not sure how fast we are to increase, but after hearing what Dr N said, it sounds like we might do one week of a rate and than increase by 5, stay there for a week, and than increase another 5 for another week and so on.
We also talked yesterday about trying to get Jake back on the propluisd... He was denied again in Sept cause his CVS was still very close together. But he said now that Jake has to be on TPN, they kinda of put the CVS in the back burner. So he said he talked to Dr B about this the other day, but now he said I think we should really start that process if it is something you want to do. So hopefully we can get that started soon.
Jake's teacher did come in yesterday to see him, he was so happy. They sat and played games and laughed. It really made his day. Thank you Mrs & Mr Hafford.
Today, Jake's good friend Kayla and Noelle coma into to see Jake. This also made Jake's day, he was so happy to be able to see friends from home. Jake also received cards from more of school friends. If all goes well and we do go home tomorrow, than I will be going to school with him on Tuesday. It is only a half day, which is better, but still he is not 100 BR>
I also wanted to talk about a very special little boy that is here in Children's as well. His name is Kaden, and he has become a very special friend to Jake and myself. I had meet his mother Stacey thru a tube feeding group that we both belong to. She had been struggling with Kaden's tube feeds, and a visit to the Dr informed them that their dear son Kaden had an extremely rare form of cancer called, Hepatoblastoma, which originates in the liver.
They live in NH and since May 30th they have since been living here at he hospital. They have learned that Kaden will need a transplant that will require a transplant of all existing organs, a stomach, liver, small and large bowel, pancreas and gallbladder. I ask you to please keep Kaden and his parents Stacey and Aric in your thoughts and prayers. I will post his Caringbrige site on the bottom of Jake's as well. Not only have they been dealing and reeling from their son dx, they have also been amazing to Jake, giving him wonderful gifts that he loves. Stacey and Aric truly are amazing people, with one amazing and beautiful little boy. They also have another dear son Aryn, who is Jake's age. Knowing how hard it can be leaving being away from your other child for an extended period of time is what Stacey and Aric also face.
http://www.caringbridge.org/visit/kadenmorrison
Thank you checking in on Jakers, and keeping him in your thoughts and prayers, please also add Kaden and his family to your thoughts and prayers as well.
Christine and Jake
Friday, June 13, 2008 7:27 PM CDT
I just what the date is....Friday the 13th...nothing good comes from this day...right??
Well Jake is still struggling with the vomiting and pain when he beeing feed thru his J-tube. As I am sure you can tell, we are still at Children's and will be here thru the weekend. Dr N had come in this afternoon and stopped all Jake's feeds again when he started vomiting. As of now, he is just on IV fluid. Tomorrow they will start Jake on something called TPN/PN (Total parenteral nutrition) this will go directly into his port thru the veins instead of his GI system. This will allow Jake to have gut rest while still getting the nutrition his body needs. He has really been without a steady feed since last Monday, almost 2 weeks ago, and his body needs more than just IV fluid.
The plan looks like Jake will be coming on TPN, and also a very slow rate thru his J-tube. Over the next couple of weeks to month we will be able to increase his J feeds and decrease the TPN. I will know more on Monday about the discharge and how it will work when the GI's come back.
Jake is not very happy with all of this. He really was hoping to come home today, and had a melt down with tears and all when he heard Dr N say that they could not just send him home like this. Jake told him that he just wanted to go to school at least one more day before summer vacation. Tuesday is their last day, so that is why they really wanted to get Jake out today, but his belly had other plans.
Well Again thank you for all the contiuned thoughts and prayers.
Christine
Thursday, June 12, 2008 8:43 PM CDT
Well today went pretty good. I was not at the hospital and did not get a chance to talk to Dr Nurko and Dr B, Kevin did, so I am going off what was reported back to me.
He had the CT scan around 6pm tonight and there are no signs of scare tissue of any kind, and later on, Dr N was able to hear some bowel sounds. So the plan is to restart his feeds tonight. If all goes well Jake could be going home as early as tomorrow night or Saturday afternoon. I hope tomorrow night, but I want to make sure he can tolerate all his feeds without any problems with vomiting and pain again. We really do not want to just have to return a couple days later cause we pushed him out to fast.
I am home tonight again cause Hannah had another playoff softball game that I just could not miss, and it was an amazing game to say the least. They were down by 9 runs, and in the last inning, our girls just were not ready to be done for season. The ended up scoring 12 runs in their last ups...now our girls were ahead by 2 runs. The other team got up to bat, and just like that...1, 2, 3 outs...WE WON!!! So we have the big Championship game Saturday morning that I want so bad to be at. If we win, the girls are the Champions...And not to mention Hannah did an awesome job tonight. She was whacking the ball, and stealing like crazy. She also made two amazing plays on the field too.
So for now we have good news all around. I hope to update even better news tomorrow night. Thanks for the contiuned thoughts and prayers for Jakers.
Christine
Wednesday, June 11, 2008 10:21 PM CDT
Sorry I did not update sooner today, by the time I had any real news, I was also walking out the door to go watch Hannah's softball game, while Kevin is spending the night with Jakers...as I posted this am last night he slept ok...but was up at 6am puking...and puked straight thru until 10am. By this time it was all blood, it was awful to see again, as it was last Thursday that he was vomiting blood too... Dr Nurko came in this am an got another x-ray, that looked good, but Jake no longer had bowel sounds...the resident came in to say that we can restart feeds and see how he does...yeah ok...we have only been doing this feeding thing for almost a week now...let me see how he will handle it... I than said, well if there is no other plan you have than there is no other reason to keep Jake here. I can do all of this at home. She said, yep, let me go let Dr N that all looks good with the KUB and I will be back.
So the I am starting to get things packed up, and the nurse comes in and says, so we will start his feeds at 70 again and get you out of here. I said yep, works for me ( I still had to wait another 2 hours for Kev to come get us). Just as she was going to hook him back up she gets the call from the resident saying do not hook him back up, Dr N is very concerned that he has no bowel sounds and was puking this much and the pain too.
Now I am BS...I am sorry, did the resident not talk to Dr N before telling me what the plan was...OMG I WAS BS...cause again this means, more waiting...mind you we have been playing this back and forth game for days now....when all I want to know is are you concerend or not?
Finally Dr N and the resident came in and said Jake has and obstruction of the bowel and may be caused by Paralytic ileus, in which the bowel doesn't function correctly but there is no "mechanical" (anatomic) problem, also another word for CIPO, which we knew he had. They do think this is caused by Postoperative adhesions or scar tissue, again which we knew was the issue from the day we got there. ( so here is some answers)
So the plan is to stop feeds, which we did today at 10am. Since than has not vomited, but still in alot of pain and draining alot of bile. But gut rest for at least 24 hours is the what is done and than slowly restart the feeds. I was also told that a CT scan might be done, but that is still up in the air. They did tell me I could not take him home and do the IV fluids and feeds myself cause he has got worse in the last two days vs better. They feel something else is going on inside his instestine, but they can not be sure what, so again we wait...Ohh the joys of children with motilty promblems...the waiting game...
I am home tonight, Kevin is with him now and will be thru tomorrow. So after talking to his nurse tonight, it sounds like the "normal" course of treatment for this is the 24 hours of gut rest and than slowly restart the feeds. If he starts to struggle again with the feeds, my guess is that CT scan will be done. That is all I really now. I do also know that Dr N came in around 7pm and still did not hear any bowel sounds on Jake. So I hope by tomorrow they will start to come back.
If anyone has been thru this before, please share any information with me. Dr N can not tell us why this happened and if he will recover from this. Of course he is hopefully, but for a top motility dr, he sure did not have alot of good stuff to share with us when he told us what he feels Jake has.
Poor Jake...he had a total melt down tonight. I felt so bad cause everyday we say were are going home, and every day brought something new. So tonight as Hannah is playing and winning game 2 in her softball playoffs, Jake is on the phone with me crying cause he hates his belly and just wants to come home...and there was nothing I could do or say to make him feel better...
Well I do thank you for thinking of Jakers...it means alot. And Jessica, can I just say that when you brought Eithene by, that was the first time in days that Jake even wanted to get out of bed, and smile no less...she melted his heart too...Gosh that little of girl of yours is so sweet...
I will update tomorrow when I know more
Christine
Wednesday, June 11, 2008 7:29 AM CDT
Still here. Sorry I did not update yesterday, we were hoping to go home, but yesterday was his worse day for vomiting and pain yet. So Dr N felt it was better to keep him here one more night, keep the feeds going and see how he does today. Well it is 8:30am and he has puked at least 4 times (just alot of retching and bile) and he is still in pain. I took him for a walk around the floor to see if getting him out of the bed helped, and he held it in until we got to your room and than got sick.
Dr N said if the vomiting contiuned like this, with the pain than maybe doing a CTscan would be the next move to check and make sure they are not missing anything. I hope the round soon. If they are not going to do the CT scan, than we will be going home today. If they decided to do it, than hopefully later tonight we will be able to go home.
This week has been so hard cause Hannah is in the playoffs for softball, so every night they have had a game from 6-8 so if Jake does not get here by 1pm than he has to come after Hannah's game at 8pm...it is just crazy.
I will update today after they round.
Christine
Tuesday, June 10, 2008 8:43 AM CDT
Sorry I forgot to update yesterday. X-ray looked good, but Jake still can not tolerate his feeds. He gets to a certain amount and starts puking. So we bounce from 60-85 all day long, with turning the pump off, starting IV fluids for a while and giving zofran. The cycle just repeats itself. But this is not a CVS cycle. We are going a little over a week with Jake just not handling his feeds. When he is off them, he feels 100% better, but he needs his tube feeds, this is how he eats.
I am waiting for Dr N to come in and see if they have any other thoughts, my guess is no, so than I will explain at this point I would rather just take Jake home and do all this there. There is no point staying in here for this. So hopefully Dr N has talked to talked Dr B and they are ok with this.
I just need to be able to go home knowing when do I need to be concerned about the vomiting not getting better with the feeds, meaning how much longer do we do this for. And what rate is ok to go home on. His normal is 85 but he can not handle it. It seems like 60 is where he does ok, but this even at 24 hours is not enough to keep the weight on him.
So I will update later, and I hope it is that we are now HOME!!!
Christine
Monday, June 9, 2008 9:24 AM CDT
Dr Nurko just came by and wants another KUB to check the obstruction site to make sure it did not come back...his bowel sounds are there, but very quite and belly a little distended. He vomited again when the Drs were in here, so we stopped the feeds until after the x-ray is done.
Dr Nurko said once he reviews this x-ray and the rest, than he will come back and talk to me as for what the next step would be.
We are going down in about 10 mins so hopefully I will know more in a couple hours.
I really miss Hannah...I really do
Thanks
Christine
Monday, June 9, 2008 6:39 AM CDT
Jake woke up about 6am vomiting. The nurse has turned off his feeds for now, and we will restart them again at the rate of 80(this was the last rate he was able to tolerate in his sleep)in about an hour. Hopefully I can talk to Dr B at some point and see if he would be ok with us going home and doing this at home overtime, or if he thinks we should find the reason why he is all of a sudden not tolerating his feeds.
I will update later after GI comes in.
Christine
Sunday, June 8, 2008 7:20 PM CDT
So close, the drs had all the discharge papers ready and everything, but we are still here. Kev was with him last night and we thought things were going well, but the vomiting came back last night and today. So he is off his feeds again ( cause he vomited a handful of times) and just spoke with the GI ( resident) for a good while. They are going to run more labs and check some things, and than we are going to restart his feeds again at 60, full strenght and see how he does tonight. We put just put him back on the scale to see if he gained anything back after being on his feeds yesterday, last night and today, and being in bed all day...there was all of 2 oucnes...so bummed out. We do not do ounces anymore, he is far to big for ounces to matter anymore.
At this point, we will just get Dr B's thoughts on things tomorrow. All stool came back negative, which I knew, but he may say it is ok to go home on a lower rate and contiune IV fluids for a couple of days at night until he is back up to snuff, if he feels this is also a lingering GI bug. Or if he has any other ideas. On a good note, Dr Nurko is the attending on service now, so maybe he will have some thoughts on if this is motilty or something else. Even though we do not always see eye to eye, he did infact just do Jake's Man testing back in Sept, so he knows Jake's insides too.
So that is all for now....I hope tomorrow brings much better news, like WE ARE HOME....still holding out hope we will be home tomorrow.
Christine
Saturday, June 7, 2008 10:16 PM CDT
I first need to apologize if this entry is all jumbled together, I just hit my wall of being so tired...I could sleep for days.
As I am sure you could have guessed, Jake did not make it home today. We got the pump up to 60 this afternoon and than he started to feel sick and had stomach pain. But thankfully no vomiting. GI felt at this point going home was not good idea, more so because at the rate of 40 an hour of formula, that would not even make his hydration needs, and would need to go back on IV fluids at home. But the other issue is leaving and not finding out WHY he can not tolerate his feeds this whole week is what she thinks needs to be looked into before leaving. Of course I totally understand, nothing like going home for a day, only for your GI to find out you left when your child was not tolerating their feeds, still needs to be on IV fluids now even at home and that he lost 2 and half pounds in 2 days, we would end up being admitted back thru the ER again, and start the process over.
The thing is I am not convinced that his was a stomach bug, such as C-diff or roto virus, well that would explain all of this and something I would feel ok going home and finishing his treatment cause I know it would get better. But we are not ( not even the GI and nurses) that this is a GI bug such as those two I named.
So right now Kevin is spending the night and day with him tomorrow, as Hannah has her big dance recital, and than after that around 5 or 6pm we will head back up there and see if staying one more night until the Real GI drs come back, and Dr B comes back to clinic, and wait and see what the the stool cultures say, or if he is doing so well and showing no signs of distress and pain with his feeds, and than we can come home tomorrow night.
Right before I left, they had his rate at 85 but it was 50/50. This is better than before, but he was still showing signs of pain and feeling sick when I was leaving at 10pm. Kev called to say he was sleeping now, which is good. Tomorrow they will do just straight formula all day and see how he does. Since we know there is no obstruction anymore, there is no reason to back off the feeds unless the pain gets really bad or he starts to bloat.
Well...pray that tomorrow he has a good day and I will once again update if we are home, or are there for another night.
Also wanted to add, while I was home getting new stuff for Jake and picking up Kev and Hannah, Jake's baseball coach and son came in to visit him. He had all the kids on Jake's team sign a get well card for him and also brought in a stuffed tiger for him. It was so cool that they did that, and I think Jake felt pretty special. Kev and I were just sorry that we were not there when they came to visit, but we knew with the time frame they had and what we had, we would not meet up, but they still came anyway. So thanks again coach Joe!!!
Christine
Saturday, June 7, 2008 12:09 AM CDT
Still sitting here at 1:10pm on Saturday afternoon. Jake did not tolerate his formula feeds last night at the slow rate of 40. He ended up vomiting again at 10pm last night. Of course he wanted a little cup of ice cream at 6pm, which the Dr B said was ok, well that is all that came up at 10pm. I am not truly convienced that it was the ice cream that made him sick. In the mean time they turned off the pump, and sent him back down for another x-ray to make sure there was no signs of the obstruction, which was fine. So around 2pm, they restarted just pedilyte at 40 and over the night increased it. He woke up fine, but now he is just pouring it out as dierreah. They did get his rate up to 85 for an hour and he did well with no belly pain or feeling sick, so we just switched over to his formula back at that the rate of 40. We will sit with this for another hour and increase his rate until we hit 85. As long as there is no vomiting in the meantime.
Plus he is also on percautions, which means he can not leave the room. Let's just say he is one unhappy kid about this, cause they wanted to make sure it was not a stomach bug causing the dierreah and vomiting. The crappy part is the lab does not run tests over the weekend for C-diff or roto virus, which we know he does not have, but if he tested negative for those two, since he has never had it, he would have been able to come off percautions and be able to leave the room. So that stinks.
Our goal is still to hopefully get out of here today, but we really have to make 100% sure he is tolerating his feeds at his normal rate, cause I do not want to go home only to turn around and come back in. The other crappy part is that he lost 2.5 pounds since he came in on Thursday. So please just say a pray that he is able to do well today so we can home later.
Christine
Friday, June 6, 2008 6:35 PM CDT
Sorry I did not update sooner, I really wanted to talk to Dr B before I made any finally update and he was in the OR until 6 tonight. Well he came in and was really happy to see the tests all look great, and felt that since we did not have anymore vomiting, and they could start to hear bowel sounds now, that we could just restart his feeds back up. So we started him off on pedilyte at 40 for and hour and he started to feel a little yucky, but was up walking around, so we just went to full strenght formula at 40, and we will keep him here until 9pm, than go back up to 85( his normal rate) and hope he does well thru the night. If so, we can be out of here tomorrow morning.
I had to laugh when Dr B came in, cause I said "can you beleive how much better he looks now than he did when I brought him yesterday", I than said " you had me really scared last night", he said "I had myself really scared last night too"....he said "It takes alot for me to get nervous, and last night I was nervous" Of course I had to bring up the fact that it took how long for him to agree to let us do the IV fluids at home...I said you were nervous there....he started laughing, so I felt so much better knowing that he felt good with Jake being able to go home tomorrow morning and not sit here thru the weekend. I am just so lucky that he was attending right now, I truly think if he was not on service, the surgeons would have taken Jake to the OR last night, cause after all that is there job, and since Dr B knows Jake inside(literally) and out, he knew that going around fishing could just cause more problems for him.
We also talked about changing Jake's meds for the CVS cause, every two weeks again is not good, he feels that if his cycles stay this close together, his chance of herina goes way up, and his chance of another obstruction is also great. So our goal is once again to get the cycles apart, cause he still feels this was a cycle that pretty severe, (although personally I think every cycle Jake has is severe, non severe to me would not not having to be sedated and giving IV fluids in order to stop the cycle)and over the last couple of days his CIPO was acting up, and this time, scar tissue adhesions were the likely cause of the ongoing vomiting, back pain and belly pain.
So that is all for tonight, I really just hope we can move past the 40 mark, but right now he is feeling pretty sick to his stomach.
I will update if anything drastic changes tonight or when we get home tomorrow.
Thanks again for peeking on Jakers
*Jessica, I am sorry but I do not plan to be here next week...LOL you can understand how that goes. But we do have to make a playdate to the zoo again real soon, after the heat wave of course.*
Friday, June 6, 2008 9:58 AM CDT
I wanted to update after I spoke with Dr B, and he just came in to say both x-rays look much better, and looks like the obstruction is gone. He explained to me that is was most likely scar tissue causing this. So at this point, no surgery...YEAH. He will be having a dye test thru his j-tube, this is where they put a contrast in his tube to see if he goes thru the intestine the proper way. If this looks good, than we will restart his feeds and see how he does. If the vomiting starts again, than we need to talk about going in and removing the scare tissue, but at this point, if you can avoid going in, than that is what we want to do...otherwise we just end up causing more scar tissue.
He did say this could be an ongoing problem, or something that may happen again 10 years from now, 2 weeks from now or never again, but because of his CVS, we need to be more watchful of this, cause the last cycle had seemed to bring the obstruction on.
As for how Jake is doing, no vomiting, but he still feels like he is going puke and he still has belly pain. He did get up to go to the playroom for a few, but only last for about 20 mins before he wanted to go back to bed and lay down. He wants to try to get up again now and go back.
I will update after the dye test.
Thanks for reading up on Jakers
Christine
Thursday, June 5, 2008 7:53 PM CDT
I wish I could say that we were home and all went well today, but not the case. We only saw Dr B for all of 10 mins before he walked Jake down to the ER with me. Jake was non stop vomiting, and started having really bad back pains. Dr B first thought kidney stones, as this is very common with topamax, but they did do an ultrasound in the ER and all looked well there, than they did a x-ray of his belly. We we brought upstairs and about an hour later Dr B came in and asked if I had heard the news, I said no, and he said, well Jake has a complete bowel obstruction. I could not believe it.
So were we are right now is, surgery came in, and along with Dr B agreed to do another x-ray at 12 midnight and than one at 8am and see if it looks any better, since he has been off his feeds since 2pm today. So we will know more tomorrow. If the x-rays look better, than they will try to restart his feeds, and if he starts to get sick again, than we will have to decide what to do from there.
The two choices we have right now will be either surgery if the vomiting gets worse, the x-rays do not look any better, or he can not tolerate his feeds, or the BEST case would be he would get better over a period of time. But again Dr B can not tell us what this entails.
He is also not sure if this is going to be a chronic problem for him, or a one time thing. The other two issues are his motility, and already existing CIPO, and the fact he has had intestinal surgery in the past, and things such as scar tissue can cause obstructions, so again putting off surgery if we can is in Jake's best interest as any kind of intestinal surgery can cause more problems for him.
I will update either after his x-ray at midnight, or tomorrow am.
Thanks for keeping Jake in your prayers.
Christine
Thursday, June 5, 2008 8:19 AM CDT
Well here we are day three with the vomiting. We realize now that he does much better when he is just on IV fluids, and as soon as we restart his feeds, he is back to feeling sick and puking again, even with a lower rate and 50/50 formula. So I am bringing him in to see Dr B in Boston today, in hopes that we can bypass the ER, and also in hopes that he does not get admitted. Right now is not the time for this. With Hannah's end of the season playoff games and her dance recitle on Sunday.
Anwyway, thought I would do just a quick update and maybe ask for a little prayer that this is just a case of a bad GI bug and nothing else.
I will update after the appt today
Christine and Jake
Tuesday, June 3, 2008 7:45 AM CDT
Two weeks is all we got this time. Very upsetting that his cycles are getting closer and closer again. He was sent home yesterday from school around 10 with the vomiting. As usual we were able to get him alseep and IV fluids into at home, but he had awful dierreah and stomach pains. I talked to his GI who seemed to think that this was just a really bad cycle, but I think he also has some kind of stomach bug. We were worried we would have to drive into town last night and get bloodwork and an x-ray done, but thankfully Jake's pain did not get any worse, and Dr B reassured me that there was most likley no obstruction, as that was my first thought. He had alot of nasty stomach drainage from his g-tube, so that is what made me think "stomach bug".
Well Jake being Jake, he went off to school this morning. He still said his tummy feels sick and he was still having dierreah, but he looked much better. I think he is nervous that if he misses school today, than he will miss his field trip tomorrow. He is to funny.
Well that is where we stand right now...and there was talk yesterday from his GI about taking him off the med ( topamax) and trying something new, he just does not know which one yet. We don't see GI until the end of July, not sure if we will make a sooner appt or just wait for that one.
School is almost over, which means summer is here...I hope that means Jake will start feeling better too.
I hope this makes sense as I am so tried, but maybe if you can spare some thoughts for Jake that these cycles start to go away...this child has been dealing with this awful monster for almost 2 years now (July of 06) with really no end in sight.
Thanks for reading up on Jake
Monday, May 19, 2008 5:39 PM CDT
Well tomorrow would have been three weeks since Jake's last cycle, but today he came home with a bad headache and within the hour was getting sick. I knew it was also a cycle cause right after the first vomit, he just wants to sleep, and since he can't he just get's really upset. So within that hour I managed to get all of the IV stuff in order and at 5:30 he was fast asleep and comfortable. Of course I am a little sadden that the cycles are now three weeks apart. I really hope that the new dose of the meds kick in soon and the next one is further.
He did wake up a couple of times cause his nose was stuffy , due to the vomit that was coming out of his nose, but he was so tired he did manage to go back to sleep. I am so glad that we no longer have to go for to the hospital for this, I really can not even begin to describe how much it helps to be able to take care of Jake at home, but it is like everything just falls into place and life goes on 12-15 hours later...instead of being on hold for three days cause your stuck in the hospital and have to go thru all the BS that comes with having to be admitted. Waiting for residents to make rounds, waiting for orders to be written, waiting cause that all you do when your inpatient at a hospital...LOL...so to be able to stay home really helps not only us as a family get back into the grove, but also we think Jake gets better alot faster too.
Oh on the side note of the ENT appt. Everything went fine, his ear looks great and his hearing is perfect...so at least I know he really does hear me when I talk to him.
That seems to be about it. Everyone else is doing great. The kids are slowly approaching the end of this school year, I am still kind of shocked that in less than a month, Hannah will be a 4th grader, and Jake a 2nd grader...my goodness where does the time go. Jake has also been making amazing improvements in school as well. We think alot of this has to do with he is not absent like he was when we had to go the hospital every time he got sick. He loves to read and will find anyone that will let him sit down so he can read them a book...lol it is actually really neat to see.
They both have their school field trips coming up. Jake had one last week that was canceled due to the weather, so they are going on another one next week, along with Hannah and her 3rd grade class. So they are both excited for that.
That seems to be it at this point. I hope everyone has a wonderful Memorial Day Weekend coming up, and all is safe and well.
Until Next Time
Christine
Wednesday, May 7, 2008 1:43 PM CDT
The short story is, GI he did great, he actually gained a POUND...and that could not have come at a better time, cause now that he gained that pound, that neuro the chance to up his topamax... So he now gets a total of 175mg a day, 75mg in the am and 100mg in the pm. He was not happy that they cycles were getting closer, but told us if we keep putting the weight on, than we can going up in the med if we have to. But of course with that comes more things we have to watch. He needs to have a kidney scan done sometime in the next 6 months, and he needs to have 2 eye appts in the next year as well...but other than that, I think this is the best med for the CVS and really the only one we have left to be on.
On the GI side of things, with alot of Jake begging, Dr B gave us another hour off the pump, so a total of three hours a day...but we have to try to increase his rate to 90 an hour now. We have two weeks to increase it, if he can not handle it, than we just stay with the 85 and two hours off the pump. Also Dr B was just shocked at how well Jake has been doing at home when he has a cycle...he just could not get over that he was going to school the following day... and to hear him say" well this was the best decision we have made"...I laugh cause he said the same thing after Jake got his port placed...he was so nervous to do both of these things, and so far we have had the port since Dec of 06 and no problems with it at all, and while the home IV stuff is still kinda new, both times went perfect, with Jake boucing back and contiuing with life in less than 12 hours.
So all in all, a great day...Oh and on Hannah, he put her on a regimen and when we go back in 2 months we will go from there if he feels any more testing, such as blood work needs to be done.
Wow, I have to say it is pretty darn awesome to be able to make a post with NO BAD NEWS in it...Jake does have an ENT appt tomorrow, which I hope will be fine, but due to his chronic ear infections in the past and two sets of tubes, it is a good idea he has another recheck.
Tuesday, April 29, 2008 9:41 PM CDT
I guess when things are going good, than I do not update...after his last cycle, he went to school the next day and baseball that following night..BUT Jake started a cycle today...now this is 4 weeks to the day of his last cycle.... Just seemed like yesterday that we were at 9 weeks, than we starting go down to 7 weeks, than 5 weeks and now 4 weeks...I don't get it.
I did talk to the neuro today and he wants to see us next Tuesday either before or after our GI appt...just really stinks cause from what I remember, Jake is pretty much maxed out on the topamax for his weight and for the treatment of CVS...just when things start to go really awesome with getting to do all of this at home, now it seems like the cycles are gettting closer and closer.. I hope this is just a med issue.
At least he is sleeping now, and finally stopped puking...of course we once again had a bad batch of supplies ( this time not the zevex stuff) but the IV Y connectors were leaking...it was awful, I had to stop the IV and the meds, changed the Y connectors three times and they all leaked...finally was told by my HHC that they think it is bad batch, and to not use them at all...so it just means more work for me...which is ok...but still...how is it that supplies, espcially IV supplies be defective...errrrrrr
We also have the higher dose of the Throazine than last time, so hopefully he will not wake up at 11:30 again and start puking...ohh still looking at the bright side of things....we are home and not in the hospital...right.
I am sure he will feel 100 times better tomorrow and off to school and baseball he will go.
Tuesday, April 8, 2008 8:07 PM CDT
OMG....IT WORKED....so far...
Jake started a cycle today, and here we are....HOME.....HOME..
