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Sunday, January 