It started a school and before long, Jake had all of his IV meds given, his large bolus over the first hour, and now running at 80 until this bag is done, but the best part is that he only vomited for 2 hours, takes me two hours sometimes just to try into Children's, and more so cause I was really careful as this was my first time doing all this IV stuff myself and I had no nurse either.
I called Dr B AFTER I did everything, and I was so happy to tell him that so far it's worked, that I started to cry....I think more because I was FINALLY able to do something to make the vomiting stop, and not last for 6-8 hours....He was so happy to hear we were able to do this without any problems...he told me to call him if either his blood pressure drops and does not come back up or if I he wakes up vomiting after the second dose of meds are giving. Other wise I will just touch base with him in the morning..
I just pray that Jake contiune to sleep tonight and wakes up a new man tomorrow...can you imagine if he wakes up and feels great enough to go to school.......I never thought I would be so happy when Jake was in a cycle, but after 22 months of every 4-9 weeks of hospital admissions for doing just THIS...How can I not be happy right now...this is such a milestone for us, it is so amazing to have him laying here next to me in MY own bed, in our own house...Thank you God!!!
Also some other good news....at our appt last week, the weight was the same..:( BUT if we can get his rate to 85 than we can take him off the pump for 2 hours a day. This is a great goal to work towards. Plus Jake also starts baseball, it would be nice for him to NOT wear his backpack while he plays.
Tuesday, March 25, 2008 3:53 PM CDT
As usual, it has been a while since I last updated. But that is a good thing. Everyone is doing well. Jake has been struggling with back to back strep throat infections and ear infections ( which we need to go back to the ENT(ear dr) next month) but all in all doing well.
The WONDERFUL news is that FINALLY....the IV pump, IV med machine and all the things Jake needs when he gets sick with a cycle, is now in our house....which means no more ER, no more long drives into Children's, no more waiting 6 or more hours to get him to stop throwing up...the list goes on...but in a nutshell, now soon as we start a cycle, within the hour, we will have the IV fluids running, and all his meds given during this time as well, and *HOPEFULLY* brake the cycle alot faster than we normal do, all in the comforts of our own home, and his own bed. Also this means I do not have to leave Hannah either. HUGE SMILE.
It is lot of work, and I am still practicing from my two hour nurse visit today, but I think I got the hang of it. The meds are the hardest, they have to be mixed and drawn up to such an exact amount, that it is not like giving meds thru his J-tube that is for sure.
Well, we do go back to see GI (Dr B) next Thursday, so I am hoping weight is good, and that we walk out happy...cause right now, not sure there is anything that can make me any happier to know that we no longer need the hospital, unless there was a urgent reason for it, but just for IV fluids and meds, so good be able to stay home.
I will do my best to update...but as I always say, if you don't see updates than that is good.
Until Next Time
Christine
Wednesday, March 5, 2008 7:30 AM CST
Would you believe it, 5 weeks tomorrow is all Jakob made between cycles... He started today and just when I said, no more hospital, we are here....I can laugh about this now, cause I do know this the last stay.
Dr B came down to the ER today, he asked Jake how he was doing, and Jake looked up at him and said, "how do you think I am doing"..and keep puking...soon as Dr B started laughing, than Jake did too, which was good to see, even with bile coming out of his nose... Dr B said he started working on everything today, so by next time we will be able to stay home.
We had been waiting for an hour before they got the IV fluids started, so Dr B went out to a nurse and said, "I would my pt hooked up on fluids and meds given now"....and sure enough the nurse dropped what she was doing and had everything hooked up and going within 15 mins.....I guess he thought it would not be long before I started... at everyone in the ER if things did not get moving...
So all and all, our last ER was a good one, and a fast one. We also got up our floor, with a nice private room...THANK YOU LORD, and one of Jake's long time nurses, it was nice to hear them say "So this is your last stay, we are so happy for you all"....of course he has no idea as he is knocked out cold, but a couple of his other night nurses came in and left him little goodbye notes that he can read tomorrow ( as I knew we will be out of here by tomorrow late afternoon) Jake's nurses on 9E have been so wonderful to him over this last year and half.
Also on the plus side, Jake had a EI, so I get to toss his twice a day med and they are giving him a IV antibotic, so his ear should be feeling much better soon.
Take Care
Christine & Jake
Friday, February 29, 2008 9:15 AM CST
Finally, after a LONG year and half of in and out of the hospital, Dr B gave us the thumbs up yesterday to be able to do all IV fluids and IV meds with Jake at home when he has a cycle...So this means NO MORE HOSPITAL....
OMG...I can't not believe this day is finally here....I still get teary eyed when I realize we can stay home....(tears of joy of course)
Yesterday Kev and I, ok really just me, cause Kev will pass out if he see needles....had a class/appt with the infection control/nutrition nurse, we worked on a dummy to show them how we access Jake's port (his IV line that is implanted in his chest for instant IV fluids) and all the sterile techniqes, well we passed...and than Dr B came up and he said..."Well, if Denise says your good, than we will get everything started, and get everything set in your home right away".
We went over all the complications that we "could" run into,( the same complications we could run into in the hospital too) but that we also know that if anything does not look right, we take Jake right in to Childrens Hospital and that we are in contact with Dr B when he is in a cycle, than he is comfortable with us doing all this at home with Jake.
For those that have followed Jake and his journey with cyclic vomiting, you know this is a major step in the right direction for not only our family, but Jake.
Just had to share this HUGE news with you all.
Sunday, February 24, 2008 7:13 PM CST
Once again, I am sorry that I have not updated sooner...I am not so good with his CB site anymore...I guess when things are going good, you forget to update, so for that I am sorry.
EEG came back normal, which is wonderful. Right now there is nothing we need to do on the neuro end, so that is good. Also some good news, I go to Children's this Thursday by myself without Jake, and I have to have a lesson with Dr B's Clinic nurse. I will work on a dummy doll and she will show me how to use the IV pump and I show her how I access Jake's port-a-cath...so this way she goes to Dr B ( who also called me to say he was going to come by and see me, so this is GOOD) and says all is good, and we are on the next step to be able to do his IV fluids at home.
Why this is taking so long is that I will not have nursing care when Jake is sick, I will basically be his nurse, meaning I start his IV, I give the meds, do all his vital signs, and than start his fluids and than turn him off and take out his IV when he is better. The reason I will not get the nursing care is because he can get sick at anytime, and there are no such thing as 24 hour nursing. Of course when he does get sick, I will call my home nursing place and they will get someone to come over either the following day or when they have a nurse available to stop by.
So once I finally hear "ALL IS GOOD FOR HOME IV FLUIDS", our life will be so much better. The quicker we get him fluids and meds, the quicker we can get him out of the cycle and feeling back to normal in no time, which will also help on the school issues as well.
Also on school, he started his first tutor session right before school vacation, so every Thursday he will stay after school until 3pm with his tutor. And the weeks he misses school due to drs appts or being out due to his CVS, than he can have two days the following week, when he gets back, or if we feel he needs it...so I am very happy with how that has turned out.
This school vacation was great. We took the kids skiing up at the condo at Loon Mt in NH, they had a half day lesson and had a blast, and than yesterday Jake had his school birthday party at Monster Mini Gulf and everyone had a great time.
I am very happy they go back to school tomorrow, but I am sure April vacation will be here before we know it.
Again sorry for the lack of updates, but always know if you don't see an update, than that means things are going great.
Thanks
Christine
Sunday, January 27, 2008 8:19 PM CST
We thankfully were able to come home Friday right after his EEG. Wow, it was tough trying to keep Jake up until 12 midnight and than I had to wake him up at 4am...his test was set for 8am...they needed him to sleep for 20 mins during the test, but they only got 10 mins...he was so tired, but he fought going to sleep..lol...something's never change.
But a first for Jake, was he lost his tooth Thursday night while he was in the hospital...ok...I should his tooth was lose, and his nurse ( who has taken care of Jake since we started with the CVS back in July of 06) thought she would give a shot...well with the help of the rubber gloves, she got a good enough grip of his tooth, all she did was on turn, and it was out...LOL. I think she was in shock at first, and was laughing. Than she made signs for his door, even gave a cup for him to put his tooth in. Than she went and printed a letter from the tooth fairy that I left him...he was so worried that the tooth fairy might not find him since he was in the hospital...but our amazing Child Life Specialists made it that much more better for him, as she left me a bag, and in the bag was a webkinz, silly putty, and a stuffed dog with a book that went with it, and I left him a $1. He was so happy the next morning at 4am when I had to wake him up, he went around all morning with his tooth telling everyone the tooth fairy came last night...oh he melted my heart.
Hopefully I will hear something by the end of the week regarding the EEG results (this is a test that looks a brain activity), the last two he had were abnormal, so a year has gone by and the neuro wants to see it if has got worse or looks better.
We also got an early appt with his GI this Thrusday...So hopefully that will be productive.
I also can not believe that Jake is going to be SEVEN years old tomorrow (28th). We had a nice family party at the house tonight and I am going to have his school birthday party over Feb vacation. He wants to do Monster Mini Golf (indoors) and since Christmas was just around the corner, I would give him a little more time before he gets more gifts.
Well I think that is about it....I will be sure to update any news from the EEG, and if any thing major changes from the GI appt. Now trying to get all the school issues worked out for Jake, hopefully other things will start falling into place.
Until Next Time
Christine
Thursday, January 24, 2008 7:24 AM CST
Well, as you can see from my lack of updates, things have been crazy busy...when Jake is not sick or nothing medical is going on, that is usually when my updates are far and few between...but that is good thing...:)
Jake hit the two week mark, 8 weeks between cycles...he started yesterday morning and by 4pm we were in Children's ER. Of course none of our plans for home care are put in place yet, but I think in the next couple of months we will be there for sure. Our plan on going to Norwood seemed great, until the head of peds called to tell me that they only have a protocol to give IV thorazine in the ER not on the floor, so until he gets the approval, which he said he already started the paperwork for, we should go to Children's where they have everything he needs. So that is why we are here.
I must say...not sure if it was Dr B or what, but boy did we get the treatment last night. I did access his port before we got to the ER cause I figure, if it took three hours to get an access tray to the ER, than I mine as well just do it myself, that is one less thing they have to worry about. So within an hour of walking thru the doors, they had bloodwoork done, fluids starting and meds were starting...not to mention they put him on the top of the list for beds....remember last time we did not get a bed until 5am, and we go there at 8pm. My guess is Dr B must have put something in his chart, cause the ER Dr did say "I understand you are kinda done with the whole hospital thing"...Uhhh YEAH...you think...I started laughing...I said I yes I am..she said, "I understand"...I don't think she does.
The only negative part is that we have a room mate, which we very rarely get, but when the hospital is full, I understand that we have to go where they put this, but they put us with a newborn baby that was up ALL night screaming bloody murder....the baby was so loud that Jake even woke up a couple of times, which his nurse was thinking, this is not good...but he managed to make it thru the night.
Not sure if we will be going home today or not, causes he has a scheduled EEG for tomorrow at 8am here, so it makes more sense to just stay tonight and have the EEG done and than go home after that...usually I am the one pushing to get out us the next day, and the Drs are saying it is ok to stay another night...LOL...did anyone not tell them I do not like the hospital...:)
Well that it for now...if I forget to update when we get home, know we will be out of here by Friday regardless, and If you can all just keep Jake in thoughts that the IV home care starts to pan out over the next couple of months. I will make sure to update when we have plan in place.
Christine and Jake
Monday, December 24, 2007 8:21 AM CST
I know I said I would update on the 10th after our appt, but neither of the appts went so well and being right before Christmas with all the school activites and after school activties, things were non-stop.
As for a GI stand point, we are still struggling with the weight...so I put Jake back on 24 hour feeds, which he is not happy about, increased the rate a little more, and also have been adding Carnation Instant packet to his night time feed. One packet alone has 196 calories. The poor child is getting over 2100 calories a day as it is, but can not gain. So I decided to try something else. The unfortunate part is that he is barley eating anything by mouth now...I knew this would happen, which is why I have been so against increasing his rate anymore, but I was left with no other options.
The urodynamtics test they did that day, also did not work, it was so painful and Jake was not happy at all, they just could not finish the test.
I have yet to hear anything from urology, and I will be placing a call after the holidays to see if they are going to try a med with him.
So that is pretty much it for the medical part of things.
Today is Christmas Eve and the kids are so excitied. Last week their Auntie Katie, got them Hannah Montana tickets, so we went last Thursday to see her in Providence...OMG...now that was scarey...LOL and I am not kidding...a bunch of screaming girls...it was insane...but Hannah and Jake had a BLAST...and we had great seats too.
Well as of right now, we have no appts as of now.
Hope everyone has a wonderful Christmas and a Happy New Year!!!!
Saturday, December 1, 2007 10:35 AM CST
Just a quick update, Jake went into another cycle on Tuesday, once again it was a nightmare of a ER visit...still took 3 hours to get his port accessed and to give the meds...even with Dr B's new ER protocol...I heard just about every excuse under the sun, from the meds have not come up yet to they did not have any more access kits in the ER...so for three hours he continued to vomit and cry.
It was a nightmare to get a bed...Children's is always full...but it was not until 4am in the morning (by the way we got there at 7pm Tuesday night) that finally a new ER dr came in a said they had plenty of surgical beds but no medical beds...I was shocked...of course the nurse in the ER, her excuse was that they wanted to try to get on us on 9E where we are use to...even though I had told her that we have not been on 9E since last Jan...they put us where there is a bed, and we are fine with that. Again this was all in the ER protocol and no one in the ER went by it...not even sure they read it.
Needless to say we did get a room the next morning at 5am...and by 6pm that day, we were out of there. This was the second time we had this experience in the ER in the last two months, and it will be the last. It is sad cause he gets greats care up on the floor and with the GI drs, but in order to get to that point, I have to go thru the ER with him. When we come to the ER, it takes all of 20 mins to get orders, his IV started and meds pushed and that is it...yet it has been taking this long.
We go and see GI on the 10th, and once again I have to express my concerns about this, but I know there is not much more Dr B can do, he did everything he could in his power to make sure Jake was fast tracked right a way. There are two other ER's that do have Children's ER Drs there, and a big pedi floor, unlike Milford...so we might be taking Jake to a different ER cause I refuse for Jake to be treated like this.
The GI NP and our Social worker strongly suggest I write another complaint to pt relations about this ( which Kev will do), will it change for the next time, no.
Well that is it for now...He is feeling much better and back to school and getting ready for X-mas.
I will update on the 10th, as it will be a long, but hopefully productive day.
Thanks for peeking in on Jake!!
Christine
Tuesday, November 13, 2007 8:47 AM CST
Yeah!
We are one step closer to less confusion in my house...LOL You would think it can not be that bad to have a nurse come to the house and do a simple 15 min IV line flush...right...Wrong....It is a hassle, so yesterday they came to teach ME how to flush his line...and it was so simple. Of course I am very anal when it comes to germs so I asked her if I could do the cleaning process twice...LOL
Jake was a great help, he told me everything I needed to do...and was nice enough to say "everyone needs to learn something new sometime, I just wish you were not learning on me"...OMG...LOL he had me and nurse rolling...geesh, you think he could tell I was nervous.
Next month a nurse will come to just watch me, and if I feel comfortable, than the following month I am on my own.
We have such a crazy couple of weeks coming up...Brannon is coming on Saturday for Thanksgiving, Hannah has a girl scouts camping on Friday, than a b-day party. Jake had some testing done last week( non-medical) and this Thursday I should get some answers on how to help him on some of his behavior issues. We do not go back to GI until Dec 11, so we have now until than to get some weight on him...please keep your fingers crossed that we will see a increase.
I hope everyone else is well, and that you all have a wonderful Thanksgiving...it is nice that this year we will be home for Thanksgiving, and not in the hospital.
Until Next Time
Christine
Saturday, November 10, 2007 10:24 AM CST
I am sorry I am a week late on updating...life has been so busy around here, I am lucky if I was able to get on the computer to check my email this week.
Jake had a good appt on Monday. I really can not say enough about Dr B, he is just the best Dr we know, he is always running behind but he always makes sure he spends at least 30-40 mins with us.
Well once again we are still dealing with Jake's weight...this just plain sucks cause no matter what we do, this child can not gain weight. Right now he is sitting at 38.4 lbs and height is 45 inches....he is growing tall, but not in the weight department. Dr B showed me that he has been sitting at the same weight for the last year, give or take a pound or two that he gained sometime last year and than lost and never gained it back. The positive part is that he is still very active, and looks good, just looks very skinny. Right now we did not change his feedings. He is still sitting at a rate of 70 ml an hour for 20 hours. He did not want to increase his rate anymore and did not want to put him back on 24 hours as he does not think the 4 hours a day is going to make much of a difference at this point and the rate increase, he does not want to do that either as he feels the diarrhea he has right now is due to the rate increase. The formula he is on right now is such a high calorie formula, a 1.5 that we can not even change formulas. We go back and see him again on Dec 11 and try to figure out what to do next. He did bring up a couple of other options, we will talk more about those if he feels we need to, Dr B likes to bring things up to me, and than let me have to think about them, as he knows I ususally no right off the bat on something drastic if I do not have time to think about, and he is right.
As for the nightmare in the ER last month...he was notified a couple days later what happened to Jake in the ER, so he knew coming in to the appt I was upset with this. We briefly went over what happened, and he re did Jake's ER plan and inpt plan, he actually ended calling me later night as he promised to see what I wanted the plans to say, than he also added that he is to notified if this was to happen again. He told me to call him when we go to the ER (I stopped calling him cause it just became so routine and I did not want to bother him, and we had never had an issue like this before) and he would call and speak to the head attending in there and explain how Jake needs to have treatment right away, and even agreed with his port and all, there is no excuse for care to take that long...he said if there was no rooms, they could have easily set him up in the triage room with IV fluids and meds. So once again, cause you know I am never NOT going ask him, if he could PLEASE consider doing IV fluids at home...LOL before I let him answer, I said " I know, but I just had to ask"....he said he still is not comfortable due to the abnormal blood work and the low blood pressures...he said, it would be more stressful if you were at home, cause he would most likely have us come to the ER anyway if any of his blood work is off or blood pressure was low....and I can appreciate that...and I do.
But on the flip side, he was happy to know that our HHC nurse is going to teach Kev and I, ok really me, cause Kev passes out at the site of needles, how to access and flush Jake's port a cath ( his IV line) They were suppose to come on Friday, but the nurse screwed the times up and Jake had a cub scout veterans dinner at 5pm, and she was told to be here between 4-5pm...well we ended up canceling it, and a nurse will be coming on Monday....so that is good maybe even better cause Kev can "try" to watch and learn laying on the couch..LOL. Now looking at what a pain this whole thing is with HHC, I am glad to know that I will no longer have to depend on someone else, when Jake needs his monthly flush, it takes all of 10 mins and that is all, no more 3-4 hours time frames for what takes 10 mins, and never mind all the paper work.
So that is pretty much it. I am very happy with our new plans and I would like to say, I hope we do not have to use them again anytime soon, but I will take 4-6 weeks now than every other week, as I have always said, things could be so much worse...and I am grateful everyday for Jake, Hannah, Brannon ( by the way will be here a week from today...YEAH) and Kevin...and last but not least, my family...I am blessed with such a wonderful family support system, not sure what I would do if I did not have one, and I do not say that as often as I should to them...So Thank you for all you do.
Again, sorry this is late, I also thank you all for coming to read about Jake, even if you don't sign his guestbook, I do get the personal emails from you and I thank you for such kind words. I think Jake is pretty amazing too, and lucky that God made him just for me and Kevin.
Until Next time
Christine
Sunday, October 21, 2007 8:14 PM CDT
I apologize for not updating that we did come home last Friday. We ended up staying an extra day due to what time they were able to get the meds and IV started.
I was able to talk to the hospital regarding what happened in the ER, and they did not take it lightly. They have been in contact with me and let me they were dealing with it. I also have a couple of phone numbers and people to call if this were to ever happen again. I hope it does not.
We did make and appt to see our GI in two weeks...and this will be brought up again. I am not 100% sure that he is going to give us the ok to do the IV fluids and meds at home when he is sick, but I am sure he will redo another protocall for the ER and he will also make me a hard copy that I can take with me, so when we are inpt, the GI team will just follow that, instead of making us wait to move things along when Jake starts to feel better. Again CVS is very different than a stomach bug when it comes to vomiting. Once the vomiting stops, they feel very normal, want to eat...and do not feel horriable for a couple of days like you do when you have a vomiting with a stomach bug.
Also we are having a nurse come to the house in a couple of weeks to teach us how to flush Jake's port...I am very nervous to do this, but in the end it makes more sense for us to do this, rather than have a nurse come to do what normally takes all of 5 mins.
I will update after our GI appt on Nov 5th. Thanks for checking on Jake.
Until Next time
Christine
Thursday, October 11, 2007 3:42 PM CDT
First please excuse any misspelled words as I did not get to sleep last night until 3:30am and was up at 7am this morning.
I am still steaming over last night...and still very much upset.
Well Jake started a cycle yesterday, and it was not long before we knew the we had to take him in...of course we did get there until 9pm, but still...they check us in and than have us go wait back out in the waiting room...(remember we have been doing this ER trip for the last 15 months, and it is pretty standard protocall for Jake, and NEVER had problems like this.)...a waiting room packed with kids with scrapes, ear infections and stubbed toes...and my kid violentely vomiting...we stood there for 30 mins...and they finally called us back to triage...because of the reconstruction they moved the triage rooms) so I thought they were finally going to take of him...NOPE...they ca comes in and takes his bloodpressure and than tells me that the nurse will be right in....well 40 mins later, still no nurse and now Jake is in so much pain from the vomiting he is not having diearreah at the same time...had to rush him to the bathroom...mean while, realizing how many rooms were open and seeing all the nurses standing around.
Finally go back to the triage room to wait some more...mean while I see people that were in the waiting room with that stubbed toe go back to a room straight from triage...and there is Jake, sitting in the stroller, crying and puking....finally a nurse comes in about 25 mins later and asked if they found us a room...uhhh sorry was I suppose to be finding Jake a room....I said " I have no idea, but this is crazy, my son has been waiting for over 2 hours now", she said, let me go see if I can get him a room...only for her to not return...another 30 mins goes by and a man orderly walks past the room and I hear him say to the nurse..." Has anybody seen that little boy in 7, he does not look good"...the nurse come back trying to get Jake to wake up and look at her...he was a freaken mess....BUT all she does is vitals again...and tells me she will be right back...10 mins later I walk out there and demand someone get Jake a nurse that is going to help him...finally took him back
The fellow came in right away I was shaken I was so bad...not only was Jake so dehydrated, his blood pressure was very low...guess it had been since we got there but no one cared until now.
To make a long story short...it took the nurse another hour before she even accessed his port...by the way, it takes all of 5 mins to access his dam port. When all was said and done, he finally stopped vomiting at 2am....and we got up to the floor at 2:30am...the worst part was that I realized they had forgot about us in the triage room cause the people I saw LEAVING the ER where people that came in AFTER us and this one kid had diaper rash...as I heard the Drs talking to mom...can you beleive that...They let a child with severe CVS sit for almost 3 hours before receiving treatment and took NON urgent pts first.
I know the ER is a place to go when your child is sick...and I can respect that...and I am not saying the stubbed toe and diaper rash and the skinned knee were not urgent...but come on.
I did talk to pts relations today...and thankfully the Drs on the floor and nurses all agreed how Jake was taken of was unacceptable...I am not asking for special treatment, I never do...but I do feel someone needs to know that they left a sick child without treatment for far to long. Not to mention, he is still so dehydrated and still having falling Blood Pressures issues. Needless to say, no one was happy with how Jake's ER care went and thankfully it is not going un-noticed
Well I hardly every complain anymore when it comes to Jake's care, as I have not had to...but this takes the cake by far.
I will update tomorrow...hopefully saying we are going home.
Until Next time
Christine
Monday, October 1, 2007 3:27 PM CDT
Jake's Manometry Results
I actually got the results before the appt today, as Dr N called me (off gaurd) at 7am.
Well he told me that things are actually worse now in his stomach than they were 3.5 years ago when he had the first Manomerty done...of course I am not sure how that is possiable...but Dr N said he compared the two and the first test showed very small movement when food was introduced...and this time there was nothing...not even a flinch of movement...he said that during the whole test the stomach made no contractions and he showed none of the 3 phases that the stomach is suppose to do during the fasting period and during the time he had food in his stomach, so in other words none of the 3 areas in the stomach did a darn thing.
He said his stomach did not even expand to allow the food he ate(which can still happen in someone with bad motilty) and the small amout of g-tube feed that went in (30ml), so he said that is why he vomited during the test. Even after he vomited, there was still no movement in the stomach area at all ( which does also happen in someone with bad motility)
He did say there were slight contractions when the Erthromycin was given, but it only lasted for 10 mins, and it can take up to 2 hours for soild food for to be total broken down and move thru the stomach into the small intestine, so he said that would explain when Jake was on this, he had horriable cramping pain, but it never helped..did not last long in him.
As for his small intestine area...he said that looks the same as it did in the first test...still no contactions either, but the further down the small intestine ( past where the J-tube is) he starts to regain function again, and it was contracting and showing the phases the small intestine is suppose to, so that is great to hear...althought he did not have a probe placed in his J-tube site for the first test, so he is not sure if it has always been like that, or it got better.
I am not really sad by all of this..after all, we knew he had these problems after the first test, but I just really thought things improved some since his functionl vomiting has got better when he does eat some by mouth.
Dr N told me that sometimes(not in our case) people do not even realize they have motilty problems, cause they have no problems, such a vomiting, belly pain, diearrah and so on...he said he has done this tests on kids that have chronic vomiting and GI issues and the test comes back normal...so really he can not say why this is. In our case, he said it is a big plus that Jake even wants to take things by mouth ( even before the whole CVS started and he took food away himself for a months), but he said there is no reason to g-tube feed him....since his stomach is non functional, g-tube feeds are something that Jake will probably never go to.
So we went for appt with Dr B...we talked more about it...he too thought things were going to look better, and felt bad cause he was hoping that he did not get me in the mind set that things would look better...but I had that mindset myself...just made me feel better nowing that he agreed...so he told me after with talking to Dr N this morning too, that Jake needs to stay on the pump...so we can not have more time off it... that is what really makes me sad about all of this, I was really hoping for Jake's sake this would be able to happen.
He and Dr N both think that along with all of Jake's vomiting with these cycles that he is having intestinal bile reflux that is causing the stomach irraration and reddness...they theroy behind that is his intestine is moving...but his stomach is not...he said it can be a normal process for "some" bile to come up into the stomach, but normally never causes problems cause the stomach is moving the food around, but in Jake, it goes up there and than sits there. Neither one wanted to put Jake back on reflux meds just at this point since he is not complaining about pain or anything ( when he is not sick) and I happy with that as well.
On the weight side of things....he is 39.4 inches tall and weighted 37.8 pounds....he really has not gained since May....so this was another reason why he can not come of the pump. He did say if we can increase the pump back up to 75 and he starts to gain...we may be able to give him some time off....but in reality he can not eat enough calories in a day by mouth to be off the pump for more than 4 hours, and what he eats by mouth is really just for enjoyment....ahhh that just sucks.
So that was pretty much our appt....we are glad we had this tested repeated...at least there is no more guessing when Jake maybe able to come off the tube.
I am very happy with how Jake has dealt with all of this...he wants to eat, he does not really complain at all (except for a loud pump in school..) he still does and wants to do all the things the other kids his age do and for that, his CVS cycles are farther apart and the topamax seems to be helping with that, and the hospital stay is only overnight now...so I am very happy and greateful for where we are with Jake right now..we will take the little bit of bad with alot of good we have.
Until Next Time
Christine
Wednesday, September 26, 2007 10:05 AM CDT
Here is the update on Jake's Manometry Test
Tuesday night at 9:30pm
all went well today with the manometry placement today...He placed probes in in g-tube and j-tube...so this should be interesting.
I was kinda of shocked when he came out and said everything looked great except his stomach did not look good...his stomach is really red and alot information...he say two spots in his stomach that look like the start of ulcers... Was not expecting that...so we will talk more with Dr B about that. Dr Nurko did say that it is most likely due to all the vomiting he has had over the last year.
So that is pretty much a quick update..They will be in a 6am for an x-ray and than start the test....so hopefully this will bring so good news and some changes as well.
I also got kuddos from Dr N today saying Jake's G-tube stoma/site is the best he has seen in a long time...He said he took a picture of it and is going to show his pts what a good stoma should look like...LOL ....I said "why yes I am proud of it myself as well...
Wed at 7:30am
Test was started at 6:30 this morning...and he has a total of 16 probes...The lines look very similar to what they did three years ago...but I am thinking postive...If I can just feed this kid...LOL He will be eating at 9:45 by mouth...and they over the course of the day, he is going to due G-tube feeds and J-tube feeds...but my concern is what happens with his stomach when he eats food by mouth.
I know Dr N can not say for sure, but for those of you that know me, I will get out of him if things look good...he can scan back thru the test, which he has already done once this morning...so in the next hour...things will start moving along.
For now...I have to hand over my lap top to Jakers...it is either that or the whole floor gets to hear " I WANT FOOD"...lol
I will update again later.
Think POSITIVE!!
Wed at 11:00am
Another quick update....He was able to eat by mouth...and than ran both the g-tube at 100 and the J-tube at 90...and after 30 mins started puking, so Dr N stopped everything...He was hopping that Jake would be able to tolerate more than that, but I look at it as, If that was me being pump with a g and a J and eat food by mout..I too would be puking...he just looked at me and said "well"...now x-ray is coming up to make sure he did not move the probes with the vomiting...and he is leaking out of his j-stoma as well...not good he said....ehhhh...so at 12:45, they will do the Eythromicycin, and last time he had that during test, he was very uncomfortable...I hope this time is not like that...than he will give the intestinal med...and should be over by 4pm...just in time for rush hour traffic.
I will say that Jake is one hell of a trooper...even when he was getting ready to puke, he did not cry...and when Dr N said he was sorry that he was sick, he looked at him and said " that is ok, I am use to this"...
Well that is it for now...I will update at least one more time today.
Still thinking POSITIVE..
Wed at 4:50pm
Dr N stopped the test at 4pm, and took out both probes and Jake placed both his buttons back in for Dr N.. He had a meeting from 4-5pm, so I just told him that I know it is kinda of short notice, but we have an appt with Dr B on Monday...and I did not know if he would have the results for Dr B by than and I did not know if I needed to cancel that appt...he said that he was leaving next Tuesday for a week and wanted to have it read before he left...so he said keep your appt with Dr B on Monday and I will have the results for you... So fingers crossed he really comes thru and has it read before he leaves...I told him that depending on the test, we are going to make some changes in his care plan.
So we are just waiting for the nurse to write the discharge papers and we are outta here...I can't wait to shower, and lay in bed and watch some good TV tonight...Thank you and still thinking POSITIVE. Will update Monday night
Until Next time
Christine
Friday, September 7, 2007 7:40 PM CDT
Sorry it has been a while since I last posted...but that is a good thing cause things have been well...Hannah and Jake are in school and loving it...of course I am too.
Jake is a trooper, goes to school everyday with his pump on, and never complains...even bought lunch at school for the first time...how much of it he really ate...well...I think it was more of going thru the lunch line and paying the lady money is what he wanted to do...lol
He loves his teacher, and his favorite class is gym.
Hannah has a great class and teacher as well, she is just so happy to be back at school with her friends...she is my little social butterfly...she sure takes after her mom..:)
On the medical side of things, we are just trucking along...we go back Sept 25th for the manomtery testing, and will be there for a couple of days...we are hoping for some good results, and to see a improvement on this test since it was first done almost 3 years ago...and it if things look better, maybe we can reduce the time he is on the pump...I know he would love to just get feeds at night, and be backpack free during the day...so we sure have our fingers crossed for good news.
I will be updating when we are inpt on his site here...so please check back than.
I hope all of Jake's friends ( and moms) are happy to be back to school as well...I also wanted to say a very special congrats to Jake's buddy Michael on having his wish from "Make a Wish" granted...You so deserve it buddy...and can't wait to hear all about when you come home...remember take TONS of pictures. We think of you often!!!
Until Next Time
Christine
Wednesday, August 22, 2007 11:25 AM CDT
Eight weeks between Jake's last cycle... I will take it...He started getting sick with a cycle on Monday and yesterday was admitted to Children's...BUT instead of being bummed we are here, I am happy we made it 8 weeks...the longest was 7 weeks...so we are happy.
Just thought I would share some good news...ohh and it looks like we are going to be able to go home night if his feeds go as planned.
Saturday, August 18, 2007 10:27 AM CDT
I added NEW pictures of Jake and Hannah in the photos section, I did not realize how old the other pictures were in there...LOL
Well we had a wonderful time in the Hamptons last week...the weather was beautiful and kids had a blast with all the other kids and of course the beach.
I did get a call on Monday from Jake's neuro saying the spine of his MRI was normal...YEAH!!! I knew it was going to be, but it made the rest our trip stress free by hearing that. Of course we need to still figure out where the leg pains are coming from and the urine problems...but as long as I know the spine is good..than the rest will all fall into place over time I am sure.
As of right now, the only big thing coming up for Jake is the motilty test that will be repeated at the end of Sept...I have a great feeling that we will see some improvement...it has been 4 years since it was first done...so I have high hopes. I also hope the results will give us a new medical plan for Jake. I would love to be able to cut back on Jake's feeds and try to get him eating more by mouth...and be able to still gain, but we will wait and see what the test says.
I can not get over the fact that summer is almost over...wow, I guess when you are busy like we have been, time flys by....the kids go back to school on Tues Sept 4th...I am so excitied...the kids are too.
Well that is pretty much it
Thanks for checking on Jakers!!
Christine
Saturday, August 11, 2007 6:38 PM CDT
This will be just a quick update as I do not know any information as of yet. Jake had his MRI of the spine done yesterday....The scan took about an hour and they were able to just do sedation. He slept most of the day yesterday and was back to his normal self by late afternoon.
His neuro was not at the hospital yesterday, so he was not able to read it, and I did leave a message for Dr B ( his GI) as well, but did not hear back from him yesterday...as of 2:30pm, the scan still was not read yet...so my guess is that Dr B checked but there was nothing there yet...so now I have to wait.
We are leaving tomorrow to go down to a friends beach house in the Hampton's, in NY until Wed...I am very excited cause there will be a bunch of us girls with our kids...so we will have a great time...and my kids are excited about the ferry ride over and than the beach.
I hope to hear something from one of the Drs by Monday or when I get home...I am sure all will be fine with the MRI, but I still won't feel 100% positive until I hear if from the Drs.
Anyway, soon as I hear something and get home, I will post that all looks good!!!
Thanks for continuing to think of Jakers!!
Christine
Saturday, July 28, 2007 9:09 AM CDT
I am sorry that I did not update our trip sooner...but no sooner did we get home, we had appts almost everyday...and I figured I would just wait until the week was over and than update everything.
Disney..WOW...we had a WONDERFUL time....there was about 15 of us...it was hot...but Disney treated Jake great. They gave us a special pass that allowed us to go right on the ride, we did not have to wait in any lines...which was great cause all of the rides were at least an hour long...and there was no way Jake would have made it that long in the heat. We also were able to use his stroller as a wheelchair, and that worked out great too, cause he never got out of the stroller...it was that hot...I would say at least 114 with the humidity and all. He was a trooper and kept his pump on...he did not eat a thing on the trip...but at least he did not get sick.
We did have one day where I think the heat just finally got to him and he had some diarrhea and belly pain, but we took him on a ride ( journey into the imagination) and he cooled down to where he started to feel much better.
We also we went to Universal Studios and Islands of Adventure...and a wonderful dear friend of mine that lives in FL was able to help Jake get a pass ( just like the one he got for the Disney Parks)...they were not as accommodating to help kids with medical issues as Disney was...but we got the pass ( Thank you again Faith) and Jake was able to go on just every ride that he was tall enough for.
We have been home a week now, and of course it is all Jake and Hannah talk about...we went to our appt to see GI the other day and Jake was dressed head to toe in his Disney Mickey ears, his badges he got for the rides....it was funny. I am going to see if I can get a slide show of pictures posted on the site...but please check back for some pictures.
On to his medical stuff...right before we left on that Friday, I got the call from Dr B that he is going to have the manometry test repeated for Sept 25th and 26th...this is the test that will tell us if there has been any change in his GI tract...Dr B feels the same as I do as there might be some improvement, but want to do this test before doing anything drastic with his feeds. He also goes in Aug 10th for an MRI of the spine...this is because of the sudden leg pain, having peeing accidents without even knowing it, and he does not have any reflex's below either knee...we went to see the Urology yesterday for the first time..he had an x-ray and a ultrasound done...Kidneys look fine...no problems there, but they found him to be totally impacted with stool, this is not Jake...he also had two bouts of diarrhea before we left yesterday too...but I will wait to see what Dr B says on that, cause after all it is a urologist reading the x-ray...not a GI...so my guess is that Dr B will say it looks fine he is not concerned.
Than the ultrasound of his bladder showed to have a large amount of what he called, debree settled on the bottom of the bladder...of course none of that made any sense to me, so he explained it to me as you have a glass of water and then you dump sand in the glass, the sand settles at the bottom of the glass...and that is what he said whatever was in Jake's bladder, this is what it was doing and it should not be there.
Without skipping a beat, he wanted to do this test called a Urodynmatics test...which I said no right off the bat...he looked at me kinda odd...I said I am sorry...but I am not sure why we are doing all this stuff to begin with...Neuro sent us to come here...but I have chalked up his peeing stuff to being 6.5 years old and being to busy to go pee...his diarrhea stuff, well he is not on a med and that happened soon as the Zelnorm was completely stopped...as the leg pain..that is the only thing that I wanted help with...and the next thing I know we are seeing a Urologist. That is when the Dr told me that he is presenting clear signs of something called a tethered cord...I was shocked...cause I know a little about that, and from what I know, Jake was not a child that ever presented with symptoms of a tethered cord....He explained more about the testing, and the tethered cord to me..I did tell him I want to wait until after the MRI is done before we agree to any other testing on Jake. And Dr B told me if they wanted to start doing more testing, to call him first...which I did on the way home yesterday...he was already gone so I will wait until next week for him to call me back.
So that is pretty much all of it in a nutshell....so for now, I am going to wait to talk to Dr B next week, he can go over the ultrasound and x-ray and give me his thoughts...and than once the MRI is done than we come to a next step depending on what that shows.
So if you could please keep Jake in thoughts during this time, we would greatly appreciate it.
Again sorry for not updating sooner.
Christine
Wednesday, July 11, 2007 5:40 PM CDT
Well...before I forget and things start to really get busy...We are FINALLY off to DISNEY WORLD on Saturday...YEAH!!!!
Hannah and Jake are sooo excitied...ok I am too, but I can not believe that the trip is finally here...it has been a long year for Jakers...and going to Disney now more than ever is going to make Jake's face look like he is in shock the first time he see's the castle, and the Haunted Mansion....ok Tower of Terror too, and Space Mt...yes the list goes on.
I hope you all don't mind all the pictures I will post when we get home.
On the medical side of things, we have all our appt set for when we get home, and the MRI of his spine will be done on Aug 10th...but for the next week, we are not going to think about any of that stuff...Cause here we come Disney World!!
Saturday, July 7, 2007 8:52 AM CDT
Please bear with me as I am so tired...between being in the hospital ( I know it was only overnight) our big party on the 4th, and than our trip back to CHB today for Neuro/CVS appt, I am beat, so I will just give the short of it.
Dr T is happy ( as we are too) that his cycles are every month now...that he is maintaining his weight ( 37lbs), but because of the leg pain we are dealing with, and the bladder/ dierreah issues, that have been kind of new in the last 5 months, he wants Jake to have an MRI of the spine, and now we need to go see Urologly (you all know my feeling on adding news drs to the mix)...he thinks all will come back fine...but he says because it has be documented while being inpt, he has to move forward with the testing. If all is fine with MRI, which he thinks it will be, we may need to decrease the Topamax...but with that comes the risk of the cycles returning more frequent...he said Topamax should not cause these leg issues and Jake would be his first CVS pt if in fact this is the case.
Unfortunally, we have run out of meds for the preventitive of CVS if we have to remove the Topamax...he said there are two that are kind of new, and have not been used on any of his/Dr B CVS ( the two work together....Neuro is in charge of the meds for the CVS, but because it is a brain/gut issues, GI has to be involved, even thought CVS has nothing to do with Motilty) and it "may" be an opition for Jake, but most of his pts are on either Depakote or Topamax and respond well, which Jake has been too.
So that is where we stand right now...kind of in limbo...but for now, going to put all this behind us so we can focus on our Disney trip next week.
Dr B did call me tonight and told me he agrees with Dr T on the MRI, and he is working on the Thorazine so we can have it with us for Disney just in case, he also gave me his personal pager just in case, since he will be on vacation as well that week...but he said, I am sure you will be have a blast on trip, that I won't hear from you...LOL
He did say that he did speak with Dr Fleisher and Dr Li the other day regarding on these whacky blood work that is coming back when he is sick and they reasured him that it seems to be very common in their CVS pts when they are sick in a cycle, and normal with they are not in a cycle...and neither have heard of the leg pain issues with any of their CVS pts
I hope this is not to cofussing, I am happy cause Both Dr B and Dr T have really made a huge difference Jake regarding his CVS, but not all that happy that more testing needs to be done.
I will update when I hear from MRI...of course they called me today about 1. 5 hours after we left...we were still on our way home...LOL
Until Next time
Christine
Friday, June 29, 2007 7:18 AM CDT
Just adding a quick update at 4:17pm
We are still here, but will be leaving tonight...YEAH
Dr B called our room this am and he said that they have him running all over the place, but he was going to come up to see me as he has spoken more to Dr N regarding Jake's motilty issues( th is what we talked about in lenght last month when Jake was admitted)....he just came up before he grabbed lunch and said, they spoke in lenght, and Dr N has agreed to repeat the Manometery, as Dr N said he did not feel doing it was going to change anything, Dr B said he sided with my thoughts and veiws when it came to starting the g-tube feeds back up and thought doing such a drastic change such as this with Jake, repeating the test might be a good thing to do since his first Man test 3.5 years ago was so bad, and at that same time, Dr N wanted to take food by mouth away from Jake cause of the results.
Of course this is something that I am happy and not happy with doing the test again....mixed feelings I guess, but even Dr B said considering all Jake has gone thru this last year, repeating the Man test, regardless of how awful of a test it is, he has been thru far worse...and would hate to do something like g-tube feeds without having the information to back it up...so I am happy with that. And Dr B and Dr N also talked more about the proplusid and Dr N said that Janessen would most likely not approve Jake for the proplusid again due to this last year and more so the CVS..even though CVS is not a motilty issue, there are still to many unknown issues that go with CVS,( the study here in the us is very strick on what they will approve and do not approve) and cause of the severity of the vomiting he is having, (and it is not functional vomiting, like he had last time when he was approved), and being hospitalized for fluids, they will deny him, so it really would be a waste of time to start the process over again, but Dr N did say depending on the Man test and the results, he may be able to go back to Janssen and show them that he really needs this med, regardless of the CVS...but he could not say that would work 100 .but it is something we can disscuss if need be.
Dr B said he is going to try to make it back up here before we leave or call me back...to see if I had any questions...he said he wants to try to save us a trip on Monday so we do not have to come back than.
Always and adventure here at Children's...LOL
Thanks for thinking of Jakers
Update at 7:18 am
Guess better now than in 2 weeks when we leave for Disney( if I am looking at the postive side of this right now)...Jake started to get a cycle early yesterday (well actually the daily vomiting started on Tuesday)...so we came in yesterday afternoon to the ER...things went as always in the ER, a couple of blood work issues...am I surprised...nope...this time they drew the ammiona levels again cause Dr B wanted to check them, and they were back up again, 125, the normal is 60-90 here at Children's...but I told them that is normal for him, his sugars were fine, remember last time they were 425...but his sodium was low.., nothing big, they just had to give him different IV fluid...but I knew something would come back off...that is just how Jakers works.....they got us up on the floor pretty quick...., it was nice to have one of his Jake's primary nurses cause she got Jake a private room...
He is awake now, tummy is a little sore he says, and he is still kinda of "blind", I say blurry..the Thorazine does this to him...The resident came in last night and we had him write all the orders for everything, so we can move the process along today if he starts to do better...we are waiting till 9am, and we will start the pediltye thru the J-tube and go from there...hopefully by the time the GI comes around, I can report he is doing well with the feeds.
I hope to see Dr B today...but if we do leave today, than I most likely won't....but we have an appt with him on Monday anyway, and we see Dr T from Neuro on Friday...
So that is that...I am sorry I did not do any updates sooner, but life took over and we have been having a blast with swimming, going to the beach and getting ready for DISNEY WORLD....YEAH...Jake is so excitied that everyday he asks "Are you going today"...LOL
I hope we can be out of here by later today, but we will see how Jake does. Thanks for always checking on him.
Until Next Time
Christine
Tuesday, June 5, 2007 7:53 AM CDT
I am sorry I did not update this sooner, but Jake did get another cycle last week and ended up in Children's....we did have a scare with very high sugars and something that starts with KEY in his urine, and all they could tell me was diabetes...not something that you want to hear at 11:30 at night...they did change his IV fluid to fluid that had no sugar in it at all...and his sugars went down over the course of the night.
Everything else was pretty much standard for Jake...we tried to get neruo to help us his leg pains he has been having, but the neuro resident who came in really did not offer anything to us and as it always goes...no one communicated with our neuro who set the whole thing up...so it was a waste of everyone's time.
We are going to talk more on having the Manomterey done sometime this fall, as Dr B and myself were able to talk in length regarding the GES scan he had done and the fact that there is really no way he would be approved to go back on proplusid with the history of cyclic vomiting in this last year. And I told Dr B that I am really nervous of starting G-tube feeds for fear of something "bad" happening again like it did last time we changed stuff...I said if the Manomterey test comes back showing improvement, than I will be more than willing to try it...although when I asked him if he saw Jake coming off tube feeds anytime soon, he said, sorry but no.
So I will know a little more when we see him in July before our Disney trip. On a side note, one of the local news channels, WBZ Channel 4, was at the hospital on Thursday to tape kids to help raise money for Children's, and Jake made a video cut....he will not be talking, but my hope is that they will say his name...and YES he was wearing his Red Sox shirt...LOL...but it will be running all day this Thursday, June 7th as it is "Day of Giving" and they also told me that there will be a video link in their website that I will post on Thursday if he does in fact make the segment...which they told me he would...but you never know.
Again, sorry the update was a little late...but he is home and doing much better...just hoping to get thru the next two weeks of this school year...YEAH!!!
Tuesday, May 22, 2007 3:30 PM CDT
Sorry this update is a little late...things have been really busy and crazy around here.
Dr B called me Friday afternoon with Jake's GES results...and he said they looked good for Jake...40%-70% is WNL...Jake's were 34% in the hour...
I was stunned....Happy of course, but stunned cause the Manometery showed no movement in his stomach...of course this was 3 years ago...and Dr B said that over time, kids can improve...and Dr N and Dr R had told me the same thing as well...but I did not think it would be so soon...So right now, we are not going to do anything with the proplusid...and he did ask how I feel about trying g-tube feeds again...and of course I am all for it, but I do have my concerns with it...he did say he wants to do it inpt so if Jake starts to show signs of dumping and he is vomiting and retching really bad, he will be there to test his blood sugars. Of course he knows my feeling about being inpt...and I told him that if he really wants to do this, than I will, but it can not be until sometime in Aug...We have to much planned this summer with our Disney trip...I CAN NOT risk anything else going wrong.
We do see him in July...and of course will talk more about it than....he seems to think that it may help with his wanting to eat by mouth...he says something being feed in the stomach can kick starts some hormones that are turned off when the stomach is not being used.
So that is where things stand right now....while I am very happy about the scan results, I am still nervous about going to g-tube feeds as he has not been g-tube feed in over three years...I am just sooooooo afarid of something else popping up...it seems like everytime we do a somewhat of a drastic change in his care plan, something else goes wrong....
But it is not something we need to rush into at this point...I still need to work on the weight.
Just wanted to share with you all.
Tuesday, May 1, 2007 9:48 PM CDT
But for the most part today went really well...it is hard to have a bad appt with Dr B...as you know I just love that man to death.
Good news is Jake gained 1/2 of pound...which is good, but he still very skinny and even with the rate increase these last two months, he should gained more...but because of the zelnorm...he is taking that into consideration.
The other GREAT news is that Dr B is FINALLY willing to talk to our nurse at our HHC and look into having IV fluids and thorazine giving at home.
Now I know it is not set in stone as he said I am not saying yes, but I am saying I also not saying no, and if I can talk to your HHC nurse and I feel comfortable after speaking with him, than I will give the ok.
Of course I already called the HHC nurse who has been dealing with Jake and she is so happy he is willing to think about this, and since 70 f their IV kids are the "Jimmy Fund Kids", he has to feel some comfort in that. So I will call her by next Monday if I do not hear from her sooner to what his thought process is on the whole thing. We also saw our Social Worker before the appt and I told her what I was going to ask him, and she really gave me the confidence to ask and not feel as though I was being pushy...which I did not after we talked about it.
Now on the bad news or not so good news....His motility...since Jake has been on every med from propluisd, to Domperidone as the two top ones...with the Erthro and Periaction as the lower ones...we really are not left with any opitions....so it looks like the manomtery test will be repeated this summer rather than next summer... We both agreed putting Jake back on meds he has been on in the past and doing the waiting game is not a good idea since his CVS has been doing great, but it can also cause more problems than good...and since his weight is a factor...we really need to address it. He is going to talk to Dr N and Dr R since the know Jake about any other ideas they might have...but knowing Dr N, he likes meds meds and more meds...I told Dr B that I really refuse to do that with Jake, I am trying to get him off alot of meds that Dr N had put him for the last couple of years...I would rather do the manomtery with Dr N and see if there has been any change. Lord knows it is far from a great test to put ANYONE thru, but in Jake's case were it showed severe motility, and where it was done 3.5 years ago...and they did tells us that as Jake got older, things can get better....I would rather just get it done.
We go back and see him the first week in July and he will put a plan together for Jake so we can take it to Disney in case something were to happen. So unless he calls before that, I will know sometime in July if and when the manomtery will happen.
So there is more good than bad of course, and I really did have a feeling that Dr B was going to push this manomtery up to now when they pulled the zelnorm. He did tell us that he spoke with Dr N breifly about proplusid and what the chances are of him being able to go back on it, and he said no way, Janssen would deny soon as they saw CVS as a DX...and because Jake is not using the Zelnorm for what it is intended for ( IBS, constapation) he said he would not be able to go into their protocoll either....as a matter of fact, he said it sounds like they will be having just adults in the protocall and only children that are in line for things such as GI/Small intestine and lg intestinal transplant...not even kids that suffer from severe constipation...but he did say that Dr N would be the one to know more...he is just telling me what was sent to them by the makers of Zelnorm...I hope that does change.
Well that is that...OHHHH and Jake also had his first blood draw from his arm today... since the port was placed in Dec...it took three tries and if the 4th did not work, than we were not going to keep trying, but the 4th was a charm....so that saved us from having to sit in the ER for 6 hours for a 5 min access and blood draw from his port.
Until Next Time
Christine
Tuesday, May 1, 2007 9:48 PM CDT
Just a quick update, after 7 great weeks, Jake started to cycle yesterday. Today he was admitted for fluids and so far sleeping and finally stopped vomiting. The plan is to go home tomorrow afternoon...and Monday work on talking to the GI about what we can do about IV fluids given at home in the future if need be.
Jake also has a eye appt on Friday per neuro to check the pressure behind his eyes cause of the increase of headaches, and than Monday to see GI...I will update on both appts.
Thanks for thinking of Jake.
Christine
Monday, April 16, 2007 8:51 AM CDT
Good news to report. Today marks a whole month since Jake got out of the hospital from his last cycle....so this means he has gone 4 weeks 3 days in between cycles. Amazing news...YEAH!!!
We also have another milestone today as well....we actually made it long enough to have the nurse come to the house today and flush his port...Ususally we end up in the hospital, so we have never had a nurse come to the house to flush his line.
He is however suffering from more headaches...they seem to come more often and are much more stronger...so I just hope this is not a sign that he is developing migraines....I will be putting a call into neuro today and see if he has any thoughts....Jake's hair is starting to fall out( not alot, but enough to cover the bath when he gets out)...and we think it is a side effect of the topamax...they say it is a rare one...so I am wondering if the headaches have something to do with the topamax.
I will update as I know more...otherwise my next update will be after our GI appt in May
Until Next Time
Christine
Tuesday, April 10, 2007 9:51 AM CDT
Well not to much to update...but some of you may have heard that the FDA has pulled a med called Zelnrom off the market about a week and a half ago...and yep, that is a med that Jake takes for his motility vomiting...Right now we are just weaning him from the med to once a day, and than we will see what we are going to next as a med...We have not noticed an increase in vomiting...but we are also trying to work up his feeds too, as his weight is still lacking due to the nasty stomach flu he got back in Nov....Right now Jake is three weeks since his last cycle, we have thorazine here at home if he starts to get sick again...and we have a nurse coming to the house next week to flush his line...that is if we either do not go into a cycle, or go into a cycle and are able to keep him home without having to get IV fluids. If he gets sick and needs to go back to the hospital, than we will not have a nurse come out, we have never made it a month...but I still have hope.
So that is really all there is to update...Kids are on school vacation next week...so hopefully we will be able to arrange some play dates and hopefully the weather will start to warm up here too.
Thanks for reading
Christine
Friday, March 30, 2007 7:17 AM CDT
Can I just tell you how much I loved Dr Torres....I can not believe how lucky we have become...we go from having drs that could care less, or at least have no interest in CVS and now we have an amazing GI and an amazing neuro...
We talked about Jake's first EEG, he showed Kev and I the report that was written up...it said "it was abnormal, and there was spikes thru the 4th and 5th HZ"...that is all I could remember from it, as we were reading it off his computer. We asked alot of questions and he was upfront with us, which is good...at this point, he is fine with us trying to keep Jake at home and give him the Thorazine when he has the next cycle...he feels that right now repeating the EEG is not needed. He did say depending on the day and time of day, if we have to come in cause we can't keep him hydrated, than to call him and will try to set the EEG up again. He said his techs to do not like to get EEG set up in the ER, but he said if this is what needs to happen, he said he would make sure it did.
But for now, we are really going to focus on home treatment...Dr T had a HUGE smile on his face when I told that Dr B gave us the Throazine to do at home....and than he gave Jake a big hug, it is such a good feeling to see your child's Drs so happy.
So really nothing major, we got out of having any labs drawn, his dose level is really good right now..and he said if we has two more cycles within the next three months than he will increase the morning dose to 75 as well. He also spent sometime talking to Kev about CVS as a whole...it was kinda neat cause sometimes when we talk, he gets very confused, so he walked out of there feeling really good about Jake's care...which makes our life at home alot easier.
Ohh...we talked about his MRI that was normal, but he turns to me and says' Sinius show mild to moderate thicking...he said you can talk to you ped and let him know, some drs like kids on a round of antibotics"...I said Jake has never had any sinus issues...he started laughing...and I said there is a prime example of "if you look hard enough you will find something"... He said...true, true. Who would have thought sinus stuff would come up on someone who has never had a sinus infection.
So that was it in a nutshell...right now we don't see Dr B until May...and Dr T in July...so right now, goal is to keep Jake home!!
Friday, March 23, 2007 3:40 PM CDT
YEAH...after a couple of days of thinking we were never going to get the Thorazine, finally with alot of work and help from Dr B, the pharamcy was able to get the med in pill form for us. Dr B was hoping to get it in IV form, so it would be in liquid form and easy to give thru his J-tube, but they could not get it....so we do have the pills, and I feel much better. I just hope that if Jake get's sick again than this will work at home.
We do see Neuro again next Thrusday, so we will talk a little bit more on the EEG and see what he wants to do with that...but for now, we are happy with how things are going and hoping that this new change in his care plan will infact work to keep Jake home more often.
Thanks for always thinking of Jakers!!
I will update after next Thrusday.
Wednesday, March 21, 2007 12:01 AM CDT
BIG NEWS BIG NEWS BIG NEWS BIG NEWS BIG NEWS BIG NEWS
Ok can you tell this is BIG NEWS!!!
First I want to say Happy 8th Birthday my sweet baby girl Hannah...today my princess is 8 years old...Happy Birthday pumpkin!!
Here is the Big News!!!
It has been a little while since we have seen Dr B outside of being inpt, so this was a first time for us in a couple of months...we sat and talked about alot of things for over an hour.
Just some things we made changes it...we need to slowly increase his pump rate up to 65 in the next 4 weeks...he wants to go slow...his weight is down to 38 pounds and he has been just sitting there, so he gave us the ok to work up slowly, but right now no one is concerned with his weight, they just don't want to get it to where it becomes a problem.
We can decrease his prilosec from 2x's a day to once a day, hopefully we will be off that within the next couple of months. Carnatine, we will also decrease to once a day from two times a day in two weeks, and than hopefully be off of that in the next of months as well, and the two things to consider in the future is to have Dr N do the manomtery test again, this would be around the summer of 08...that would be 4 years since his last one, which was said to me when he had it done, that they like to repeat in 4 years if problems are still going on. He has hopes that some of Jake's issues will get better as he gets older....so he wants to see, but nothing anytime soon. The other thing is possiable add a supplement call Riboflavin he said he read an article on migraines and Riboflavin is showing to be a an effective supplement in prevention of miragines.
Now for the good NEWS part... Dr B has agreed and feels comfortable in letting us give Jake Thoraize when a cycle starts, at home instead of coming into the hospital... for those of you that do not know, Thorazine is the med that puts Jake into a deep sleep/sedated to where the cycle stops...Dr Fleisher ( the CVS dr in MO that we saw in Dec) has reccommend this in Jake's ER/CVS care plan and since we started doing it back in Dec, it works. Dr B told us that he knows we know when we would need to bring Jake in...the only piece we will be missing by being at home is the IV fluids (taking this new care plan one step at a time, not going to push nursing for home IV access) but because of the J-tube, we can still get some pedilyte into him...and if he is sedated enough, than I can try to slowly increase the J-tube pediltye to make sure he is dehydrated.
We all understand that it may not work, but he is willing to let us give it a try...OMG, I am still in a little shock, and I have been in tears all morning cause I can't believe that we may, we may be able to stop a cycle at home, and not have to go to the hospital...
We pulled up all of his inpt admits in the last 8 months and he has had over 23 admissons...so this is HUGE...HUGE for us... As Dr B said, because CVS is still so unknown, he needed to be able to get a feel for Jake's cycle's inpt....and he said, "I think you have done your time here"... so he feels good letting us try this now.
Of course Dr B had to throw his joke in there, he said "Wow, I need to put this down in my books, this is the first time I have ever written a script for Thorazine".. But than he was telling me that Jake's CVS has really got him to do more research on kids with severe CVS, and he said he has been learning alot from Dr Fleisher, and it is helping him with some of the newer CVS pts that he as been seeing...he also said he was giving a lecture to the round of GI Fellows the other day and said I used Jake in lecture( he did say, "I told them that they would most likely meet him at some point or another in the hospital...but said, maybe not now ", that made me smile from ear to ear...I said "maybe not") and than used another teen boy that has lesser form of CVS, and how important it is to make sure these children are treated with the right meds and right dose...he said the one thing that Dr Fleisher taught him was that the longer the treatment of CVS is put off, the harder is becomes to get the child back on track, or better....CVS is not a life long medical condition( but could last for 20 years if a child gets it)...BUT because there is still so much unknown about it, they really have to go thru these kids with a fine tooth comb....it was good to hear that, not that I wanted Jake to be a "test subject" for other drs for what severe CVS in pedi's looks like...but it is good to know that because of Jake, they are able to try and help those that come in behind him before it gets worse...which can happen, if left unproperly treated.
I just feel like a HUGE weight has been lifted off my shoulders right now...it is a great first step in the right direction, it is not a fix it all, nor can I say that he will not end up in the hospital, but as Dr B put it, this is going to be kinda like an outpt experiment(althought CVS itself is like and experiment)...we have no idea if it is going to work, but we will all cross our fingers and pray it does.
Well that is pretty much it...overall I am just so happy...see I am a firm believer in ALWAYS try to keep positive, even when it seems like the world is crashing around you, when you least expect it, little miracles ( as I call this one) do happen.
Yeah Jakob!!!
Friday, March 16, 2007 7:14 AM CDT
Well MRI was finally done yesterday..and did not go as planned....we agreed to do sedation cause once he saw the MRI he freaked out...but we tried...well I forgot how scarey sedation can "look"...they gave him a med called "Dexam-something"...it took about 6 mins and than he started crying, telling me he did not want to go to sleep, to please help him....Oh it broke my heart, but I kept rocking him and within seconds he was fully out...than the nurse says "I forgot to tell you the med makes them look very pale, but it is normal"....he looked awful...about another 3 mins went by, the nurse and another man was putting the ear plugs in and they were telling me it would take about 20 mins and I go make some phone calls or back to the room, and than come back in like 45 mins...I was just about ready to go when Jake woke up from a dead sleep CRYING... I could just put my hand on him, I could not rub his head or anything...it killed me...of course this made me cry and there was no way I could leave him...so off to the MRI I went with him...the test went, we go back to recovery, and he starts vomiting and gagging ( he has had nothing in his stomach for 2 days and his has been on drainage for two days, so not to much came up)...I was not expecting this at all...well he got out at 4pm, and he is still sleeping as I type this....he can answer me if I ask him if he wants a drink or something, he shakes his head no...so I think I have yet another late night ahead of me cause he will wake up at some point and not sure he will go back to bed so easily....
On a good note, not only was this EEG normal, but the MRI was too, which I already knew...so now we have both metabloic and neuro out of hair... I am VERY happy about this.
We had to stay tonight cause he was still sleeping and they have not restarted his feeds yet...He did great on his feeds last night and are heading home today.
So thank you all for thinking of Jakers.
Wednesday, March 14, 2007 8:53 PM CDT
UGGGHHHHH I hate this hospital wireless...I just did a whole post and when I went to hit send, boom, kicked me out...
Ok I will do the short of it....we are here at Children's, Jake was a direct admit up to 9East, they got the EEG started about an hour later...he did have a couple of vomiting eposides, and it did not show spikes, go figure, but he has had some areas of alot of spikes when he was sitting there watching tv, when they were checking vitals...but nothing when he was vomiting....Tomorrow the MRI still seems to be in place....the GI attending, Dr Fishman told me that they really do not like to have to cancel MRI's...so that was good to hear...his port is drawing slow again....IV pump is beeping when we go to high, as of right now we think we can put off the dye test until tomorrow if we have too...main reason is the EEG...not easy to do with a EEG going....so they are slowing increasing the rate of the fluids, and they think the end of the cath is still bent and pressing against an artery wall, just like last time...so they feel if the increase slow, it was push back enough so we can get him back up to 72
Ammion levels were drawn and it was 104...normal range is 60-80, so it is high, but not high as far as metabloic is concerned...so we are pretty much done with them.
Well he is finally sleeping now, Thank you Throazine.
Will update tomorrow.
Until next time
Christine
Friday, March 9, 2007 8:57 PM CST
I was thinking I was not going to have to do another update until I heard from the Dr sometime next week regarding the EEG results...
We were about to walk out of the door for church and the phone rings, it is Dr T, Jake's neuro dr...looks like Jake's EEG is abnormal..
He told me that he did not see any sezuire activity, but Jake had ALOT of "spikes" during the test...He really did not tell me too much except, and of course I shocked that it came back abnormal and did not expect him to call, so I was not ready for asking any questions.
He told me that the next done Jake gets sick, we need to back to the hospital and the ER needs to notify him and he needs to have an EEG done during that time...even he said this is going to be hard cause as you all know it takes so long to get the electrodes, and to it on a child who is puking is even harder....so right now, we just sit and wait.
I am just sitting here thinking, I can get metabloic out of the picture, and than just get this EEG and MRI out of the way, and just deal with GI and now we are starting back to square one AGAIN, just in another area.
I will post again when I know more
Thanks again
Christine
Friday, March 9, 2007 11:38 AM CST
It was uneventful to say the least...took longer to put the leads on than it did to do the whole test.
We stayed at my sister's Wed night ( she is about 15 mins from Children's) and we able to keep Jake up until 1am last night, by watching 3 hours of our Disney Trip that we took 4 years ago.. I ended up staying up to about 2:30 cause I got into to watching something, and than set my alarm for 5am instead of 4am...so 5 came, I got up, Jake was mad, did not want to get up, so at 5:30, I finally broke down and played the Disney video again and than he got up...got to the hospital, and as they were putting the leads on, he starts to fall asleep...and I since they only wanted him to sleep for 10 min, he needed to wait....all the leads are on, she takes a couple of pics of him..and started the test....but now Jake can't sleep...so after 15 mins, and using the strobe light, he finally fell alseep....and only for 10 mins cause we had to wake him up...Ohhh he was mad...but got over it quickly when he got to pick out stickers.
So I won't know anything until next week, but I already know it is normal....so now just wait for the MRI that will be done and hopefully we can put all this testing behind us.
Thanks for thinking of Jakers!!
Wednesday, March 7, 2007 6:08 PM CST
So far things have been good with Jake...Tomorrow Jake has an EEG at 8am at Children's...this is a test that I think is something we could have done without, but neuro wants to do it.
We have to keep him up until 12 midnight and than I need to wake him up again around 4am...and keep him awake until we get to the hospital....so we are staying at Katie's ( my sister) in Watertown, as she is only 15 mins from the hospital...hopefully I will be able to keep him awake for the drive in.
Well hope all is well and I wanted to send out a special Happy 6th Birthday to Michael...We hope you had a WONDERFUL day sweetie.
Wednesday, February 28, 2007 8:05 AM CST
It was a long day...a day that we could have had last week if in fact someone on the GI team REALLY called someone from metabolic when we were in pt last week, this could have been resolved he said...but as usual, someone told someone that no one from metabloic was going to see us inpt they were going to wait until we saw them outpt...Dr Harris said after the last labs he drew two weeks ago in the ER, he would have said he was ok with his ammiona levels, as long as he recovered AFTER the IV fluids were given...UHHHH ERRRR. I am very happy cause I never felt this was an issue, or at least an issue that would require any further testing...and now we can stop drawing the ammion and focus on making the hospital stays shorter or even being able to do fluids at home...we would not be able to if we are drawing all these labs.
They still do not know why his ammiona levels are high, but all of his other labs were normal, so they were not impressed that Jake fit any of the areas that they were looking at...so I can finally scratch this off the chart for now, and the next time the inpt GI team say's "We need to consult metabloic", I get to say, NOPE, they cleared us....we did however still have to wait a month to make sure all the depakote is out of his system...and they will retest him again, sick and not sick.
So that is pretty much how the appt went, I just hope it goes on record next time this becomes and issue again.
Saturday, February 24, 2007 9:22 AM CST
I am sorry for not doing an update sooner...it has been rather crazy around here...I still do not have to much information to offer at this point, I am hoping to know more on Tuesday.
Jake was admitted again on Monday for vomiting...this ammiona levels are still going up, but do go back down after being on IV fluids...we also had a scare with his blood pressure being really low...even when awake and sitting up..so we were there for three days this stay...still no more answers, but our GI did tell us that we really need to start looking at this ammiona levels. His GI does not feel that Jake has a Urea Cyclc Defect, but his bloodwork is stating otherwise. He did say that their are milder forms of UCD, but he said this needs to be left up to Dr Harris, the metabolic Dr, and we see him on Tuesday.
So hopefully we will have a plan on what this ammiona is all about, if this is causing his vomiting issues, and if so, what they feel needs to be done, and if not, than why are these levels high.
So I will update on Tuesday night...please keep your fingers crossed that we get SOME answers on Tuesday.
On a side note, Our very good friend, Jill,the child life specicalist up on 9East got Jake 6 tickets for the Burins Hockey game Monday night, so this will be a first for Both Hannah and Jake...it will be a long night, but he is so excitied to go.
Friday, February 9, 2007 8:23 PM CST
What a day...My goodness, what I thought was going to be just a routine follow with the neuro, but I was way off....To back a couple of days...on Wed we had a nurse come to the house and draw the depakote and ammonia levels so we would have them for our appt today with the neuro dr....which was a plus since we did not have to take another day to go to the ER and have these done...so we go this morning for our appt at 9:30am, Dr Torres comes out and says that we need to go to the lab and have the ammonia drawn again...the blood work that we had done on wed showed his ammonia level to be 95...this labs scale was 3-37 for the normal range, that is almost three times higher than it should be...his depakote level was 64...so he was happy about that...BUT the problem with this blood work is that it has to be free flowing, so it needs to be drawn from the port to get an accurate result....and the downside of having a port and needing blood work like this, he needs to go thru the ER...so his GI and Dr Torres talked and they felt that Jake could not leave the hospital with labs being this high...even though he did not look like or present sick because of these levels, it is something that can change in a matter of hours...so off to the ER we went.
It was around 10:30am and NO one was in the ER...they took us back to a room and we got him accessed( still took 2 hours)...thankfully the nurse thought to keep his accessed until the drs ok'd his bloodwork, just in case it did not come back normal...so they drew the blood, we than went over to the food court, and than went back upstairs to see Dr T for the results...he came out to get us and said he was not happy...the blood work came back with Depakote being at 22...WAY to low and his ammonia level being at 119...way to high, especially since he is not sick. So we started getting on the phone with our pharmacy to make sure they were giving us the right med...as we have had problems with the scripts have been writing...from depakote to depacoat, to Valproic Acid...we started to wonder, but the med was right...than he talked to the pharmacists down in the lab and all of Jake's other meds should not be causing this depakote to drop like this, and his depakote levels were not high were they would look and think that maybe the depakote was bring the ammonia levels up, but that is not the case....so he than got on the phone and spoke to the metabolic dr on call and said that he wants them to see Jake down in the ER...cause being on the depakote with levels of the ammonia being high, can be very dangerous for Jake...so it needed to be addressed now...we than go back downstairs to the ER ( which we were never discharged from)
Dr Harris, this is the dr we have our appt with in two weeks in the metabolic clinic...so that was good, it was not only just a resident or a fellow, but it was the actually Dr that we are going to see. So we sat and talked for about his history on this..and after looking at all of his labs in the past they are very concerned, they have been higher than they would have liked them to be...he said there was only one time that his lab was in "normal" range, cause they said they re draws that were done AFTER being on the IV fluids, they felt were not accurate..THANKGOODNESS...FINALLY...a dr that finally told me what the paper they gave me said...lol...and they felt that Jake needed to weaned off the Depakote at this point, and they too felt it was to risky keeping him on it. They ran a couple more blood labs, and pee...they also took some DNA samples from his earlier draw and freeze it for the future if they feel they need to test more. Because he looked so good, we were given the option to be admitted and have them run tests ( they did not say what tests) as I said no, at this point Jake is not sick at this moment, no need admit at this point, and they also felt that his levels were not going to sky rocket if we went home, and it is a Friday...no one was going to do any tests over the weekend unless it was emergent, which Jake is not...so we all agreed that we will wean him off the depakote over the next three weeks, and than we will do our follow up with Dr Harris in the Metabolic clinic in two weeks...I also had my ammonia drawn on the way home as they wanted to see what mine was...he did say that he has had two pts where they also have elevated ammonia levels and they have not found out the reason why...he said that may happen with Jake, but because of the chronic vomiting he has, they really want to get to the bottom of it. They also feel the ammonia levels being high is causing headaches for Jake...and they also think it is the ammonia that is making the vomiting worse...they feel he does still fit the category of CVS, but again this dx is all about process of elimination, which now they are not fully sure everything has been eliminated.
So Dr T and Dr B came down to the ER and we talked more about stopping the depakote and starting him on Topamax, which we will start tomorrow...So after the last bloods were drawn and they de accessed him, we finally were able to go home, at 6pm...so it was a long, very unexpected day to say the least..so just as we thought we were going to put away the Metabolic stuff, now this seems to be on the fore front things now...Dr T, the neuro, also want Jake to have an EEG, which I tried to explain that I did not think was needed as he has never shown any signs of seizures, but both Dr T and Dr H think that we need to make sure we have covered everything...so he is having that on March 8th...at 11am, which is going to be fun, how is he going to be tired and sleepy for this test, they told me I need to keep him up at night and during the morning...lol...this should be fun.
So I think I pretty much covered the whole day...I really do not know what is going to happen next, Dr H says he needs these next two weeks to go over this file and his past labs...and go from there. He did say that if Jake gets sick again and ends up in the ER, that he needs to have ALL of the labs drawn again...again thank goodness for the port, but I feel like we are starting all over again.
I will continue to update as we learn more.
Thursday, February 1, 2007 3:10 PM CST
Sorry I did not update sooner, We got to come home last night....this is our first overnight (1 night stay) ever...so there is another positive thing. It is hard to say if we brought Jake in on Monday( when his cycle started) if we still would have been there the average 2 night stay...but that is beside the point I guess..right.
I will say as much as we have begun to dislike the hospital, it seems like every time we go get a little stress free than the last time...two things that I think have made it this way was one, Dr B, he has really been there for us since he took over Jake's care, and the port
The nurses up on 9 East were in shock when they saw us...since Jake is like clockwork. One of the nurses said to me last night " you know why your here right", I just looked at her and she said "cause Erin(another nurse) was asking about Jake yesterday"...she said they Jinxed us...and here I am at home, telling people "don't bring up the two week mark"...LOL
Tuesday afternoon in the ER Dr B came down to see us before he left as he was leaving for the rest of the week. I was sad when I got Jake's Depakote level ( this is the preventive med for the CVS) and he assured me that it was ok, and he was kind of glad it was on the low side and not the high side, cause he had something to work with still....really if the depakote fails, there is really nothing else...at least nothing else as good at the depakote...except for going to experimental meds, or a med that he says they are starting to use in adults with CVS, but have not been studied in children yet...I really do not want to go down that road.
He said again how happy he was that we put the port-a-cath in ( this is IV line that he has in chest, so no more hard IV fails and blown IVs, which hinders his care during a cycle) and he (we do too) thinks that it has been a huge help in getting Jake on meds and fluids, without any problems...since he has had the port, it literally takes all of 30 mins from the time we walk in to the ER and until he his accessed and hooked up to fluids and meds...it use to take hours before they could even get an IV before...so this port has been a blessing.
Dr B is also a little concerned with his weight...he as lost about a pound in three weeks, and honestly not surprised as we can not get his pump rate up...we think his motility issues are starting up and Dr B said he needs to figure out what our next step might be with a motilty med...he is not sure how much the Zelnorm is working...he is also concerned cause Jake is already on an adult dose of the Zelnorm and is not comfortable adding a 3rd dose in...so we will discuss this in two weeks.
Some more good news with all of this...we now get to have nurses come to house and draw his labs when he needs a level done...this means we need to use the port for this, not what I really wanted to do, we want to use it as little as possible, this is where infection can happen..the more it is accessed, but they need to still drawn this ammonia level, now for the depakote, not any metablolic issues...but the problem is in order to get an accurate result, it needs to be drawn from the port. So we are kind of left with no other options...but we do not have to go to the ER at Children's for this, they home nurses will come here...so next Wed they will come and draw the labs and than on Friday we see Neuro, so hopefully with the increase of the depakote again, we will start to see some good troff levels ( where the med needs to be in order to actually be working).
Another good thing is that Dr B is letting us and his primary nurses on the floor decide on how fast we go back to his feeds...this is what use to keep us in the hospital forever, cause the GI team would start Jake off really slow, and they would give him like 5 hours before they would increase the rate, it took forever...and now, Dr B thinks that we can be in control of that, he says we do it at home, we should be able to do in the hospital, just as long as he is not vomiting. And Dr B has also been using the care plan that Dr Fleisher came up with for Jake...and it has been our miracle plan. So all and all we are feeling things are finally starting to come together...hey it has only taken 7 months, but now we have a plan, short and long term, and a great dr on board....and speaking of Drs...since our last meeting with Dr N about 3 months ago ( Jake's old GI that did not really do anything for Jake when he was sick, except tell us that, we need to just continue coming in and someday Jake will get better, in other words just pushed us off...) we saw him yesterday..he kept coming in and saying Hi, he payed more attention to us yesterday than he ever did as his dr...and than it got weird when Kev came in,than Dr N comes in the room again and out of the blue, asks us if we don't mind, could they do a quick EKG on Jake before we leave....he said Janssen ( the makers of proplusid, that protocol med) wants one now that he is off it...I did start to laugh cause I thought to myself, wow, Jake has been off that med for 7 months now, and just now, he remembers that Jake's need an EKG...the whole thing was really strange...at first I thought how come he did not say anything to me the first three time he was talking to us, and than he sees Kev and myself with the Drs trying to get the heck out of the their, and he all of a sudden remembers that Jake needs this EKG...goodness, I can't imagine where we would be right now if he was still Jake's Dr....I think I would be in the looney bin for sure...but we made him happy and did the EKG.
So that is it for now...Jake went back to school today, and got his birthday crown and ribbon, he was very happy....My next update will be next Friday after we see the Neuro dr...fingers crossed that his levels are at least past 50. Thanks for all the wonderful birthday cards and emails for Jake...you are all so good to him.
Thanks again
Christine
Tuesday, January 30, 2007 7:35 PM CST
Jake started another cycle yesterday and was admitted tonight, HOWEVER we made it three weeks between cyles AND we managed to keep him home thru the night, but this morning, he started vomiting the blood and decided to call Dr B. We got here around 9:30am, they got him accessed within 20 mins, and had him knocked out 15 mins later....Neither Jake or myself have sleep in 48 hours...so it was such a releif when he finally went.
We talked to Dr B before he left, his depakote levels were 44...the same when we left three weeks ago...we will see Neuro tomorrow (as we had a follow up appt with Dr Torres today) and try to figure out what dose they want him at. Dr T wanted Jake at a troff level of 70...so 44 is not even close... He also lost a pound over the last three weeks, but this is due to his motility, not CVS, so he was going to see if we can increase the Zelnorm anymore, he is on an adult dose as of right now, and he is not sure if going higher is going to make a difference or not....they are also going to try and get Jake his MRI tomorrow...that would be nice, that is one less day out of school...but who knows since this is not emergent.
Some positives is we went three weeks, and we managed to keep him home longer, and he has not vomited since this morning, although he has been sleeping most of the day, but still. We are also going to try and restart the pedilyle on the pump tonight too...which I am all for, maybe if he does well, we can be out of here by tomorrow night. And we have the master suite on 9 East.
But I still do not like it here, don't want to be here, regardless how many times we end up here.
Postive thoughts that we can maybe make it home tomorrow.
Sunday, January 28, 2007 8:03 AM CST
HAPPY BIRTHDAY JAKOB!!!
Today Jake is 6 years old...my goodness where has the time gone. And 6 years ago, he was born on a Sunday...at that time it happen to fall on Superbowl Sunday...The pats were not in the game, so I can not even tell you who played...Kevin could..;) He was born during the 4th quarter of the game at 7:42pm MT time.
Also some good news to add..tomorrow will be the THREE week mark since Jake had his last cycle and was in the hospital..We are so happy and really starting to feel the new dose increase maybe starting to help...all along the goal is to get the cycles further and further apart...and after 7 long months, it looks like this may be starting to happen. He has an appt with Neuro on Tuesday...he will also have his blood taken so they can check the med level. We also have the MRI for March 13th...but thankfully they are not going to put him under, but they will give him some sedation to make him sleepy.
Thanks to everyone who has been there for us, but more so Jake during these last 7 months. Not sure we could have done it if it was not for all the wonderful words of encouragement, and support.
Thank you!!
Christine
Friday, January 19, 2007 2:43 PM CST
Nothing really to report here...Jake has been enjoying his time at school and we had no drs appt this week, so it has been quite here!!
We are all looking forward to the game on Sunday...Fingers crossed the Pats are heading to yet another Superbowl!!
Ohh and I almost forgot my sweet boy's birthday is coming up...6 years old on the 28th..wow...has time gone by.
Take Care,
Christine
Wednesday, January 10, 2007 9:38 PM CST
Yeah!!! We are home...and actually we able to get a early admission...before 12noon.
Jake did well last night with his feeds, and woke up a little "off" but Dr B felt that he was stable enough to go home. Of course he sleep most of the afternoon, but soon as Hannah got off the bus, he was back in action, playing, singing, and getting on Hannah's nerves.
I thank you all for your emails...it was good to read, and since I have a laptop, this time around was nice...less tv and a little more computer fun for Jake.
Good to be home and finally be able to get some sleep...two nights of no sleep..We are beat.
Until Next Time
Christine
Tuesday, January 9, 2007 9:27 AM CST
Well here we are, 18 days to when Jake's last cycle started...so we did have a improvement, he went 4 days past his 2 week mark...so that is good. We got to the ER last nigh, they got Jake right back as always and were able to get access right away...the port is a wonderful thing ( and that is all I keep hearing everyone say here in the hospital, including Dr B. Some of his labs, his depakote level and ammonia levels were off...they redrew the ammonia at 3am and it was not normal...go figure he was on hours of IV fluids...it needs to be taken while he is sick....Uhh I have some Drs saying 125 is borderline as to be concerned, and than I have some saying it is too high, but not to high to be treated with meds...and than I have Dr B saying, It was normal the second time it was drawn, so it is normal...no need to worry....they drew this from his port, the place to draw the blood and now it is showing high, and depakote is showing low...OMG.
I think I am going to be putting a call into Dr Fleisher today and see what his thought is on the ammonia levels.
We had a Nuero appt today to begin with at 12 noon, so we are just going to walk over there for the appt...we are hoping to get some answers to some of our questions. I think we are going to start pedilyte thru his pump this afternoon, and hopefully be able to tolerate it...he is feeling better, but not all that better, he is having stomach pain, and says he wants to throw up, but is doing well keeping it down...yesterday really wiped him out...so that is not helping either.
Well the plan is be going home tomorrow if today goes as planned...so fingers crossed.
Sunday, December 31, 2006 7:31 AM CST
Happy New year everyone!!
I know it has been quite sometime since my last update...usually that means no news is good news, and in this case that is true. Jake has his port line placed on 12/22 and so far has been doing well it...the snorness has gone away, and you can see it cause he is skinny on his top half..but you can actually see his feeding tubes more, so this so far I think is just going to be blessing for Jake.
I would like to say that I hope we do not use it anytime soon, but I have learned that I can not think that just yet...I think I find it eaiser to get down on the whole thing when I do and he ends back up in the hospital. So with that that will come to easy to me as well.
We had a wonderful Christmas, the kids got what they wanted and than some...we are in the process of redoing their bedrooms, and Hannah and Jake are loving it..although we can pass on actually taking them to the store with us, that is not so fun. Everyone goes back to school on Tuesday...thankgoodness...I know I bet I am one of the very few moms that really want their kids to go school...:) We really have not done anything to exciting this winter brake...we are going next weekend to my parents condo at Loon Mt in NH for a overnight or two, and they are looking forward to that. Brannon has been at his mom for Christmas brake and actually comes home anytime now...(waiting for Kev to get back from the airport with him) My guess is he is going to be one tired teenager...he took a red eye last night ( not our doing) from CA to Boston...and than you add the time change, and the fact that I am positive he did not get use to CA time yet, he is going be tired and cranky.
The countdown to Disney is still on....6 months and 15 days left I believe...ohh we are not counting here!!! But at least we can say "We are going to Disney THIS year" instead of saying NEXT year.
Trying to think of what else that is new right now...and I can't...so I will leave this update with a HUGE thank you..there are so many of you that have kept Jake close to your hearts over these last months, and praying that things will get better, and I am a beleiver in that...he will get better with this. I wish each and everyone of you a happy and safe New year...and I look forward to posting some GREAT updates for this coming year on Jake.
Until Next time
Christine
Sunday, December 24, 2006 8:40 AM CST
Jake is home, doing great, back to fighting with Hannah...and just a little sore near his port...but other than that he is doing great.
We of course did not leave without an uneventfull exit that is for sure...We were slowly packing up, the nurse had come in and flushed Jake's port, and than took out the needle....she went to go get all of our home care stuff done...and leaves....she comes back in about 5 mins later...she shuts the door, and I say to her "What, did Doggie not sign his papers yet" ( this is very short, resident that we have know for months...and since his name is hard to say, we all just call him Doggie.. )
She said " I am so sorry...I am sorry", and she is starting to cry....I said what is wrong..."of course I am thinking bad stuff...and she said " I have bad news, I flushed Jake port with a different heperin"...I said "is he going to be ok...could this hurt him", she said no, it is just a different flush for a IV heperin than it is for a port one, which means it will not last a month ( his port just needs to be flushed once a month)....she said so the bad news is that I have to access him and do the new flush...and because he was screaming when she flushed the first time, they had to do a quick exray to just make sure"....The poor nurse ( and this is not one of our regulars either) I gave her a hug and told her to please not cry, accidents happen and it ok.
I said this could be a good thing, Jake can see how and why we got to port now....so we used the cream, waited 30 mins, and she went to put the needle in, one try, got blood return, and flushed and was done, pulled the needle out and Jake said " do you need to stick me again"...she said nope, your done....of course I started to cry...to see how simple, and quick it was, brought a huge sense of refleif over me...so all in all...we are doing great.
I can not thank you all enough for thinking of Jakers...I wish each and everyone of you a Happy Holiday and a Merry Christmas!!
Until Next time
Christine
Thursday, December 21, 2006 8:29 AM CST
Jake was admitted last night at Children's...I think I might have waited to long as he was vomiting pure blood by the time we got here...He was vomiting every 5 mins, and did not even move when they went to try for the IV...they tried twice, and was able to get in a weird place in on his hand...it did blow again last night, so we did have to redo it, and thankfull again, Jake did not wake...this time only took 3 times.
We did use the plan that Dr Fleisher order, which was Thorazine in his IV, along with Zofran and Benedryl...this sedated him to where he was able to stop vomiting...So he slept straight for 16 hours...woke up this morning feeling good...but his stomach was really sore.
As for right now everythings looks like a go for the port to be placed tomorrow morning...and I am not sure if they are going to restart his feeds today or just wait. I will update when I talk to the GI team as to what they plan is.
We are back on 9E...and have the biggest room on the floor...so it makes these stays that much easier...on ALL of us.
Thanks again for thinking of Jake
Take Care
Christine
Tuesday, December 12, 2006 1:20 PM CST
Well next Friday, Dec 22 Jake will have his port placed...
We meet with Dr B this morning and he was already in contact with Dr Russell Jennings...Dr B said he is the perfect surgeon for Jakers. Everyone feels that we have hit that point with Jake, even this morning it took 4 sticks to get the bloodwork and for the first time it took Jake over the edge, he was screaming and crying that he wanted to go home, he hated everyone...even himself he said.. Once Janice brought her "pooping pig" in, he started to feel better.
Of course I am happy and scared all at once...just hearing the negatives, are scarey, but from what they are saying, they are still low.
We know that is not going to fix the vomiting issues but at least we will now have a way at access him.
Thanks for thinking of Jakers.
Christine
Monday, December 11, 2006 9:30 AM CST
Whoohooo right... I know, someone turn the record of please...
Anyway, came home yesterday, he is back in 24 hour feeds at a rate of 55..which stinks, but we know the drill when it comes to kids like Jake, always start back at the bottom and work your way up...I am waiting for Dr B's office to call me back about a surgeon who he reccomends for the port to be placed...We do go see Dr B tomorrow morning, but every day counts when it when to get stuff done now with him...I am no longer going to be the " patient parent".
So if I hear today I will update...Already talked to insurance and they are willing to call and push for this to be done soon as well, and they are also working on what a infusion company can do so we can stay home when Jake has the port placed...but from what they are saying, it is a little harder than it sounds...there are no on call nurses...but at least I have someone on that end working on that for me.
Thanks for thinking of Jakers...
Saturday, December 9, 2006 8:15 PM CST
Just a quick update that Jake was admitted again yesterday afternoon for another cycle of vomiting. He is doing much better tonight, and now all the drs are feeling that a Port is going to be done....because it is the weekend, nothing can get done, he is not considered urgent at this time...and since it is the weekend they can not schedule anything, so they will give us a surgery prep op number that I can call on Monday, get a date for than and than for the port to be placed...unfortuanlly cause of the hoildays, it could be another month away... if Jake cycle agains and they can not get access than we will push for the port to be placed than...but for now we wait.
I am feeling much better that at least everyone is agreeing that it is time, only took 16 admissons every two weeks for the last 5 months for the drs to see it is now warrented. Kev and I were talking and we think that Dr B was not going to jump to it when he took Jake's care over cause he did not really know him yet...I think if he had been taking care of him instead of Dr N, it would have been placed by now...so I guess we have to look at it from all different sides.
But at least we know that we can now start fluids at home, they told us they would set us up with home care at first, and than they could access him from home, and go from there...than they said over time, they will teach Kev and I do it.
I will update tomorrow when I know more...thanks again.
Friday, December 8, 2006 9:09 AM CST
Well, I must say that was a long three days we just had...well worth it, but long.
Of course our trip did not come without any problems...from Jake vomiting, to having his gastric bag open up and drain all down MY pants on the plane ride...that was gross...to a long 2.5 hour drive from the airport to the hotel...getting stuck in MO morning traffic, and me thinking we were at the wrong place when the GI ladies said they did not know at Dr Fleisher...OMG...my heart sunk...but we were just in the wrong part of the building...of course soon as we got into the parking lot Jake was puking, we were so worried that we would have to have him admitted out there, but he held his own thank goodness. Dr Fleisher was able to see what happens when Jake get's sick...which was a good thing, cause our kids never do or act the way they are when they are not infront of the drs.
Let me first off start by saying this man is amazing...there was more than a handful of times that I held tears back...but I did start once when told Kev and I that he admire us for doing what we have done for Jake...that we refuse to let Drs just tell us that this is going to be who he is and that we have to just deal with it...he said he could not believe what we have gone thru with Jake...to hear that from this man, made me realize that I will continue to fight for Jake and make sure he gets the medical care that he deserves. He gave me the confidence in myself that we are doing what is best for Jake, and that we are not asking for too much when we explain to the drs at the hospital that we are not happy with how his CVS is being managed...he too agreed that 15 admissions in 4 months is not acceptable and is sure not helping Jake in anyway.
All in all we spent 6 hours with him that day...Jake did great with his DVD player and Brannon's PS2...so we were able to both talk with Dr Fleisher without any interruptions.
We started from the day he was born and went up until what we go thru now...He thinks very highly of Dr Bousvaros, and agrees with the treatment plan at this point. He also said that he feels giving the Depakote 3-6 months is a wise idea, and that is when he started talking to us about the Port..we still have a long way to go with Jake, and again...it all takes time. The only thing he gave us for a med is something else to try to "stop" or "abort" the cycle when it starts, which is cocktail mix of Malox, Lidocaine and Bentyle...of course this did not sit well with Jake when we used it last night as he was starting to vomit and complain of a headache...it has to go thru the G-tube, but that also means it comes up when he vomits...and it did out his nose...so the Lidocaine did not feel so good in his nose that was already dry and bleeding.
Right now, we are just in a holding pattern until we see Dr Bousvaros next week...Dr Fleisher has given us his personal cell phone number, which no dr has ever done for us, and we can call him day or night if we have any questions or concerns. He said he would also be in contact with Dr B often so he can be update on Jake...he wants to remain involved in his care. That alone is amazing to hear.
So here are the lists of Dx that he had for us after going thru all his records, talking with us and examine Jake.
Diagnoses
1. Familial Small Stature: In Jake's cause NOT to be confused with growth failure...at least where he is right now for weight...there was only a small period of time that he was falling off the chart, but after looking at his growth chart, Dr Fleisher said that he did maintain his own growth curve...just in the 3rd percentile. Again this was something that I had said for sometime about Jake maybe just being small...after all we are not big people.
Here is an example of FSS:Children with familial short stature have short parents. These normal children display normal growth velocity (speed of growth over time), and the development of their bones is not delayed (as indicated by the bone age). Children with familial short stature enter puberty at a normal time and typically complete growth with a height consistent with that of their parents.
2. Impaired Stomach Motility due to Vagus Nerve damage (we already knew this from the manometry)...Dr Fleisher read his Manometry as well and came to the same conclusion that Dr Flores, Dr Hyman and Dr Nurko came to.
3. Abdominal "Allodynia" issues "events in his belly that are ordinarily unnoticeable, instead feel very uncomfortable For example, a person with Allodynia may perceive light pressure or the movement of clothes over the skin as painful, whereas a "normal" individual will not feel pain. Pain perceived in non-sensory pathways. Allodynia is involved in the development of visceral hypersensitivity that characterizes IBS (Irritable Bowel Syndrome) which Jake show some signs of.
4. Depleted Peripheral Venous Access, In other words Jake's veins are starting to become a problem in getting an IV started...so in other words, Dr Fleisher feels Jake needs a Port-a- Cath. A Port-a-Cath is a type of device for intravenous (IV) access in patients who require frequent or continuous administration of intravenous fluids. This is a device that would be surgically placed under the skin...and that way ever time Jake went into the hospital for fluids he would not have to be stuck a hundred times, the access is right there, there is no pain, and the risk of infection with a Port-a-Cath is less than with a PICC line, which is what you have seen me post about over the last couple of weeks...Dr Fleisher is against a PICC line with Jake, there is also less maintaince with Port than a PICC. Dr Fleisher is going to talk to Dr B about this and this is something that we are going to pursue with Jake in the next coming weeks.
5. Probable CVS (Cyclic vomiting syndrome) superimposed on his current motility problems. Meaning, he feels that the cycles are brought on when his motility is at it's worst...this was also something else that was talked about with the Drs here...what is coming first, Jake's CIPO acting up or CVS starting, and than having his CIPO kick in. Right now, both Kev and I along with Dr Fleisher feel that his motility issues are not under control. When he vomits 5-10 times a day, but is still functional, that is not CVS...that is his motility issues. The CVS is present when Jake ends up puking every 5 mins until he become so tired that he sleeps, but is interrupted by continuing vomiting, even thought his body is worn out. This is when he ends up in the ER for fluids.
6. Pain and Nausea when his small intestines receives to much volume at once...meaning going slow on the pump might be a better idea.
7. Pain and Nausea when to much enters the stomach.
His last suggestion not really a dx is to let Jake have some control over what infuses into his J-tube and G-tube so that he can stop and start it when he feels pain or nausea...this is a good idea, but if it were up to Jake, the feeds alone make his sick, he would stop it all together...so we are going to work it, but we need to get him to understand that we can not just stop everything.
For anyone who has seen Dr Fleisher's article on managing CVS...and here is the link in case you have not and would like to read it. It is the article that says "Empiric Guidelines for the Management of Cyclic Vomiting Syndrome"It is a PDF file though.
http://www.ch.missouri.edu/fleisher/
He made one for Jake...so this will be good to have with us when we go to the ER next time...Of course we go back and see Dr B next Tuesday and by than he would have spoke to Dr F...so hopefully we can start moving forward with some of his suggestions.
I hope this update is easy to understand...I know there are so many things with Jake that can sound complicated, even I still get confused...so please email me if you any questions on what I posted.
And thank you for all thinking of Jake...I know that I would not be able to get thru a lot of this if it was not for your emails, your late night talks (you know who you are) and the words of encouragement that you offer us.
Thanks for reading and will update after our appt on Tuesday.
Monday, December 4, 2006 4:22 PM CST
Wow, I cannot believe that we leave tomorrow for Missouri to meet the CVS Dr himself, Dr Fleisher. I am so nervous and excited all at the same time. I know for me, I do not plan to walk out of there with the "magic pill" cause even the best cannot give me that right now for Jake. But I hope to gain anything out of is this way to make Jake's life better during these cycles have accepted the ER visits and the hospital admission, but I still not except my child being a pin cushion day in a day out every two weeks, or that he has to miss school, and that our whole family gets ripped apart every time Jake get sick, this has also become such a mental and financial drain on our whole family when he is sick...these are all the things that the Drs. just don't see...Since Dr Fleisher deals with this all the time, I am hoping he can be more sympathetic in a good treatment course for Jake...Our GI here has already agreed to work with Dr Fleisher when need be...our biggest hurdle right now is how to stop/abort the vomiting/cycle before it starts....this is where we need help the most. We know that gut rest and IV fluids really help Jake's body get back on track after a couple of days, and we are trying to prevent them from coming with the combo meds of Depakote, Q10 and Carinitine...but nothing we have been trying will stop it before it gets to the point having to go into the hospital.
We have tons of questions we are ready to ask...and I just pray that he has some words of wisdom for us.
Well, tomorrow we leave on a 6am flight from RI to MO, so we need to up around 3:45am, so with that being said, I will be updating on Friday morning...please continue to think of Jake in your thoughts and prayers during our trip.
Until Next Time
Christine
Tuesday, November 28, 2006 6:16 PM CST
I can not believe that we actually made it to one... Ususally he is back in the hospital by the time it comes around.
I will try to make this short as I did not except to much from this appt...in a nutshell, Kev asked what the time frame was with the depakote as to when they will know if this med is working for not...he said 3-6months...that is 3-6 months from now...so if this med is not working for him, we could have (at the worst case serino) 6 months of back in forth of the hospital until they can rule this med out....the other problem too is that he calls Jake a pt with CVS 1...which means he has other motilty issues that most CVS pts do not have...which makes it that much harder to treat than the "average" CVS pt.
As most of you know already know we have been struggling with access when it comes to placing IV's for fluids...and the talk of a PICC line has been tossed around for months now...but as I knew Dr B would say, that the risks outweight the beneifts... I understand that having any kind of line placed is a risk...I get that., but what do you do when you can no longer get access and you need gut rest...We expresed our concerns more about this, but did not push the PICC line at all, we just gave examples of how we are getting to the point that we can not properly treat him now cause he has nothing left..
We also made it clear to him that we understand this is going to take time...I get that as well...I am not looking for any one of them to give me the special med that will fix it all...CVS does not work like that...but the management of his treatment during a cycle is not working. The other problem is when they finally do get the IV in and bolus him, when he does wake up and is doing great, the IV has already blown cause it can not handle that large amount going in, and than we have no choice but to restart his feeds, when in fact his body is not done with the cycle and we rush to get this moving again,.....he wonders too if that is what keeps bringing us back every two weeks...but again, it comes down to access..if we can not get a IV placed, than we can not get treatment going and we are left with the slow process of making his body deal with the J-tube feeds when he is a bad cycle.
That when Dr B started to change his tune on the whole PICC thing and said that he is not totally against it, but he just does not want to put one in and than Jake does not get sick again... Uhh I don't see that happening at this point....so he said maybe putting one in sooner than later is better....but I do not know what that means either.
He wanted the depakote levels drawn today, and Kev and I both told him that we will only 2 sticks and if they can not get it, than he is not getting the blood....well they tried 2 times and did not get any blood...so we did agree to bring him to our peds lab tomorrow and have them try... I can not believe that I am going to let them stick him again tomorrow.. but I do know we have to make sure that his levels are in the thereaputic range in order to know if this med is going to work.
The other yucky part is that Jake lost three pounds this last week, he is back down to 37 lbs...not to worried cause if you live on pedilyte for two weeks your not going to gain. We do back and see him in two weeks, althought right now I am soooo nerovus about next week...we are leaving next Tuesday morning and that falls right on Jake's cycle... I did tell him if I started to see him get sick that I was taking him in the ER and have them try to pump him up with fluids and he looked at me and said I can't let him go if he is sick.. OHH please don't let this happen. Acutally Kev and my dad have been going to church with Jake...they are there tonight as I type this...I need a miracle right now cause we need to see this Dr.
Anyway..that is all to report...I have learned to take each day at a time, and be grateful that we do have good days inbetween these cycles...so hopefully we will be meeting santa this weekend... Jake is so excitied...and he also got his "Disney World Vacation Planning DVD in the mail today... so he has been watching that all afternoon...and I am sure if will be the first thing playing when he wakes up tomorrow... He is too funny
Please keep Jake in your thoughts during this next week..We really need him to meet this dr, without being sick.
Until Next time
Christine
Friday, November 24, 2006 9:11 PM CST
Thank goodness...it is so good to have everyone home, espically Jakers...I am just going to make this quick as there is not to much to update...except we were not able to get IV access, so they were not doing anything in the hospital today that we could not do at home...they were going to make us stay one more night, and I think Kev got under their skin...it has been a long couple of days and by the time the GI team in the am, I had just got there, did not know how the night went ( dh's do things different they us mom's do when they are in charge), and I had to learn the same time the GI team did how the night went.
They GI drs finally agreed to let us come home and do just pedilyte thru his j-tube at the rate of 55 24 hours until we see Dr B on Tuesday...our goal is hydration not calories at this point.
He is still vomiting, but it is not every 5 mins...more like once every hour...and there is not to much bile coming out at this point to be concerned...so fingers crossed being home helps him start to feel better and we can get thru this without going back before Tuesday.
Will update in anything changes from now until Tuesday, otherwise I will update on Tuesday how our first out pt appt with Dr B goes.
Until Next time
Christine
Wednesday, November 22, 2006 11:15 AM CST
Well we are still in the hospital....we think Jake has started to cycle all over again at 6am...he has been non-stop vomiting every 10 mins for the last 6 hours...they finally stopped his feeds and restarted the IV's....they did a KUB this morning and there is not obstruction...which we knew...so at this point, he is finally sleeping...and I am not sure if he will be able to go home today...the chances are we will be here another night.
I hope each and every one of you have a Happy Thanksgiving!!
Take Care
Christine
Monday, November 20, 2006 2:02 PM CST
Ohh Jake is back in the hospital again...and it sucks...poor Jakers got admitted last night yet again for his vomiting issues...he never stopped vomiting during the week, but it was not enough to warrent a ER trip and admission...but yesterday he woke up and it was awful..not only was he vomiting, but he was blown up like a balloon and had horriable gas and a boubt of diarreah....we got here last night, and even with our letter, still took over two hours for the IV to be placed...we got back to a room in 10 mins, but once your back there, does not matter how sick you are, you still wait..but last night Jake was in so much pain...and when I finally made an issues that someone needed to come in and please see him, that they so sorry they made us wait....to make a long story short, finally at 2:30am this morning, 9 IV try's in all, and 3 IV's later, and finally stopped vomiting, we were able to get some sleep. This IV stuff is more than I can handle...his arms are worse than they have ever been...it kills me..
They just started him on his pediltyte thru the J-tube and he is feeling a little uncomfortable again...althought not to surprised...he is also blowing up again after they restarted this, so he will go have a KUB later on tonight if it does not get better.
They had him on percautions today for a couple of hours they thought he had C-diff...and let me just say, he was on peed off kid that he could not leave the room...but all those tests came back fine and he was able to get out of the room.
On a postive note...the hospital is sooo full that we are not our ususal 9East, but 6East and we have a priviate room,and it is quite, so that is a plus for a change.
We will be here until tomorrow at the latest...the normal 48 hour stay.
We leave in two weeks to see Dr Fleisher out in MO so, we are very excitied to meet him.
Please keep Jakers in your thoughts.
Take Care
Christine
Wednesday, November 15, 2006 8:40 PM CST
Sorry for the lack of updates...it has been a LONG couple of days around here.
First let me just say, I have even more of a appreciation to when it comes to people with CVS....I had come down with a 24 hour stomach bug yesterday...only got sick like three times, but in those three times I thought I was going to die...it was horriable...but for the most part just had the body aches and slept straight thru until this morning at 5am when Jake woke me up to full blown vomit all over his bed....
Well he contiuned to be sick most of the morning...and I thought "oh god NO PLEASE NOOOOOOOO"...it has not even been a week since he home from his last hospital stay....than around 11am B calls me from school...he just got sick and wanted to come get him...so I know the bug is going around....he comes home and sleeps, does not get sick anymore and off to guatiar lessons right now.
Now Jake is still puking....I finally put a call into to Dr B ( this was my first time calling him....let's say I was nervous) to see if it was ok to give Jake the Diastat if he infact did have a stomach bug....well 30 mins later he calls me back...we talk and I tell him I strongly feel it is a stomach bug, but if my son and myself were not sick, I would swear this was a cycle...cause B and I only got sick three times, Jake has been sick all day...so he said if I wanted to wait ( was giving him pedilyte thru the J all day) and try one more dose of compazine and get back to him in two hours that I could do that, or bring him in.
I chose to try the med...well FINALLY the stinker fell asleep and stopped vomiting for 2 hours...so I called Dr B back and he answered his page... again something else I am not use too....but I told him that I got him to sleep and that I really wanted to try to stay home tonight if I could...he was ok with that, and said to just check his pull up, and that if he contiunes to get sick again, I could give the distate, but if that did not stop that I had to bring to him....and I have to bring his rate up on the pump as well, and if I can not get it past 40 tonight with out him throwing up that I need to bring him in. And in the mean time, Hannah starts throwing up... But so far, it was just twice...my poor pumpkin never pukes...it was weird to see someone without a fundo get sick...WOW...is all I have to say
But the thing is...I HAVE A PLAN....I know it seems weird that I am happy, but I have a plan right now...and I know what to do, and when to do it and when I need to go in.
Our next appt with Dr B is on Monday at 4pm.
So they are all still sleeping...praying for a good night!!
Wednesday, November 8, 2006 9:35 AM CST
After a long day of puking, we finally took him to the ER...and here sit again on 9W...He is sleeping now, and so far has been able to keep the puke down, althought he wants to get it out so bad...
I had a good talk with Dr B ( Yes Jenn, yoru Dr B) and he wants to know if he can take Jake's care over...he too did not understand why there was no ER plan in place for him...as he was really on IV fluids for 3 hours...from 4:30pm to 10:00pm... It sucks cause this is why we are here, and yet we still can not get fluids in a timely manner....and of course 8pm meds were not given until 1:30Am this morning....ahhh
I did tell him about Dr F and he was impressed to say the least, I told him for Jake, we have to do this...right now we have had nothing, and what we are doing right now is not working. I think he realized that. We will talk more after he comes back up from the scope suites.
On a side note...as we were in the ER..guess who comes walking in all sorry...Dr N...I was shocked, but Cathy knew he would come down( she was with us in the ER for a while)...I did not want to talk to much about it since Jake was right there...but he said " I felt so bad our conversation did not end well"....he said he would come talk to me today...but who knows...when I asked Dr B if he was coming up today, he looked at me and said " Who knows"..
So...that is our update...I wish Jake was doing better...usually he starts to perk up by now, but so far, he is just down and out.
Hopefully this will be a short stay
Take Care
Christine
Sunday, November 5, 2006 11:05 AM CST
BIG NEWS..BIG NEWS..BIG NEWS..BIG NEWS..BIGS NEWS..BIG NEWS
UPDATE AS OF MONDAY the 6th: We have our appt with Dr Fleisher on Dec 6th!!!
I was not going to post this until we had dates, but I have to share this with you all.
Let me first start off saying that is a *angel* out there...someone I have never met, or talked to personally, but someone that was touched by Jake's struggle. Right now there is nothing I can do to thank this person...I have been doing a lot of crying as things seem to be falling right into place.
I received an email the other day from this *angel* ( and I say angel cause this person come out of no where) saying that they wanted to help Jake...the next thing I know I have been given the personal phone number of *THE* Dr. David Fleisher..and was told that she had called him and talked to him about Jake...told him a little background on Jake and told her to tell me to please call him.
I looked at this email over and over again...and I did not know what to do...of course I picked up the phone and went to one of my three amigo's and after that, I picked the phone up and called him.
When he picked the phone up I was speechless...I did not know what to say...He said he had been waiting for me to call and wanted to know more about Jake. I started telling him about all of Jake's issues and surgery's he had in the past...of course I got the same "They did a what?" this was in regards the separate J tube and the Roux-Y, I have learned to laugh when it comes to this now and I was not to surprised cause in the past Dr N and Dr R both had the same feelings on why they did these two surgery's...but he was the first Dr to actually have any kind of feelings or emotions when it came to my child. We talked for 2 hours (it was hard to keep it together (not start crying) for those two hours) and a handful of times he kept saying "I am so sorry for what you have been thru, what Jake has been thru". He was disgusted to hear that it takes so long for the Drs to call me back, and he knows Dr N and Dr B very well...but he said as a Dr that has pts that are children no less, with chronic medical issues, there is no excuse for calling a parent back in that time frame.
He also said that what we are doing right now with Jake is not helping him at all...he said the longer we wait on really treating the CVS, the longer it is going to take to get Jake to feel better. He said the "just know" of what is going to happen if Jake's starts to get sick, cane make the CVS worse, he said in his child population of CVS pts, the anticipation of when the next cycle to start is enough to send them into a worse cycle...
Gosh...There is so much that I had learned from this conversation, and it helped me put things into persecutive when it came to Jake's medical care. He asked besides IV fluids, what else are they are doing to manage his CVS, I said well, this is where we need help, I told him that they are just telling us that we need to just be pt and when we find the right med and dose that things will get better, and bring him into the hospital for fluids is what we need to do until we find the med, I told him that he is just on the Amtriptylne and that is it, he asked what Dr was taking care of Jake, Dr N or Dr B, and that he would be happy to give them a call, I told him that neither one of them are Jake's Dr's, or at least they are not actively involved. I told him we did have a appt with Dr N for the 27th, but I have canceled that, there is not point in wasting anyone's time, I do not need to see him for him to tell us that "sorry nothing we can do"...so right now all I have is the GI team on the floor when he does get sick, and with the hopes that Dr R will be there for Jake...I tried so hard at this point to not brake down in tears...He than told me that he wants to help Jake. He said if we are ok with that, he would be a very important and active Dr in his care, he said he would work with Dr R and us in the management of his CVS.
So we are off to Univerity of Missouri to meet this wonderful Dr.
He wants to go thru all of Jake's medical records and tests...he is than going to come up with a plan for Jake...short term and long term plan...and than he would work from there with Dr R. He also said that we would be able to reach him 24/7 if I have any questions or concerns during his treatment, he said I don't care if it is 3 in the morning. He wants to be a critical role in his care...right now Dr N does not to deal with it and Dr B has not offered to treat Jake as one of his CVS pts, but out of no where, one the top CVS specialist in the country wants to help my Jake. This all seems like a dream...and I am waiting to wake up.
Yesterday afternoon was a pretty emotional day for me...not only did Dr Fleisher come in and offer his services...my insurance company has off ered to pay for the visit..that is when I finally broke down.
I still start crying when I realize that this really going to happen...I have a DR that wants to help Jake...he has nothing to gain in helping us...but we have so much...We owe this to Jake to make sure we get him the help he needs...and the sense of peace right now that we both are feeling is so overwhelming...Kev and I both sat up last night and were in shock and yet so thankful, so thankful that someone wants to help our son.
As of right now, I do not have the dates yet, as I will be calling him back on Monday, to let him know that we will be out there, and we are hoping for the Dec 1 time frame...gives us time to get medical records, plane and hotel, and also that is when Jake would not be in a cycle...can't fly with him being sick.
I hope you don't mind me sharing this with you all...I just cannot believe this has happened I will update when we have a time...and of course when we get back.
My Jakers is finally going to get some help..
Thursday, November 2, 2006 10:44 AM CST
Hello...I hope everyone had a wonderful Halloween. Jake and Hannah had a blast...Julie and Alison came over to treat or treat with us, which was so fun.
There is not to much to share right now with you regarding Jake...Last time I posted we were suppose to be giving another med a try with Jake, but that is not going to happen...I had my hopes up for a week that we were moving forward in the area of trying to fit a right med for Jake, but I just found out on Tuesday that they decided to not use this med with Jake...but the crappy part was the Dr failed to call me and tell me...At this point I am very upset with how Jake's care has been going...The Drs just tell me they are sorry, there is nothing that they can do, we just need to go in the hospital everytime he gets into a cycle, and with time, we will find the right med for Jake...but at the rate we are going...it is not going to be anytime soon...at least I feel that way. So we just sit and wait...and pray Jake starts getting better on his own.
I also wanted ask everyone if they could please think of a very important little guy today...His name is Jacen...today he is having pretty major GI surgery to hopefully help with his constipation issues. They have been wonderful friends to us over these last couple of years, and Cathy has been there for me when Jake was at his worst...Now they are going thru a big surgery...and they need lots and lots of prayers.
Here is his CB site...I know Cathy will be updating as time allows...please if you could please go over there and send Jacen your prayers during this time,I know how much it would mean to Both Cathy and Tom.
http://www2.caringbridge.org/ct/jacenpaul/
Until Next Time
Christine
Thursday, October 26, 2006 10:50 AM CDT
Jake is home, we came home on Monday, and he is back to himself and back to school which is wonderful.
I am still waiting for the script to be written for this new med his GI wanted to start him on, but I have not received a phone call back yet.
This is the most frustrating part of it all...having to wait for phone calls.
I thank each and every one of you that contiune to pray and think of Jake....we have a great outlook on this whole CVS thing and know with time we will find the right combo of meds that work for Jake, and it just the the time between now and than that makes this whole thing hard.
Take Care
Christine
Tuesday, October 24, 2006 2:28 PM CDT
Well were are getting to go home today...thank goodness...I am so tired...I hope I can drive home.
First of all, thank you Cathy and Karen..I do not think I needed anyone more than the both of you these last couple of days.
As for the port or PICC line, he feels that the risk outweight the benefits for Jake right now. To many times they can get infected and he said the home care is not all that easy either...So for now he said he wanted to a couple more weeks and than we can go from there as what to do next, it could be talk of a port or just talk of another med change. We are adding another med (don't have the name with me on the top of my head) and upping his amitrypline...so we are right back to time.
I will update when and if I know anymore.
Thanks
Christine
Monday, October 23, 2006 5:05 PM CDT
Ok just another quick update....looks like we do not need to worry about metabloic issues right now....so that is good.
We did talk to the GI team, and it looks like we Jake may be getting a port cath or a PICC line now. This would help Jake in so many way, and helping from bringing in into the hospital every 2 weeks. They said they can have nursing care come when a cycle starts for Jake and will be able to keep him at home.
We a looking at planning to have a meeting tomorrow on if this would be something that would beneifit Jake.
I am so tired, my heart brakes to see Jake like this and as his mother, not being able to anything for him.
So I will update again tomorrow when I know or after we have our meeting
Thanks to you
Christine and Jake
Monday, October 23, 2006 1:35 PM CDT
What productive day so far. We were able to see Cathy, Tommy and Jacen this morning, so that was awesome, as I need Cathy...she is my rock. I love you for that.
He is stil sick this morning, and we just finished the 4th bloodwork for the metabloic workup, cause they are still coming up high. We had someone from gentics come talk to us and we are now waiting to see them again along with the rest of the GI team. Hopefully Dr N too, but who knows
I will update when I know more
Thanks
Christine
Sunday, October 22, 2006 12:15 AM CDT
He is back on his vomiting again, this is day two, and with more blood they want us to bring him to the ER again...OH GOD....this has to end for this poor child...I love him sooo sooo much
Thanks
Christine
Sunday, October 22, 2006 8:38 AM CDT
I am sorry that there has not been an update in a while. Jake was doing really good, and we have been out of the hospital since October 5th., so that makes it two weeks and one day since we left. Unfortunately Jake started getting sick again last night...we tried all night to it to stop, even sent Kev out to get the adivan refilled just to be on the safe side...he did on this morning until he got up, and he has vomited twice so far...I guess today will be the test to tell if this is a cycle or just a fluke or something.
Please keep Jake in your thoughts and prayers right now that he can pull this without having to go to the hospital.
Thanks
Christine
Saturday, October 7, 2006 2:56 PM CDT
I did updates on Jake on one of my support groups, so I just copy and pasted both updates so I did not have to write them out again...as I am soo tired.
Friday, October 6, 2005 1:12pm
I have to make this quick as I am starving and need to get back to the floor before GI comes up....but yes we are here at childrens....we did miss the cycle...and he was pretty bad last night. They took us in right away at the ER when I mentioned Cyclic vomiting, and he was on an IV within 20 mins.
Dr N came in around 6 to let me know that some of the metabolic(sp, sorry) came back very hight... I forgot one already, and the other was Pneumion ( spelling agian sorry) were very high...he said that he was going to have them tested again to make sure it was not a fluke since neither one of us felt that any of this would come back abnormal...the problem is that it needs to be drawn while Jake is sick...which he still is, but also before any IV fluids were given...the first round was done before the IV was started....so I have to talk to Dr N when he comes in this afternoon and see if they sample they ended up taking AFTER the fluids were given is valid or what.
They tried everything last night to get the vomiting to stop, but nothing worked...he went from vomiting every 30 mins to every 5 and eventually it was just blood he was vomiting up...I do not think I had ever been so scared in my life when I saw that. They told us if they could not get the vomiting stopped and it contiuned with the blood, he would need a transfusion....I was in shock...how could he get this bad so fast. They finally had to sedate him with versaid ( again spelling and no sleep do not work together) and he finally was out...and it stopped the vomiting which than stopped the flow of the red blood to brown blood out his g-port. It was a long night.
Needless to say we are still here, they still have him pretty much sedated, so he has not vomited at all today....but I do know they want to restart his feeds, and that ususally gets the vomiting started again...so fingers crossed he will hold his own.
So right now do not know too much more...still waiting to talk to the drs today, so I will update more later
Again thank you all so much for thinking of Jake...he truly is one amazing child.
UPDATE as of October 7, 2006 11:19am
Just wanted to do another quick update as Jake is sleeping again so I could leave him.
By the time the GI team came up it was around 7:30pm...needless to say I was pissed...All I wanted was to have the slowly re- introduce his feeds back since I knew we were going to be here another night...also his IV blow at 2pm yesterday and I wanted them to wait before they went sticking him again...we actually had to have the transport team ( these are the med flight nureses) come to the ER to place his IV, that is how bad his veins have got...it is horriable. So I did not want them to have to go fishing for more veins that were not even there. So of course they had to wait for the GI team to come up and talk to them....so he went from 2pm to 8pm before he had any fluids...but he really started to perk up during this time.
So the next thing I know Dr N walks in ( was not expecting him) and he gave us the ok to start to the feeds...and we upped his Amatrip med as well...he said if he contiunes to do well than he is comfortable with sending us home....We also talked more about the metabloic bloodwork and he is still waiting for more to come back, and than he is going to run all of it by the metabloic drs and get there thoughts...and than we go from there on that end.
So they finally restarted the feeds and sure enough he woke up hurling and puking again...and in pain...of course I knew this was going to happen...it does everytime. So the GI team came in this morning and were not happy with they way he looked....I had to explain that I am not surprised, we stopped the ativian and restarted his feeds...( which is half and half at the rate of 50) I was expecting this....they asked why and I told them...80 f his problems are caused by his dam feeds...you would think they would have picked that up by now... When he has just an IV and totally gut rest he really starts to perk up...and BOOM...restart the feeds and he goes back to puking again....so we can now tell that he is not totally done with his cycle, cause he does ok with his feeds when he is not in a cycle.
Oh I had also talked to Dr N about the blood...and he said by upping the Amatrip that helps with the retching/vomiting part..he said we were on such a low does to begin with...that hopefully if we can get the vomiting and retching undercontrol, than we can prevent bleeding like that to happen again....I hope so cause that was so scarey...so scarey.
So he is back to sleeping again...we gave him compazine and he passed right out...so hopefully he will be awake and start to feel better when I get back to him...he also needs to go pee as he has still not gone since yesterday afternoon...that would be another reason why we may get stuck her another night...so I need to get him up and moving soon. Weekends suck anyway in the hospital cause there are no motiltiy drs, just residents...and Jake's issues are beyound them right now...besides Dr N there are only two other Drs that know us here from being inpt and that understands his needs, but they are not here either....so the plan is to go home at some point today...I hope.
And to top it off...I am sick again, I get sick everytime Jake ends up here...the nurses say the circulation sucks and alot of parents that complain about that happening when they become frequent flyers... lovely...I will say I have become to hate this hospital so much( only cause we are here so much)...we counted the other night...and I think he has been here about 12 times in the last two months...every 2 freaking weeks were are here...it is crazy...just crazy.
If none of this makes sense or words do not go together I am sorry...I really think I have only had about 5 hours of sleep since Thursday...so I am sooo tired.
I hope to know more next week when I talk to Dr N...and than I will update...again thank you all
UPDATE #2 for October 7, 2006 4:00pm
We are finally home from the hospital, so far he is doing ok as he has been off his feeds now ( he gets 4 hours off a day) so I just cross my fingers that the vomiting does not start back up later tonight or tomorrow.
Thanks again for all your postive thoughts.
Christine
Thursday, October 5, 2006 10:24 AM CDT
And the Cycle Starts again.....
Well we are back to the ER with Jake...he has been vomiting the last two days...thought if I did not talk about it, it would go away...but he has not stopped vomiting since 6am...so Dr N wants us to come to the ER...Not sure if we missed the window to stop the cycle...I am guessing no...but with the new meds, maybe it would be a quicker cycle once he gets the fluids.
Anyway..please please keep Jake in your thoughts...this poor child is stronger than me...that is for sure.
Thanks
Christine
Friday, September 29, 2006 11:46 AM CDT
Sorry I am a day late on this update.
Well, we saw Dr Nurko yesterday for our follow apt...Jake is doing great right now...there are some things we changed at home for Jake and that was slowing his night feeds down...and wow, since I did that, he has not vomited once...not even the early morning puking (which became a normal thing for Jake to do even when he was not in a vomiting cycle). But the problem with that is that he stayed the same weight as he was a week ago....Dr N is going to give us two weeks to see some gain, and if not than we have to work getting those night feeds up again...but for right now we do not want to touch anything and that way we can see what his body will do next. We already know that 80% of his pain, and bloating and feeling sick are feed related, but we do not have any other choice, he needs to be on tube feeds.
Dr N did answer my questions on CVS that I had...even mentioned that I have a bunch or articles from Dr Li...that he put on CVS, and to my surprise, not only did our social worker, work for him 2 years ago, but Dr N keeps in contact with him regarding Dr N's CVS pts...so that was neat. He did tell me if I wanted to call him myself and talk to him, that he would be more than happy to talk to me if Dr N could not help me with something CVS related...of course I have no reason right now to call him...I trust Dr N's judgment on CVS.
He did tell me there are *thousdands* of other meds to try as a preventive if the amitriptyline does not work. We talked about his CIPO and the CVS and he said we may never know what comes first, the CIPO flaring up or the CVS starting, and than flares the other one up. He told me most of CVS pts will in time either continue with the vomiting part and start to get head migraines as well, and some just stop the vomiting altogether and than start to get migraines...he said the number is over 30% ...that just sucks...I know the feeling all to well and I cannot imagine add migraines to list of Jake's medical problems.
I once again asked about what we can do as far as having home care (a nurse) come over and maybe get an IV started on Jake from home, and maybe putting off the ER for a little while and/or a hospital stays altogether...he said for right now, this is still a new thing for Jake, and if they can get more of a consistency with his cycles than maybe something like that can happen, but for now we are to come to the hospital ER if we were unsuccessful with aborting the cycle. He said that blood work needs to taken and so on, and until they can get to know Jake a little better with his cycles, right now we can not do that.
So than I asked him if there was something we could do to make the ER less traumatic for Jake...meaning we do not need every ER doctor coming in and looking at his green bile or asking me over and over again, what happened, what is his history....he said we still have to go thru all the regular ER protocols, but they will give us a card that explains that Jake is a CVS pts and this is what needs to be done...he said maybe that will lessen the number of Drs and stuff around him...they talk about CVS being one of the most painful, and awful feeling when it comes to vomiting and feeling nausea, and what they need is a dark quite place, and a boat load of fluids, which would be an IV. So for now, we may be going thru the revolving door at Children's more often than we would like until this gets under control. Which I know will, it is just a matter of when...we all know that when it comes to motility issues, it is just that, a waiting game.
So for now...we go back to peds for a weight check in two weeks and than back to see Dr N again in 4 weeks...unless Jake has other plans...and I will be sure to update if that happens.
Again, thank you all for you words of encouragement, your emails and phone calls...It has been a long 2 months...and I do have faith that things will start to get better soon.
Until Next time
Christine
Wednesday, September 20, 2006 7:20 PM CDT
Jake is home!!
Still getting sick, but there was nothing more they could do as far as the hospital stand point. He has been transitoned back to full feeds so the IV fluids were stopped, and at the same time we also lost his line...I said no more IV's...my kid looks like he is a drug addict the way his little arms and legs look.
All his bloodwork is back up to normal as well, so to continue to stay there would be pointless since we can do much of what we were doing there, we can do here...minus the IV's...but they said we have a good couple of days in him before he gets dehydrated again, if the vomiting gets worse as well.
We are back on 24 hour drainage, and will start the 20 hour feeds tomorrow...they only time Jake seems to be pain and vomit free is when he is off his feeds (gut rest) but that is not an option for us...so we really just have to work thru his already existing problem, the CIPO, this is where he is having all the dark green bile...the small intestine is acting as thought there is a blockage in there, but that is where the Pseudo part comes in, cause there is no real blockage. So when Jake's CIPO is acting up, that is when the Cyclic vomiting starts...they do know if it is the CIPO or the CVS that is causing one before the other, but we do know that they are running hand in hand.
On top of all the other meds he is on, he is no on Zantac (our insurance won't cover it), carafate, cause they started to see blood come back thru his vomit, but also coming out of his J-tube...and that was a first.
Compazine for the nausea, and Ativan for this vomiting too...this makes him really whoohooo, but gives him a couple of hours of dead sleep....and the one we start tonight for the Cyclic vomiting is the Amatriptyline...We go back to see Dr N on the 28th...and hopefully we can report things are looking good...althought he told us until this med takes time to work you may be bringing him back for a couple of days here and there for fluids...there concern is when the back up from the stomach is bright yellow and dark green....Jake looses alot of things when that happens.
So that is all I can update on now...as this is all I know...they are saying and treating Jake for Cyclic Vomiting.
Thanks for your thoughts and prayers...and sorry on the missed phone calls...I will be home tomorrow.
Tuesday, September 19, 2006 4:21 PM CDT
Just a quick update as I am very tired...We were admitted last night...so we are still here. They are treating Jake for the Cyclic vomiting...he had a bad morning of pain and vomiting, and after a dose of zofran and compazine(I am not sure on the spelling)and no releif they gave him adivan, which made him silly, took the pain and vomiting away for 2 hours....but he has been sleeping since 10:30am..not sure why, right now just waiting bloodwork to make sure all of that is well.
They have not started formula feeds yet, just pedilyte and he is still having a tough time with that as well. So this is all I know...hopefully we will start the ampytriplyine tomorrow morning, this is a preventive for the cyclic vomiting...but can take up to 6 weeks to see improvement.
I will hope to be able to give me informaiton and another update tomorrow.
Thanks for thinking of Jake!!!
Monday, September 18, 2006 8:05 AM CDT
Jake is heading into Children's ER for some fluids...hopefully this will be just a couple hour stay and we can go home after some well needed fluids.
I will update soon as we can.
Thanks
Christine
Friday, September 15, 2006 8:00 AM CDT
Well, Jake is having just a little bit of a hard time right now....not sure what is a "bug" and what is his normal "tummy stuff". He started yesterday with really vomiting again, and all the drainage is yellow bile...Uhhh so frustrating. He did have a little fever yesterday and last night, so my fingers are crossed it is just a bug...althought he is acting playful and goofy, which is a good thing, but also a sign that it very well may not be a bug.
Right now his fever is down, and I am just waiting to hear from the peds to see how his blood work was yesterday. He wants to go to school today, but I am so nervous to send him if he is still vomiting. If his fever comes back, than no, he won't be going....and not surprised that all this starts or begins on a Friday.
If anything comes from this, I will post and let you know, other wise I am just thinking this is bug and will pass sooon.
I want to thank all of you that have gone to Michael's webpage and sent him well wishes...Things are looking good right now and Gayle and Brian seem to be holding up...they really do have such an amazing support system...that just goes to show the kind of people they are. I know I have received emails saying that they visit him a couple times a day, but do not always sign his guestbook...if you could just leave a quick messeage saying that they all still remain in your thoughts and prayers, I know that the messages really help Gayle and Brian get thru the day.
So again I thank you all
Until Next time
Christine
Monday, September 11, 2006 7:41 AM CDT
Good Morning!!
There is not to much to update on Jake...he is doing ok..his tummy hurts him every once and a while, but he pulls himself right back up again. We have to have some more blood work done this week, but other than that, so far so good.
He just loves school...he loves it. Although the bus still makes me nervous with him, but Hannah will not let him out of her sight...so that is good.
I also wanted to just add a reminder that Jake's friend Michael will be going into tomorrow for his bone marrow biopsy, a spinal, and his port (which is an IV line placed in his chest so they can access meds easier). So I ask you to please keep Michael and his family in your thoughts and prayers tomorrow, and please make sure you send him well wishes and good vibes on his website, which I have posted at the bottom of Jake's.
I know how much it did for us and Jake when we had everyone praying for him...so please, please, pray for them tomorrow.
Thanks
Christine
Thursday, September 7, 2006 4:50 PM CDT
Jake had his GI apt today, which I will talk about in a min, but we given some very sad news this morning.
One of Jake's very close friends, went to preschool together for 2 years,and are regular playgroup friends, was diagnosed with leukemia on Tuesday. Currently they are at Boston Children's waiting to get the course of treatment Michael will need. We were able to go see Michael and his parents after our GI apt today, Michael looks great, but as you know, he is going to have a long road ahead of him.
His Mom and dad are holding strong, I guess as strong as any parents would be after given this kind of news regarding your child. They have a wonderful family support system, and they have lots of friends that love them dearly...I am asking you to Please keep Michael and his parents in your thoughts and prayers over the next couple of weeks. Michael also has a little sister, almost 2, Samantha.
We know that having a child with a chronic medical illness is tough on a family, so as they head down this long road with Michael, may you please keep them in your thoughts.
I know a website will be set up for him in due time, and than I will have that posted on the bottom of Jake's, so you can send him and his family words of encouragement and strength.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jake had a great apt today. He weighted in at 40.2lbs...yes shocking, and is doing good. We talked with Dr Nurko for quite sometime, and the only thing that came back bad was the bacterial overgrowth....which we already knew...so we may start a new antibiotic for that. As for the vomiting, he wants to give Jake another 3 weeks to see how he does before he changes anything, but he said that he has a feeling that Jake will have this cycle of vomiting again, he strongly feels that he also has this cyclic vomiting. While I told him the information I have on it and read on it describe Jake to a T. He said generally kids that have CVS do not have an underlying motility disorder, but he said he is currently treating a couple of his CIPO kids with CVS...he said it something that can come out of now where, meaning he did not have to born with it, or start after a surgery.
The plan he wants to do is when I see the cycle starting (which will not be easy to do, cause I can not tell except for the change in bile color, which he also said, he CIPO kids experience in the start and to the finish of the cycle, the excessive bile that is) is to give him zofran thru his J and stop all his feeds and give just pedilyte thru his J. The hard thing about these cycles is once the vomiting starts, you have to wait it out. He said generally when it becomes a chronic issue of having to go to hospital for IV's, than they start preventatives like amitriptyline. But right now since he looked great today, and he only got our of the hospital a week ago, he does not want to change any meds at this point.
As for the proplusid, right now Jake is on a holding pattern, which means the GI called and said that Jake had an adverse reaction (GI Bleed) and has to wait until they feel it is safe to give the med again...generally he can only be in this holding pattern for a month with his med...so in 3 weeks if all is going well and we all feel the Zelnorm is working, than Jake will be pulled from the proplusid program. The reason they do not want to pull him yet is cause once he is out, it takes a while to get back in, you have to start the process over from the beginning.
As for the food by mouth, he told us not to push it right now, he wants to eat anything than we can, but not force it or push food by mouth...and than we will come back in 3 weeks and hopefully have a long term plan in place...right now our short term is to see how he does over the next few weeks with his vomiting.
So it was a great apt all around, but the news of Jake's buddy Michael is alot to take in right now. Jake knows that he is sick, and that he will be in the hospital for quite sometime, but he does not know that it is cancer.
Please check back for Michael website.
Thank you and take care
Christine
Wednesday, September 6, 2006 12:14 AM CDT
So far he has been doing much better with the new feeding program...Part of me is pissed that I did not stick with my gut on his feeds and how fast they were going, on how much he was getting and how he was indeed getting way to much, and than add no other water, no wonder he felt like crap.
So far we manage to get two days of no vomiting at all, which is great...he did vomit once the other day...and than started again this morning...and the yellow bile is starting to come back again...uhhh...we go to see Dr N tomorrow, so I have my book of questions with me...so hopefully it will be productive.
I am going to ask about the Cyclic vomiting and get his thoughts and than go from there.
Otherwise he is slowly starting to want to put food in his mouth, and taking sips of drinks here and there. I did pack some goldfish with a juice box in school with him yesterday, but the nurse called me and said he had one fish and that was it...he did alot of head tilting...which is the sign for my stomach hurts...other than that, he had a great day...no feeds, just fun.
I will update what Dr N thinks after our appt tomorrow.
Thanks for all the contiuned thoughts and prayers for Jake...they have made a world of a difference that is for sure...
Until tomorrow
Christine
Saturday, September 2, 2006 10:07 AM CDT
First off let me say I am sorry for not updating sooner...By the time we got home yesterday, it was one of those night were I had not even had the time to sit down at the computer..It really has been over a week since we have been home (with our trip to CT before that) last night we were finally able to just relax...and not to mention Jake had so much fun spending time with Brannon, as he only saw B for 15 mins the night he flew in and Kev took brought him to the hospital...so we really have just been enjoying being home.
As for the test, Jake did great...they got us down to the OR around 6:30am and got started around 7:30...about and hour later the Dr came out and told us (surprisingly) that everything looked great...there was so red irritation near the g-tube, but everything else looked great, not active bleeding or ulcers...this is very reassuring as at least I know the blood is not an active thing...but something we need to keep an eye out on. He said that people that have or get gastroparesis, and vomiting is an issues, escpcially as violent as Jake's has been, bleeding is very common, and came go away just as fast as it came on.
As it has been in the past, the fundo is still in-tacted...and the Dr said he was shocked how the scope gave him a little resistant going thru the fundo..of course I had to laugh cause I swear that thing will never come undone...ever, and it was is the main source of Jake's problems.
He also placed the probe thru his J-site and it looks healthy, but he said the the Roux limb ( this is they surgery that was done when the J-tube was placed) was filled with fluid..he called it "a parking ground" for growth (bacterial overgrowth)..and of course he too had to ask why this was done with Jake...he said never mind why they chose to do a separate J on him, ( which was done on Jake cause his old Drs. felt since he was still vomiting up feeds with the GJ tube that a separate J would be great, DR B rolled his eyes and said we would never do this surgery for that reason, which is still hard to hear, makes me feel like I have once again failed in Jake's past medical care) but to do a Roux-n-Y procedure on a child that has normal anotonmy...made no sense to him, and said no wonder why this child's motility issues are so bad..in other words he has had things done that kids with exsiting motitly issues should have never had done.
He did say that he is not going to make any suggestions in Jake's care, since he does have Dr R and of course Dr N as his current Drs, but he still thinks that this CVS or Cyclic vomiting is what Jake might be suffering from...even thought the treatment is easy, I am not jumping into this cause all that means is just another DX for him, that I do not feel needs to be put on him, at least until we get back to his Drs..and of course we will discuss it.
We go back to Children's on Thursday the 7th to see Dr N...and we will hopefully be able to walk out with a better plan of an attack.
Right now, he is doing great, back to sleeping thru the night, smiling, laughing and so excited for the first day of school on Tuesday. So for now, we are going to enjoy the next week without any medical talk, or medical anything at this point and just try to get back to life.
Again, I am sorry for not updating sooner.
Christine
Thursday, August 31, 2006 1:58 PM CDT
For 7:30am...Jake will have the scope...so hopefully they will be able to get the information they need, and if there is any damage get working on healing it...They are going to also place the scope thru his J-tube, so they can get to the Roux-n-Y and get fluid from that pocket as well.
Please keep Jake in your thoughts tomorrow morning, and I will update when we get home.
Thanks
Christine
Wednesday, August 30, 2006 4:41 PM CDT
I apologize for not being able to update sooner. I am home with Hannah and Brannon tonight while Kevin is with Jake tonight. Hannah had her Girls scouts Pool Party today, so I wanted to come home to take her to that...so we are having dinner at my parents (I need real food, and I have no desire to cook) and we will be staying overnight here as it is a closer drive into Children's for me.
Let's see...the good news is Jake is starting to get back to himself, which is still vomiting about 10 times or so...usually just in the morning....Which is how he was today...and before I left to come home, I was able to get him up to the playroom...where he stayed until Kev came upstairs.
We will be there until Friday..maybe Saturday depending on when he goes in on Friday for the scope...and of course to see how well he does after anesthesia, last Nov when he had his scope, he was vomiting quite abit...so I hope this time he does better. We talked to the Drs today, (that have also been in touch with Dr Rosen) and the plan for now is to give one more dose of the Zelnorm, also add Zantac in-between the prilosec doses and still keep the neurontin the same...And by next Thursday when we see Dr Nurko for our regular follow up appt, the biopsy's will be in, along with the results of the fluid they will be taking from his Roux-n-Y near the J-tube site to see how bad the bacteria level.
They also talked to us a little about something called Cyclic Vomiting Syndrome(CVS)...basically is it is another term for abdominal migraines...generally they see it in kids and in kids with parents that have a history of (head) migraines, which I suffer some...so there is no way of testing for this, they just go off symptoms and medical history and than treatment...which is generally antidepressants...but since this just started, I am not so sure, althought he fits the mold of this to a T, BUT we* may* have a chance to go back to the proplusid, on a higher does, than we want to try that first since he did so well on it for so long. Plus proplusid is a fast acting/seeing med. But again, I want to run this by Dr Nurko on Thursday before we make any changes or other DX's.
I think the worst news of all was when they Drs in the ER pointed out his teeth to me, There are now black tooth decay on his bottom back part of his front teeth from the vomiting...and even worse is that this all just came about in a matter of weeks...cause he just had his cleaning in June and his dentist would have picked this up right away, even the GI Drs were wowed when they saw his teeth..thankfully they are still his baby teeth, but at 5.5 years old, we are running out of time..his big teeth will be in soon.
The best news of all is that Jake will be able to go to school (BTW, starts next Tuesday the 5th) with NO FEEDS...so no backpack...just his "Cars" backpack...so he now gets 4 hours a day off the pump, but at this time will be vented. He is back to 12 hour venting...cause if we choose to go back the proplusid route, he can not be vented at all...We are also trying to give ( and this will be started tonight) some water (150ml's) thru his g-tube at night...it will be going in over a rate of 15 for 10 hours..they want to make sure he is getting the enough fluids cause we are also dropping back on a "juice box", so he is down to just 5 a day now. So the pump will run at a rate of 72 for 20 hours...no more 24 hours...WHOOOHOOO!!!
I will say Jakers was more excited than I was...and I had tears of joy in my eyes I was told this...So you can imagine the biggest hug I got from Jake when I told him he did not need to wear his backpack to school.
Well that is all I have for now...like I said..he is doing much better...he seems like he is back to his normal, with the vomiting in the morning, and he is still draining these huge chunks of dried brown/rusty blood...but the scope will be done on Friday, again just waiting on a time, which I will update when I know that...by tomorrow I am hoping...maybe tomorrow night.
I will update again at some point tomorrow afternoon when I get know more...again, thank you for the continued thoughts and prayers for Jake. I also apologize if this is scattered..I really have not had a good night sleep or slowed down since we left for CT last week, my head is still spinning.
Christine
Monday, August 28, 2006 8:16 AM CDT
We are home...for now.
We got home from CT late yesterday afternoon...he is still not feeling well, but was able to make it thru the night at house...so now just waiting to see who will see him at Boston since both his GI's are gone...I will update again when I know more...Thanks for all the contiuned thoughts and prayers for Jake.
Christine
Sunday, August 27, 2006 0:45 AM CDT
I am doing yet another quick update cause Jake ended back into the hospital...We came to visit our friends and family in CT, and last night he ended up at Yale's New Haven's ER and than admitted due to severe vomiting, dehydration and still vomting up blood.
We are hoping to go to back to Boston tomorrow where his Drs are..so I will update when we know...Just please contiune to pray for our Jakers....Thank you!!
Saturday, August 19, 2006 9:16 PM CDT
I am sorry for not doing a little update sooner...trying to get back to some normal stuff around here.
Jake seems to be holding his own...Most of our vomiting is in the morning..and when he drinks anything...which is not too often, but he trys for a sip here and there...he has also tried a bite of food (like a baby bite he calls it) and shortly after that feels full. Since we do have his G-tube draining, we can see right when he says his tummy does not feel good, all this fluid comes pouring out, and shortly he is back to feeling ok...or if he vomits.
I think the zelnorm might be helping, since I have notice a lot less yellow and green bile, and more clear stomach secreations...so that is good. His weight is great...ohh his cheeks are too sweet. We go weekly for blood work, and have to go back to the peds next week cause another thing was a little high on his labs...it is kinda frustrating as one time it is one thing, magnesium, than it was potossium, and now this past one was ( two draws in one week cause the potossium was low) phosphures( sorry for the spelling on these...they are not easy...I am surprise I even know what they are)...this happend when he was in the hospital the first time...Dr R thought he was getting to many calories...so now it is back again, but nothing to concerning, or they would have us back right away...and they are not.
We are planning an overnight in CT next week, going to see my family, and also some of my closest P2P friends ( my support group over the last three years)...and one friend who has been my life line for quite sometime...Karen...I can not believe that I finally get meet her and Ethan, of course Alan her husband and their 3 other kids...after all these years, they are from Cananda...and they are coming to CT for an overnight. Of course I get to see Cathy, Tommy and the boys...it has been since last Dec that I saw the boys...got to see Cathy for a concert in March...so this is great too. This will be a nice overnight for sure.
Also Dr Rosen, Jake's angel of a GI, had her baby last Saturday, another BOY...and all is doing well. She will not be back until late Nov, early December...so we see Dr Nurko on Sept 7th ( also Cathy and Tommy will be there with Jacen for a pretty extentsive motiltiy test. Similiar to Jake's test, but Jacen's deal with his large colon. So I am hoping Jake will be able to bring his chipmunk cheeks some smiles for her that day.
Also kids getting ready for school...Sept 5th...ohh I am now getting nervous for Jake...althought, we MAY...MAY be able to have him go to school with out his feeds...it will be 4 hours off the pump...so this will be something I will ask Dr N when we see on the 7th...if he gives us the OK, this will be the best thing for Jake...he really needs this.
So that is it for now...and I will update again soon...Thanks to all his preschool friends that have been there for him ( the moms too, for me, your girls are AWESOME) and to everyone else who contiuned to keep Mr Jake in their thoughts in prayers...he really is one heck of a kid...he drives me crazy cause he is your average 5.5 year old boy, but God does he bring me so much love and smiles when I see his face.
Until Next time
Christine
Saturday, August 12, 2006 9:50 AM CDT
YEAH...We are HOME!!!
We got home around 8pm last night...We did end up seeing pain clinic, but what a freaken mess...talk about how everything gets messed up when the Drs are not even on the same page.. , and when your GI is FINALLY in the hospital having her baby... Yes, Dr R was in the hospital as of yesterday...so fingers crossed that they by now that she had the baby..
Apparently pain came to see Jake when we were down talking with the Drs from the Medical coping clinic...Put it this way, the pain Dr did not tell our NP, Julia, that she was even there, or that she saw Jake, she just told some residient, that I do not even think was on the GI team...so NO ONE realized that she was there...Not even our nurse... So we did not get to ask questions...we just now have to wait and call and make another appt... She was nice enough to up Jake's Neurontion...
So he is still vomiting, BUT it has got a little better since we have to 12 hour g-tube draining(gravity)...So he gets his feeds at a rate of 60, (3 boxs of formula, he needs only 2.5 box, 3 for coverage) and 200ml's of water...at the end of the day, I have to measure the stomach output and whatever that may be throughout the day...say 3250ml's, than I add 325ml's of pedylite to his feeds and water overnight. At night we turn the draining of the g-tube off, since he seems to be doing fine at night... (we are still trying to understand that one) We did end up making a really neat draning contraption from a 24 hour pedi urine collection bag...He did have this HUGE leg urine bag hooked to him....so this is nice and discret, and he can wear it going out and besides a little bump from the bag, that is all you see...so he will be able to wear it to school like this. I will have to take a pic...cause I am very impressed with the idea myself... Now I just need to get the HHC people to cover the bags for us.
He is at 60 for 22 hours right now...So if the next couple of weeks, he starts to do well with his feed rate, than we can slowly bump his rate back up, and the goal would be to have him off the pump during the day for 4 hours...so he maybe able to go to school WITHOUT his feeds....
He is on new meds...Zelnorm 6mg 2xs a day, prilosec 18mg 2xs a day, Zofran 2mg every 8 hours, Neurontin is 4ml's (200mg) in the morning, and 6ml (300mg) at night, and his Bactrium, which we are not back to the first 5 days of everymonth...and than his flovent 2xs a day. They did tell us that in a week if we do not see a change with Jake, than chances are the Zelnorm is not going to work, so we may be able to revist going back to the prolusid, on a higher doses since his weight is up...I think his last weight was 38 pounds... I still shock myself when I see 38 pounds.. I LOVE IT. Althought Jake is not going poop as much as he did...Dr R thought that they Zelnorm would give him diarreah really bad...but he has been going every two days, now it has been three days...so we will see how that plays out.
Well, I hope things start to get better for him...I just feel so bad cause the vomiting is so violient...I think that is the hardest part to see out of all of this...and the smell of blood... OMG...I will not even go there... It is not bad, but it is there..We have to go every week for bloodwork...at our peds for this...and than we will see Dr N in 3 weeks...that is if the vomiting and all stay the same...if anything gets worse, or other issues arise, than we will see him sooner...but for now, we will just hang tight.
Again...thanks for all the good thoughts Jake's way...
Thursday, August 10, 2006 10:48 PM CDT
I am doing a quick update...please excuse any run on sentences or miss spelled words and I am very tired...and can't wait to sleep in my own bed tonight...Kevin is with Jake tonight.
So as the story contiunes, he is still vomiting...there is blood, but nothing that they are too concerned about at this point...he is on the IV protonixs, so that should help...He is still on the zofran with not any success...although he will go home with it if we want to contiune to use it. He just got his thrid dose of the Zelnorm tonight...so maybe there will be a difference tomorrow...they told after the third does some of the kids start to show some improvement with vomiting.
Today we were suppose to have our 2pm pain team appt...but they drs told us that they were going to come see us instead, so not to worry and that we did not have to try to lug Jake and all the stuff across the street to their office...but as of 8:30pm tonight when I left, there was still no sign of the pain team..
Jake also had a CT scan of his head this afternoon...we have not heard anything, so we assume all looked well...also most of his bloodwork looks good...liver is slighltly elevated and his magnesium level was slightly elevated as well, but not a cause for concern as of yet. We have found he is doing somewhat better being vented...so he has this HUGE urine leg bag strapped around him that all the bile is going into...we just need to replace with pedilyte thru his j-tube what comes out in bile.
So that is pretty much it...kinda sucks this admit did not go as planned...they all thought pumping him with IV fluids and Zofran would really make him feel better...but nothing really changed as of yet. So we will be coming home tomorrow evening sometime...and than follow up on Monday...Again...Thanks for the contiuned thoughts and prayers for Jake
Take Care
Christine
Thursday, August 10, 2006 10:58 AM CDT
Well we got to the ER around 8 yesterday morning, thankfully we did not have to wait long, no one was there...that is a first....Jake was sick most of the day, and when we got up to the floor, he started vomiting up brown, which they said looked like "old blood", and than he started vomiting up bright red blood...
He is on IV zofran, and protonics thru IV, passed the EKG and hopefully will be starting Zelnorm tonight...They are going to start him off at the higher of the two doses they give since he just can not stop puking.
Dr R is still here...poor woman, she said she thought she was going to go on Monday, she had contractions and was dialieted, but here she still is.
Our plan is to still get out of here by Friday, and go home with zofran..so that should help...if the blood gets worse than they will address it more, but for now, they said they are not to surprised, with all the hard vomiting of bile. Plus they are doing what they would be doing anyway as far as meds go.
Hannah is coming up in a while with Kev...so hopefully that will make him feel better. He has been sick most of today...Kev will be spending the night with Jake tonight and I will go home with Hannah.
I will update again soon...Please just pray that Jake can stop this vomiting.
Until Next Time
Christine
Tuesday, August 8, 2006 9:15 PM CDT
Jake had an UGI study today to look at his feeding sites..make sure there was no clear cut reason to why he is vomiting so much, but all looked well in that area, but
after talking with Dr R this evening, we have all decided to admit Jake tomorrow morning.
During the UGI today when he vomited, the Dr thought there could have been dried blood in the vomit..specs...I did not even give it a second look...but we saw the same thing on Saturday too...Kev even thought at one point it looked like fecal matter..cause the bile was so brown. But blood work and weight looked good, everyone seemed fine with that than, but now she is more concerend cause it happened again.
So she felt if they got him back into the hospital, they can test the vomit again, and they can also start IV fluids and give him Zofran at the same time. His vomiting has become so violent...his eyes are even bloodshot from how hard he has been vomiting...
Now that he is off the proplusid, we can try some new meds. She did mention Zelnorm...although I want to talk to Dr N a little bit more about that, he also need more blood work and the EKG cause he stopped the proplusid, they can get pain team in right away, and also get a behavior therapist (which could take months if we were out patient) into see him as well and try to see what we can do about trying to eat by mouth again.
Depending on how the vomit looks (I know gross) tomorrow thru Friday and they do not discover any other issues such as a GI bleed, ..than we will just be there until Friday. We know that the vomiting may never fully stop, but if we can even decrease it enough where he can function like he use when he vomited, than we would feel much better about him getting ready for school...Right now, we cannot go anywhere, with him crying in pain or puking.
So I just wanted to update quickly..and please continue to keep Jakers in your thoughts over the next couple of days..
Take Care
Christine and Jake
Friday, August 4, 2006 6:50 PM CDT
Well Jake has been going on 3 weeks with nothing to eat and very little to drink by mouth, and yet he still contiunes to vomit all day long.
We are having blood work done right now to check his electrolytes so Kev took him into urgent care (Our Peds).
I think it is the Phrousphers(sp)levels they want to check...he had a problem with these while he was in the hospital, Dr R concerns at that time was he was getting to many calories at once...which still one our concerns too.
Also they will do a quick weight check, and I think if they like his weight gain, which they should, we maybe able to either go down on the rate, or get more than 2 hours off the pump during the day. At this point our main concern is the constiant vomiting of bile and retching...even when vented he is still bringing it up..I did not think one could make soo much of this stuff so quick
Please say a pray for him that this will hopefully end soon subside or that they can figure out something to do for him...We start school in 4 weeks and he can not go like this..
Thank you all....
Christine
Thursday, July 27, 2006 9:01 AM CDT
Just wanted to add a quick up on Jake. He is doing good weight wise on his feeds, he even looks a little chubby. He still has not had anything to eat or drink...which is still hard. He is still having bouts of vomiting, and uncomfortable in his belly area.
He has been able to do ok on a rate of 75, so he is able to have the pack off for 2 hours during the day...so where else would Jake be...The Pool!
We don't go back to the Drs again for 3 weeks, which at that time if he still have not eaten any food, than we need to think about behavioral therapy for him...would like to get this all fixed before school starts.
Well, that is all to really update at this point. Thank you all for your continued thoughts and prayers over these last couple of weeks.
Take Care
Christine
Monday, July 24, 2006 9:33 AM CDT
Sorry I did not update a little sooner, by the time Kev got home with him yesterday, it was 2:30 and he was still not feeling well, BUT doing alot better now that he is home for sure. He is still vomiting, but not as much, thank goodness...and he has still not had anything to eat. He did take some sips of water after a vomit, and did put a piece of bubble gum in his mouth for about 10 mins before he had to spit it out...so we are making some headways there for sure.
As of right now, the plan is for Jake to be on 24 hour feeds at a rate of 60 until we see Rosen on Tuesday (which he has been on since yesterday afternoon, still vomiting the same, and still sleeping the night... so not so sure it is a volume issue as it could be a "mental" issue)
I use that lightly with this cause he is not doing the vomiting on purpose, and he is not making himself vomit, as he does have medical issues that is vomiting as an main issue, but it is one of those " don't give TOOO much attention too" when he is doing it, and when he says he does not feel good, we say to him now
" your going to be fine, can you tell me what is "green" around the room"...direct his attention else where, and sometimes it works, other times it does not and he still gets sick anyway.
We are not pushing anything by mouth on him at all at this point, we think when he is ready he will ask us, as he did with the gum and the sips of water...so time will tell.
I also will be an interesting night being home, since the marjority of hospital stay was weight, it was also trying to help us with his feeding and waking issues at night..something they did not have to do cause he sleep every night he was there with no problems...so I wonder how much of the night wakenings before were just a learned behavior...so tonight will be interesting to say the least.
Thank you all for you contiune thoughts and prayers for Jake.
Take Care
Christine
Saturday, July 22, 2006 10:32 PM CDT
Uhh I just sat here and wrote out an entery and I clicked the wrong button and lost it all...so this will be the short short
As of tonight Jake is still in the hospital. He has been vomiting everyday, all day since we have got in there...Kev has been spending the last two nights with him as I have not been feeling well myself...and pretty mentally shot with all this to begin with, so it is nice to have him stepping in at this point.
Jake should be home tomorrow morning...we think there is a good plan in place and since we go back on Tuesday to see the DR...it will be ok to leave. We also think some of this vomiting has to do with where he is...kinda like a mental thing...he has barley got out of bed since we got there cause he feels like he is going to vomit. When we finally do get him up and around, he will have a 20 min period of being silly and happy and than to vomiting...than it takes even longer to get him back up again...as most of you know Jake is a very active child...so for him to just "laying" around has got to get to him after a while. Plus he misses Hannah sooo much. She came up with my parents the other night and with me for much of the afternoon...and while he still got sick, he did have periods of being happy.
So I will update when he is home...fingers crossed for tomorrow!!!
Thanks for all your thoughts and prayers...and Shannon and Sammie...Thank you girls SOOOO much for coming up to see us, and not to mention the gifts that were sent from different people ( you know who you are...THANK YOU)
Take Care
Christine
Wednesday, July 19, 2006 9:57 AM CDT
Well it is Wed morning around 11 am and I am already to go home. We got here yesterday around 3pm, we were able to spend sometime with Dr R and talk which was good. Jake was very unhappy that he was even here...but so far he is doing ok...soo much fun stuff for him I think.
He had a great night ( unlike mom, who slept all of 2 hours, we have a newborn with no parents, and all this poor baby did was cry) Jake slept thru the night with no problems, and all hit this morning. Right before getting into the shower he started to vomit...and so far everything he has put in his mouth has come right back up. The worst part about all of this is that generally he is better at home, only vomits at night, thanks to the proplusid...and he eats more at home that he has here...which I kinda knew.
The worst part was he started vomiting as we were down in the coffee shop for all to see...Thankfully I had the basin and washcloth to cover him. But he still contiunes to move on and act as though nothing has happened.
We have yet to see the "rounds" drs so still not sure if they are even going to increase his rate at this point...they may infact increase his pain med...but again, we have not heard any word yet.
Kev will be coming in and spending the night with Jake, so I will go home tonight and stay with Hannah...than we are off to a movie tomorrow morning before I come back up here.
On a side note...I was finally able to meet Kelly and Miss sweet Ali (Banannamom) and right next to her was Miss Paulina...I am sure some of you remember her and her father. I am hoping to get back to see Kelly soon and go for a coffee and talk...but because of Jake this morning, that kinda put it on hold...but we may head down there after lunch.
Well thanks for keeping Jake in your thoughts....and I will update more when I get home tonight.
Monday, July 17, 2006 11:33 AM CDT
Just wanted to let everyone know that Jake will going into the hospital tomorrow instead of today...Thanks for the contiuned thoughts and prayers for him.
Please check back often for the updates!!
Take Care
Christine
Monday, July 10, 2006 8:13 PM CDT
Jake had his weight check at Childrens' on Thrusday and it was not a great day. In a nutshell Jake lost 3 ounces as of 6/20 from the peds scale and 3 ounces at the GI's scale...I have finally decided that I need to let them work with him at this weight...his weight is 29.3 ounces...I am so sad and not to mention I feel I failed Jake so bad on this...He will be admitted on Monday the 17th for about 4 days...at right now they do not feel his vomiting is an issue, and with him being on 24 hour feeds (almost 2500 calories a day from just tube feeds, that does not include what he eats by mouth) that something else is going on.
He was very bloated during the visit...which I told her this happens when we bring the rate up...and she feels at least in the hospital the pain clinic can get involved...she also wants urology (sp) to see him as well since we are still having the ning ning ( his pee pee) problem...with CIPO the nerves in that area can be affected, and this has gone on for almost two years now. Also he see ENT on the 13th, and with one tube out and one tube just hanging in there, and not to mention he has fluid build up with a bulging ear drum on his right side (the one with no tube) she thinks that ENT may want to put a set (this would be his 3rd set) of ear tubes in again since this EI thing has gone on too long.
The one thing that bothered me the most with all of this was about 6 months ago when I told here that for some reason I do not think the rate is going to make a difference, she said " I don't see why he won't gain with a rate increase", and today when I said, this was my fear, she said she agreed.. before you told me that you saw no reason for him to not gain...
On a side note...a funny for the day. Jake had my Ipod, and as Dr R asked him what he was listening too, he YELLS out " I WANT ACTION TONIGHT" ( that is from the 80's group "'POSION"...and than proceeds to say that " Girls Girls Girls "Motley Crue" is next".... I had to explain that I am like the 80's hairbands and they happen to be on my Ipod...she could not stop laughing...again, only my child.
On the J-tube issue...we did get a smaller button...I think a 1.2, they faxed it in to my HHC place for me...but she told me that her pts that have separate J's are having nothing but problems with them, and she says she uses Jake as her explain of a perfect J-tube site..." Leave it alone and don't mess with it"... That is what I tell her when she use to ask me why his was so perfect, what was I doing...That made me feel good.
So please keep Jakers in your thoughts on Monday the 17th...I hope if anything comes out of this, we will find a way for him to tolerate his feeds.
Again Thank you and I will update more often when we are in the hospital as I am sure Jake and I will have some time...so please keep a look out for some good updates.
Until next time
Christine and Jake
Monday, July 10, 2006 8:13 PM CDT
I just want to make this quick as it was not a great day. In a nutshell Jake lost 3 ounces as of 6/20 from the peds scale and 3 ounces at the GI's scale...I have finally decided that I need to let them work with him at this weight...his weight is 29.3 ounces...I am so sad and not to mention I feel I failed Jake so bad on this...He will be admitted on Monday the 17th for about 4 days...at right now they do not feel his vomiting is an issue, and with him being on 24 hour feeds (almost 2500 calories a day from just tube feeds, that does not include what he eats by mouth) that something else is going on.
He was very bloated during the visit...which I told her this happens when we bring the rate up...and she feels at least in the hospital the pain clinic can get involved...she also wants urology (sp) to see him as well since we are still having the ning ning ( his pee pee) problem...with CIPO the nerves in that area can be affected, and this has gone on for almost two years now. Also he see ENT on the 13th, and with one tube out and one tube just hanging in there, and not to mention he has fluid build up with a bulging ear drum on his right side (the one with no tube) she thinks that ENT may want to put a set (this would be his 3rd set) of ear tubes in again since this EI thing has gone on too long.
The one thing that bothered me the most with all of this was about 6 months ago when I told here that for some reason I do not think the rate is going to make a difference, she said " I don't see why he won't gain with a rate increase", and today when I said, this was my fear, she said she agreed.. before you told me that you saw no reason for him to not gain...
On a side note...a funny for the day. Jake had my Ipod, and as Dr R asked him what he was listening too, he YELLS out " I WANT ACTION TONIGHT" ( that is from the 80's group "'POSION"...and than proceeds to say that " Girls Girls Girls "Motley Crue" is next".... I had to explain that I am like the 80's hairbands and they happen to be on my Ipod...she could not stop laughing...again, only my child.
On the J-tube issue...we did get a smaller button...I think a 1.2, they faxed it in to my HHC place for me...but she told me that her pts that have separate J's are having nothing but problems with them, and she says she uses Jake as her explain of a perfect J-tube site..." Leave it alone and don't mess with it"... That is what I tell her when she use to ask me why his was so perfect, what was I doing...That made me feel good.
So please keep Jakers in your thoughts on Monday the 17th...I hope if anything comes out of this, we will find a way for him to tolerate his feeds.
Again Thank you and I will update more often when we are in the hospital as I am sure Jake and I will have some time...so please keep a look out for some good updates.
Until next time
Christine and Jake
Tuesday, June 20, 2006 9:04 PM CDT
Wow, I have not done an update in ages...so sorry.
Well I have some good news about Jake...his probe showed no reflux..well acutally just one eposiode...so in a nutshell, reflux is not an issue for us anymore...To be able to wipe that off our plate is a good thing.
I have some not so good news about Jake too...Jake had his monthly weight check today at the peds...and let's just say that Jake won't be doing to much swimming this summer, he won't be doing much of anything unless he has his pump on...he lost 10 ounces...
I am sooooo sadden by this weight issue that I am just at a total lose, the summer has not ever started and the child already lost 10 ounces
I don't understand why this child can not gain weight...and now just as he was starting to gain, he is back to loosing again..
So now I just have to wait till out July 7th appt with Dr R and wait to see what she says...but for the time being the pump is staying on, and I am going to start to increase his pump 1ml every hour....I know we talked about doing that if he did lose any last month...so I am just going to start it now...and try to keep the feeds going thru the night, without turning it off or slowlying it done...cause I can't keep going thru this every month.
I am also waiting to hear if it is ok to start Serevent with Jake...we know his cough is not reflux related anymore, so we are going to treat it as asthma and see if that works...just waiting for Dr N to let my peds know if it is ok to give with the proplusid, since Advair is on the list, and the severent is in that.
And to top the appt off...during Jake's eye test..Hannah had gum in mouth that she somehow managed to get in her hair.... so the nurse was nice enough to take her out of the room ( as Jake was going to get his two shots) and try to get the gum out of her hair without having to cut her hair...so 5 mins later, we are getting ready to walk out the door, and a nurse sticks her head in the door and says " your daughter is throwing up"...how did getting gum out of her hair turn into her puking...
The first thing out of my mouth was did she blood or any needles...cause she does vomit when she see's blood ( alot of blood) or any needles...they said nope, as they were walking her into the room, she was pale and her lips were white...they sat her down in the chair and before I knew it, she had passed out...the ped came running back in and within secs she was awake...still sweating, now almost white as chalk and her lips were white...they gave her o2 and had her lay down...she puked a two more times and another 40 mins later she walked out like nothing happened.
Needless to say we have to go back in by Friday if she vomits again....she has been complaining about her eyes and the colors that flash in front of her...so they are thinking that this might have had something to do with it.
Ohhh and since it has been a long time that I updated, Hannah had fallen a couple of weeks ago when she was playing around with Jake and she hurt her foot...well a week after the first looked at it and said it looks like a tiny tiny hairline fracture, and in time she will feel better, well a week later, they found out she that the fracture got bigger and now the poor child is in a cast up to the botton of her kneen...It does come off on the 27th of this month...if we can get it to keep dry. But since it is a hot pink cast...she is ok with it.
Until next time
Christine and Jake
Thursday, June 1, 2006 7:20 AM CDT
Quick update, Jake had the Impedance probe placed on Tuesday, he did really well. We were able to come home, which was a plus, and than we went back yesterday to have it removed.
This test is to see if Jake is still having reflux and/or non reflux problems still. Regardless of what the test comes back with, nothing will be done...if it is reflux, we may start to change reflux meds, but that would be it.
So it should be a couple of weeks until I hear anything. Until than Jake goes back to the peds at the end of the month for a weight check, and than back to Children's in the beginning of July to see Dr Rosen.
So until next time
Christine
Friday, May 26, 2006 7:22 AM CDT
A quick update!!
I got a call the other day with a cancellation, so Jake will be having the Impedance probe placed on Tuesday afternoon, this will stay in for the 24 hours and than be removed the next day.
We are choosing to take Jake home with us. With this probe, he can contiune doing all his daiyl things, and I want to make sure that he can. He just will not be able to go to Gymnastics on Tuesday. But I also wanted him to attend his last day of preschool on Wed.
This test will show if he is still have reflux issues, or if stomach contents, acid or not is coming up past his fundo and causing him coughing and night waking eposides.
We will not know the results for a week later.
The other day at the peds he did gain, only a couple of oz's but it is still a gain.
Will keep you posted as we learn more.
Until Next Time
Christine
Sunday, May 21, 2006 7:04 PM CDT
I am just doing quick update...although no news on any testing yet, still waiting.
I wanted to post that today we celebrated my grandparents 60th wedding anniversary. It was a great time to have my whole family together. The last time we were able to all be together was Christmas, so this was nice. Also my grandparents, aunts and uncles also meet our newest addition Julie for the first time...who is now 6 weeks old...She is a sweetie.
I also want to say a very special thank you to Louise...Over the years you have done so much for us, and I wish I could repay for everything...We love you very much!!
And again...Happy 60th Wedding Anniversary to my grandparents.
Take Care
Christine
Friday, May 12, 2006 3:08 PM CDT
I am sorry...I can thought I put an update in here after his GI appt, but I was told that there was no update.
Well so far Jake gained, so they are happy with that. We are still on our formula, which is good, and we go to the peds on the 23rd for a weight check. They would like to see him gain 4 ounces in a month, and if does than we are making progress, if he doesn't than we are going to work on increasing the rate of his pump during the day, and see if that helps, if he can either not tolerate it or he still is struggling to gain, than they want to play around with formulas. As of right now he will be having the impedance probe done at the end of June, nothing will really be done except a med change if he is infact refluxing.
So that is all for now...working hard to get his medical plan ready for next year...He is so excitied about going to Kindergarten.
I will update when I get anymore information.
Thanks again
Christine
Friday, April 21, 2006 8:02 AM CDT
After two long months, I finally took Jake to the peds office yesterday to get a weight...and for the first time in over a year, he gained 14 ounces...so a little under a pound in two months...
I spoke with Dr Rosen yesterday who wanted to weight ASAP, for insurance reason's, if he did not gain by Thursday, they want to admit him and play around with his formula's...and since he start the resource 1.5, I have not had him weighted. She also broke the news to me, and I have to call this morning and check on it, that either it was my insurance or the HHC, she did not remember which one, will not longer be paying or getting the resource 1.5, so he has to go to Nutren Jr 1.5, which is the same calorie wise, but is the same a pedisure, which he did horrible on...so now I have to go deal with that mess.
We are waiting for endoscopey to call and schedule the impedance probe, it won't be done until June or so...but she did say if we do admit him, than it could be done sooner. Also we can get pain clinic on board at the hospital and not have to wait either. Still waiting for the pain team to tell us if we can increase his neurontion.
Yesterday my peds said he thinks we should let the Drs observe him...and while we do want them to see our night time hell...we are just not sure if right now would be helpful, and plus he has gained. It also makes it that much harder to admit him when we already know that there is not to much that they can do for him anyway, so I feel like we would be wasting everyone's time and a bed...KWIM...I know sounds dumb..
So right now...I just have to wait to see what she says on Thursday, but I think she is going to be happy with the gain, and I think we are going to get the green light that we will not have to be admitted.
So here to Jake and a 14 ounce gain...His grand total is 29.9 pounds... Do I hear 30 pounds heading our way soon!!!
Thanks for reading
Christine
Saturday, April 8, 2006 8:16 AM CDT
Wow...it has been a couple of days since we have welcomed newest family member....My sister and her husband gave birth to a beautiful baby GIRL...on April 6th, at 12:20am.
Julie Susanne weights in at 6lbs, 15 ounces and 18 inches long. She is so beautiful...and looks just like her big sister Alison did when she born. Everyone is doing well and they should be coming home today from the hospital.
As for Jake, we are just waiting for his GI to come back from vacation...so we should hear from by next week...and than I will update as to what we are doing next.
Until Next time
Christine
Thursday, March 30, 2006 8:43 AM CST
First I wanted to add, that we are patiently awaiting the arrival of our newest addition into the family.
Please keep my sister and her husband in your thoughts over the next couple of days as they await the birth of their second child. We do not know if the baby is a boy or girl, even though I am completly conveinced it is a boy..:)
Ok on to Jake...I don't even know where to begin, cause in all honesty I am not even sure Dr R really understood that test...From this test, Jake is basically getting MORE calories than he needs in a day....so he should have been gaining weight on the Neocate.
Sounds well in good, but the fact remains, he is not gaining, and I do not know what else to do. At first when I called to get the results, I spoke with K, her secretary, and she said she gave Dr R the message, and that the only apt they have for her to see Jake again is April 27th...Are you kidding me....and the ONLY reason why I felt this time frame to be unacceptable is because three weeks ago, they were so concerned with his weight, that they wanted to take food by mouth away...( drastic move for Jake) and now all of a sudden, it is like, we will see you in another month....again, this was before she even knew the results of the test..
Well thanks to my "friend" , I have learned to not take crap anymore, and I told K to let Dr R know that I think this apt time is unacceptable. Within 20 mins Dr R is calling me....( I think I am learning the secret behind this) We discussed the results, and than we talked about how he is doing now. I told her that he is still waking up at night, with the belly pain, and all that, I brought up to her about this horrific cough he has been having now for a couple of months...and it is really starting to scare Kev and I...we feel we are right back were we were before Jake had the fundo done...Not a good thing
She talked to me again about the impedance probe and if we felt doing this with Jake was a good thing, she did say that she does not like doing this if she does not have too, it is an uncomfortbale test...Here I am thinking, with all the other crap this child has had to go thru, placing a probe is the last thing I would even think about being invasive for him ...But again, it comes back to regardless what it says, it really does not change his course of treatment....she did agree somewhat, but did they only thing we could is redo the fundo, she than said, I assume this is something that would not do. I said your right, there will be no redo of a fundo what so ever.
She still wanted to sit with Kev and talk to him about doing this probe...we may have to start treating his reflux,( IF infact this is what he is having problems with again), more aggressively than we are, which would mean there is a chance he could have to come off the proplusid....If that is the case, than having the probe done is something that we may think off, cause taking Jake off proplusid is a BIG deal....Big deal, we would not take him off it unless, we had 100% proof that this is once again reflux related.
So as of right now, we just have to make it down to the hospital next week to get just a weight on him, and than we keep our apt for the 27th...She is going on vacation, along with the nutrionist...so that is where the 27th comes into play. I also have to call the pain clinic and see if we have any room to adjust his neurontin.
This whole thing is just frustrating, I feel like we are back to square one again with everything..
Thursday, March 30, 2006 8:43 AM CST
First I wanted to add, that we are patiently awaiting the arrival of our newest addition into the family.
Please keep my sister and her husband in your thoughts over the next couple of days as they await the birth of their second child. We do not know if the baby is a boy or girl, even though I am completly conveinced it is a boy..:)
Ok on to Jake...I don't even know where to begin, cause in all honesty I am not even sure Dr R really understood that test...From this test, Jake is basically getting MORE calories than he needs in a day....so he should have been gaining weight on the Neocate.
Sounds well in good, but the fact remains, he is not gaining, and I do not know what else to do. At first when I called to get the results, I spoke with K, her secretary, and she said she gave Dr R the message, and that the only apt they have for her to see Jake again is April 27th...Are you kidding me....and the ONLY reason why I felt this time frame to be unacceptable is because three weeks ago, they were so concerned with his weight, that they wanted to take food by mouth away...( drastic move for Jake) and now all of a sudden, it is like, we will see you in another month....again, this was before she even knew the results of the test..
Well thanks to my "friend" , I have learned to not take crap anymore, and I told K to let Dr R know that I think this apt time is unacceptable. Within 20 mins Dr R is calling me....( I think I am learning the secret behind this) We discussed the results, and than we talked about how he is doing now. I told her that he is still waking up at night, with the belly pain, and all that, I brought up to her about this horrific cough he has been having now for a couple of months...and it is really starting to scare Kev and I...we feel we are right back were we were before Jake had the fundo done...Not a good thing
She talked to me again about the impedance probe and if we felt doing this with Jake was a good thing, she did say that she does not like doing this if she does not have too, it is an uncomfortbale test...Here I am thinking, with all the other crap this child has had to go thru, placing a probe is the last thing I would even think about being invasive for him ...But again, it comes back to regardless what it says, it really does not change his course of treatment....she did agree somewhat, but did they only thing we could is redo the fundo, she than said, I assume this is something that would not do. I said your right, there will be no redo of a fundo what so ever.
She still wanted to sit with Kev and talk to him about doing this probe...we may have to start treating his reflux,( IF infact this is what he is having problems with again), more aggressively than we are, which would mean there is a chance he could have to come off the proplusid....If that is the case, than having the probe done is something that we may think off, cause taking Jake off proplusid is a BIG deal....Big deal, we would not take him off it unless, we had 100% proof that this is once again reflux related.
So as of right now, we just have to make it down to the hospital next week to get just a weight on him, and than we keep our apt for the 27th...She is going on vacation, along with the nutrionist...so that is where the 27th comes into play. I also have to call the pain clinic and see if we have any room to adjust his neurontin.
This whole thing is just frustrating, I feel like we are back to square one again with everything..
Saturday, March 25, 2006 7:06 PM CST
Thanks to those of you that emailed me asking where the update was, I realized that the entry I thought I posted here on last night did not take I guess, Thankfully I copy and pasted what I thought I posted here to my support board ...so here was how Friday went....
Well, today Jake had the Indirect calorimetry test this morning. He did a really good job, considering he had to lay flat for 30 mins with this weird plastic bubble over his head...It reminded me of an astronauts space suite, but it was just the head part. Jake thought it was really cool, and we even pretended he was an astronaut, and he got to watch some of his favorite movie, "The Incredibles" . We won't know anything until next week. We are hoping to get an apt for next week, but since we would like everyone there, it might take longer, but we shall see.
So either they will come back saying he is burning calories normally, or he is burning his calories to fast, or faster than normal....We are not sure what we want the test to show...Most of me wants it come back normal, but there is just a tiny part of me that wants it show that he is using more calories than he getting...at least that would explain why he is not gaining...ahhh the whole thing is just frustrating, but I think we are learning that Jake's problems are going to be "steps" so to speak, like a process.
As for his flu...he had no fever today, which was good, at night, when your temp goes up anyway, he has a slight one, but he still has that nasty nasty cough...so we make it anywhere from 10pm to 11:30pm and he is up, coughing, crying, pain in his belly...the whole nine yards..and that is the hardest part cause I think the Neurontin is working...but with the flu, it has been hard to say, so hopefully he is on the mend with that and will start going back to normal.
Soon as I hear the results I will do an update....so until than, thank you for your thinking of Jakers.
Tuesday, March 21, 2006 8:55 AM CST
Just want to do a quick update on Jake. The pain clinic was the best thing we could have done for Jake. He is currently on the Neurontin 2 times a day, and we thought he was doing really good, but than Jakers came down with the flu...Yep...the flu. Poor Jake has been sick with a high fever, a horrible cough and stuffy nose.
Jake also goes to Children's Hospital for a test called Indirect Calorimetry test, this test assesses energy expenditure using computerized system where the patient lies under a clear hood so the expired CO2 is collected and analyzed. So this should tell us what he is burning and using for calories a day...might help explain the weight gain problems.
As of right now, we are not going to do any admission, the pain team Drs. also felt that taking food away by mouth right now is not in his best interest. That was good to hear.
So that is really all to update right now. We do have a GI apt tomorrow, but I want to cancel it and reschedule it for next week so we can sit and talk about the results of the Calorimetery test. Just waiting for that call back.
Please think of Jake on Friday, and I know we will be praying that with this test, they will be able to see WHY he is struggling to get weight on. I know it is always nice to say "everything looks good," but we are all stumped on why he cannot gain...so hopefully this test will help us determine that.
Until Next Time
Christine
Tuesday, March 21, 2006 8:55 AM CST
First would like to wish my sweet Hannah a Happy 7th Birthday today!!
Just want to do a quick update on Jake. The pain clinic was the best thing we could have done for Jake. He is currently on the Neurontin 2 times a day, and we thought he was doing really good, but than Jakers came down with the flu...Yep...the flu. Poor Jake has been sick with a high fever, a horrible cough and stuffy nose.
Jake also goes to Children's Hospital for a test called Indirect Calorimetry test, this test assesses energy expenditure using computerized system where the patient lies under a clear hood so the expired CO2 is collected and analyzed. So this should tell us what he is burning and using for calories a day...might help explain the weight gain problems.
As of right now, we are not going to do any admission, the pain team Drs. also felt that taking food away by mouth right now is not in his best interest. That was good to hear.
So that is really all to update right now. We do have a GI apt tomorrow, but I want to cancel it and reschedule it for next week so we can sit and talk about the results of the Calorimetery test. Just waiting for that call back.
Please think of Jake on Friday, and I know we will be praying that with this test, they will be able to see WHY he is struggling to get weight on. I know it is always nice to say "everything looks good," but we are all stumped on why he cannot gain...so hopefully this test will help us determine that.
Until Next Time
Christine
Saturday, March 11, 2006 9:58 AM CST
Again I am sorry...nothing new with me updating his appts in a timely manner.
Well we had our Pain clinic appt in Tuesday and I have to say so far this year this really was the best choice we have made in Jake's care. They were wonderful and they were really surprised themselves that it has taken this long to get Jake over the pain clinic considering his neuropathy issues. So I knew I was making the right choice by keeping this appt.
Most of it was a lot of talking...Jake's past history, and medical problems. His surgery's played a huge role in a lot of this...again not to surprising.
He saw three people during this interview, A medical Dr, the neurologist, a PT (physical therapist) and a psychologist. This is a mandatory for all new pts. We were told that Jake was not their norm for pts. Most of them where older kids that suffered pain from problems such as Orthopedics surgery's and surgery's that require a lot of time to heal, and in some cases they never really heal properly, which in tail turns in to chronic pain that can no be dealt with the OTC Tylenol or Advil, so they need some more controlled help with the pain.
Well Jake did not need any part of PT....Jake was out in the hallway showing the therapist that he can do splits...I have never seen someone laugh so hard, but be so shocked that all he has been going thru still manages to be able to be a very active 5 year old.
After a one hour lunch we went back to see just the Dr and psychologist (Jake did not PT to be part of his pain issues) They both felt addressing the pain issues that he could be having at night ( and I say night cause he never tells us what is the matter, he just screams and cry's for sometimes hours until the feeds are finally shut off and his belly bloating slowly goes down) So she wanted to try Nerurontion, which a lot of people with either nerve damage, nerve pain use. They also wanted to do a combo of the anti depressant called Amitriplyine, this med also works wonders for pain related to severe stomach issues. Unfortunately this med can no be used in conjunction with the proplusid/cisipride, so right now we are just using the Neruontion. He is on a low does right now (1ml) once a day at bedtime for the first 5 days and than move the dose up (2ml) twice a day, morning and night.
He started it on Thursday due to having to have it made for us cause we had to get it into liquid form, everyone has pill form. The one question I did ask both of them at this meeting on Tuesday was after meeting Jake, and hearing his history, do they feel that food away by mouth at this time is in Jake's best interest, they both said NO.
They also spent time explaining to us why, and spent a lot of time reassuring us that we have done a pretty good job on keeping Jake's life as " normal" ( I hate that word normal) as possible, which means, we do not live/thrive on his medical problems, we rarely remind him that he can no do this cause of this or he can not do this cause of that, which has been our plan all along. I am a firm believer in if you "live" or use your child's medical issues as a way of life ( and with this I am talking motility issues such as Jake's), not only are you going to have a lot of stress and anxiety issues as the parents, but your child will sense all of this and will someday use it as a way "out:, as they explained to us. Again with Jake being %5 years old, it made perfect sense.
So it was good to hear (again) that we as his parents do not overly obsessive or worry over little ache, pain, vomit or his tube feeds and is a good thing for all of us but with the understanding that we are still aware that he does have some serious dx's and medical problems going on.
We were also assured that as he gets older, there is a great chance that things will slowly go back to normal. She said as puberty hits with some of these kids that their pain slowly goes away, they are able to eat food without pain, and eventually the tubes are slowly weaned. We knew this from what Dr R and Dr N has told us in the past. That is very reassuring to hear as well.
We also switched his formula last week to a higher volume/calorie formula and so far he is doing no different or no worse. They were afraid cause most kids like Jake and that are J-tube feed have a harder time tolerating this kind of formula, and so far she has not got worse from it. I guess only time will tell.
We did agree that by the first week in May, if Jake is still having night pain issues with feeds, and not gaining weight, than I am all for admitting him and letting Dr R ( those first two weeks in May are her weeks up on the floor) and the others try to help us. I do want them to see what we have to go thru nightly, I want them to see his pain and for them to work on his feeds. But Dr R did reassure me that the no food by mouth would not be pushed on us if we did decide to admit him and they did see the vomiting, bloating and tube feed intolerance at night....so that made it just a little easier for keep an open mind.
We go back on Wed March 22, and with fingers and toes crossed, I am praying we see a pretty big weight increase than.
Thanks again for keeping Jake in your thoughts in prayers. We have such a positive outlook right now, that I could not be happier.
Saturday, February 25, 2006 9:45 AM CST
Well, we had our GI appt on Thursday...it was a long appt as I thought. Jake did gain two ounces, but these kind of gains do not matter anymore. It has been over a year and Jake has not gained any weight. He is the same weight he was last year. This is a huge concern for them now.
At this point, they are waiting for us to see the pain clinic on March 7th, and after that we need to sit down again with GI and there could be a chance that Jake will be admitted into Children's and a couple of things can happen. One, they want to work with his feeds to try to increase them, get him to be able to stay on the pump overnight. That is where a pain med might help Jake with the bloating at night. The other thing is that his stool cultures came back normal, which means, there is no malabsorption problems, it looks like he is able to brake down protein and sugars now, last year this showed he could not, so that leads the Drs. to think that most of his problems are stomach related, which means his vomiting is a bigger issues, which than means eating food by mouth could be causing his weight issues as well.
There has been talk over the last year that they want to see how he does if they do not let him eat by mouth and just J-tube feed him....and on Thursday, we were told that this is what they want to do now. This is NOT written in stone yet...but it is something that they are talking about, and I know one of his Drs. really wants to do this.
We are going to do what we can to get some weight on him, outside of his regular formula, we are now going to try weight gaining shakes with him, and pray that there is an increase in weight. They also feel that the Pain Clinic is a good next step, and they feel if they can get his pain under control, that we can get more feeds into him over a 24 hour period and that we increase his pump rate.
As of right now that is all we know....Please just keep praying that we can do this without having to go to the hospital.
Until Next Time
Christine
Wednesday, February 15, 2006 2:30 PM CST
Not a surprise by now that I don't update sooner..Again I am sorry. I guess the main reason is I LOVE to be able to give news...of course I so far we have been lucky with NOT getting bad news,or not so good news. But last week was neither good or bad...We were kinda just showed the WHOLE picture of why they are concerned with Jake's weight. So if I don't update, than I am not thinking about it...I am sure some of you know how that goes.
We had our appt last week, and as usually weight is still our struggle. The appt really made me see how in over a year's time, Jake's weight is the same as a year ago..It makes no sense. Being tube feed and eats by mouth...I just don't get it.
We go on Feb 23rd to see GI, and than March 7th to the pain clinic. We are also waiting back on some tests that were done on Jake's yucky stuff...so depending on what those say...it is all confusing right now, but be know that Jake is FINE, he is doing wonderfully. We just need to get some weight on him...and maybe with a pain med, it might help.
So Until Next Week
Take Care
Christine
Monday, February 6, 2006 7:44 PM CST
This Wed, the 8th of Feb is our weight check at Childrens...please keep Jake in your thoughts that we can come out of there with some weight gain...Thanks again for all the wonderful birthday wishes that were sent to him...He just LOVES getting mail...:)
Also big B-day party with his friends this Saturday, he is very excitied.
I will update Wed night on how things went.
Until next time
Christine
Tuesday, January 31, 2006 7:04 AM CST
What a birthday Mr. Jakers had...and we still have one more party to go...this is with his friends at school...this will be on Feb 11th...Even I am excited over this one, cause they are going to have a blast. The new pic that I added was from Sunday night, we had our family party at Grandma and Grandpa's...and this was his cake...he already blew two of the candles out before we even started singing to him...too cute!!
Just a quick little update on the medical side of things. Yesterday I got a call from the Pain Clinic at Children's and we have an apt with them for March 7th at 8:30am...and they said it should go until about 2:30 or so. Plus if they feel some meds for the nerve damage might help, they will sit down with us and give us their impression right than and there. So that is a plus. Most of these take weeks to hear anything back from.
I just wanted to update that before I forgot...we have a GI, Pedi and Nutrition apt this month as well, I knew that there could be a good chance that I would forget to mention this.
Thanks again for all the Birthday cards that were sent to Jake...He is so proud be 5 now.
Until Next Time
Christine
Saturday, January 28, 2006 7:19 AM CST
Happy 5th Birthday Jake!!!
My sweet Jake...
I hope you have a wonderful, happy and healthy year...Being 5 years means a lot of pretty cool things are coming your way.
I love you more and more everyday...Five years ago today..well actually tonight, you came into this world so little and so sweet....you have been thru so much in your first 5 years of life...but you still manage to be such a happy and sweet boy, and so full of life..and for that I am so proud to be your mommy...We love you SOO much Jakob...
Have a wonderful Birthday today.
Love Mommy & Daddy
Thursday, January 26, 2006 8:32 PM CST
HAPPY 5TH BIRTHDAY JAKE
I know...I still have a couple of days...it is just that I still cannot believe that my baby is going to FIVE on Saturday, the 28th...where does the time go. He is so excited for his birthday, he sings "Happy Birthday To Jake" everyday...he is too much. We are having his party (with his school friends) at Funway Cafe on Feb 11th, where Auntie Katie works...and he just can't wait. We are having his school party tomorrow, and than our family party on Sunday. I will do my best to add some pics..I promise!!
Today Jake finished his "Tiny Tots" gymnastics class, and starting on Tuesday evenings, he will be in a class with the 5-6-7 years olds...He really is amazing at gymnastics...and now he wants to do Karate too, so I think in the summer we stop the gymnastics and do Karate, and than pick gymnastics again in the fall.
On to the medical part of my "big" boy, everything else is still the same...as for weight, we don't go again until Feb 15th...which is good...going every two weeks for a weight check was just getting me down...now we have a good month were can just forget about it all, and he can just be a kid. I know a lot people wonder what is next, and so on...and all I can say is right now, we are just going to try to work with getting his weight up...and pray he does not lose anymore, especially a pound. Hopefully we will get an appt with the Pain Clinic at Children's sometime at the end of Feb, beginning of March. That will be an all day visit..just keeping my fingers crossed that they will be able to "try" to help Jake...the bloating, and the night waking's are the toughest.
I want to thank everyone who comes here and reads up on Jake...I know some of you don't always sign his guestbook, but I know you here, and that means a lot to us.
Also Jake's little friend Ethan is still in hospital...it has been two weeks today since his surgery, but Ethan is still dealing with pain. Please keep Ethan and her parents in your thoughts.
I will do my best to get some pics up of Jake's party...Again, Thank you all for you contiuned thoughts and prayers for Jake.
Christine
Friday, January 13, 2006 8:50 AM CST
Sorry the update is a little late here...long day yesterday.
His EKG looks great...and we are sure his bloodwork will be the same. Not happy that he lost a pound, but I am thinking since he had a cold the last week, that had to contribute to it as well...but he is still happy and healthy.
DR Rosen is going to send Jake to the Pain Clinic at Children's, and we are going to see if trying Jake on some meds for the Nerve Damage will help with his waking in screaming pain at night will have an effect on that. I really believe that his vomiting is his body's way of showing he is in pain. He very rarely complains, so it is hard to say for sure, but there is so much information out there on brain/gut connection, that it is worth a try.
We are also going to add another dose of the vegetable oil to his day, and going to keep his rate and hours the same for his feeds...and they are going to write some letters to get the Vancomycin antibiotic covered, and hopefully this will help with his bacterial overgrowth. Actually it is not that insurance won't cover it, it is just the people that could compound this meds for Jake does not want to do it for what the insurance will reimburse them for..so we they are just trying to figure out how we can get this and give it to Jake...although, this med is just something to try...not hanging their hats on it.
But all in all...nothing major. We go back to see the nutritionist next month, and than see DR Rosen again in March...I think we will see some weight gain by than. Although DR Rosen did mention that DR Nurko still would like to see how Jake does without any food by mouth...I am just not ready to do this...I am not sure I would ever be ready to do this...thankfully DR Rosen understands my feelings on this...not only as his DR, but also a Mother.
So that is all for now..and again...Thanks for thinking of Jake.
Please contiune to think of our dear friend Ethan, he had his surgery yesterday and all went well, we are hoping for a fast and pain free recovery.
Also please visit Jacen's website (link below) Cathy and Tom finally got some long awaited answers on Tuesday regarding Jacen's medical issues...and they could really use your thoughts and prayers during this time.
Thank you all
Christine
Tuesday, January 10, 2006 8:24 AM CST
Well on Thursady, the 12th, Jake has his appt with both GI and Motility Drs. He will also have propluisd check up, EKG and bloodwork. These are still routine, not to worried about either one. It will be nice for a change to go in a see our increase feeds and the added vegetable oil has increased his weight...keeping fingers crossed.
I wanted to ask if you can say a pray for a very close friend of mine and Jake's, his name is Ethan. Tomorrow he goes into the hospital for a Colostomy. Ethan has CIPO as well, except his effected area is in his large bowel, so they are hoping the Colostomy will relieve his pain and discomfort.
Here is his CaringBridge page...http://www2.caringbridge.org/canada/ethanjakob/
Thank you everyone for your continued support with Jake...He really has come along over this last year.
Christine
Saturday, December 24, 2005 7:14 AM CST
Wow...to think that Santa is coming tonight!!! As you can imagine Jake and Hannah are just so very excited. They have been up before the sun even came up this morning...and we don't start our Christmas Eve stuff until this afternoon.
I wanted to come and wish everyone a Happy Holiday and a Wonderful New Year. To think a whole year has gone by since we got some answers for Jake(actually 12/21/04).
I know for some of you it seems as not to much has changed with him, medical wise, but I can say what a difference we have sure seen over this last year.
From going to new Drs. that know how to treat kids with Jake's issues make, down to a med, a med that we were so grateful that Jake was able to get, Proplusid. This has been our saving grace as far as the vomiting goes.
2006 is going to bring us, along with other families, wonderful things.
To those of you that have kept Jake in your thoughts in prayers for this last year and a half, words cannot describe how much that has meant to us.
We strongly feel because so many of you were praying and thinking of him, he is where he is today...A Happy, healthy, always making mommy laugh, very bright ALMOST (still can't not get over the fact that my baby is going to be FIVE) 5 year old ball of energy. He amazes me everyday, and makes me so proud.
We do not go back to the Drs. until Jan 12th..Nice!!! So I will do an update with some pics of Jake with his presents from Santa...and how our holidays went.
Please also do not forget about the families that are still in the hospitals over this holiday weekend, please think of the families that are dealing with so much sadness right now instead of happiness. Please pray from them.
Until Next Time...Everyone have a WONDERFUL Holiday Season!!
Thursday, December 15, 2005 11:00 AM CST
Update Update...Was really tired last night, it was a LONG cold day, but a rather great day as well.
Let's see apt...well no lose and no gain as far as the weight is concerned...I have been thinking a lot lately and I have come to the conclusion that Jake is just going to be a peanut, in otherwords a little on the smaller side...and I am ok with that.
I told Lauren yesterday that I can no longer worry about the weight, I know I am doing all I can to get him to gain weight, and for me that is all I can do. I told her that when they start to become really concerned, than they need to let me know...otherwise, the weight checks are going to not be every two weeks, mentally I cannot do it, it seems like nothing changes, and just makes me sad.
Right now we have bumped the pump up again, and have added more formula to the water, to get it more concentrated. Plus we are to add 2cc's of Vegetable oil 2 times a day into his
J-tube, in the hopes that we can add some calories on this way. We also need to watch to make sure that this does not make his dierreah worse. It is hard cause he cannot brake down protein, and protein is what has fat and calories in it...and it is the one thing we know Jake cannot tolerate.
Well, that was pretty much it...nothing major, nothing to really worry about. We are just going to enjoy the Holidays without worry about his weight, or any of his medical problems.
I know I have said this before but, to me Jake is happy, he goes to school and loves it, he loves to play with his friends, and just loves life in general. Why take that all away, if everything revolved around his feeding tubes, getting sick, the bloated belly and his meds...he would end up being one unhappy little boy...and I refuse to let that happen to him.
On a side note, please take a look in the photo gallery, we were once again able to meet up with Cathy, Jacen and Tommy yesterday, they had an apt the same day....so we have some really great pics and I will post them in the gallery. Also we were able to meet two other families there as well, that have been struggling with issues like Jake. Emily Grace and her parents came from South Caroline to see DR Nurko and was having the Manometry test done, the one Jake had done last year.
We were also able to FINALLY meet sweet Paulina...she is the a sweet 11 month old little girl that has been at Children's since Sept with her parents. Paulina was also dx with CIPO back in Oct. This amazing family is from Puerto Rico, and have not been back home soon since Sept.
Please pray for Paulina and her family, and the hopes they can be discharged from the hospital anyday now. They have two other boys who are not with them at this time, they are back in Puerto Rico, and are coming to Boston for Christmas next Monday. Please keep them in your thoughts that they will be able to go back to there home here in Ma for Christmas.
Thank you all SOO much for your continuos prayers for Jake.
Christine
Thursday, December 8, 2005 12:14 AM CST
Sweet Jackie was diagnosed in Aug of 2004 with a Brain tumor. Unfortunately this type of tumor was inoperative.
Jake's friend, Sweet Jackie received her pink Angel Wings one year ago today on December 8, 2004
Please keep her family in your thoughts,
along with all the other families that have had to and still are battling cancer with a child or loved one.
May God Bless each and everyone of you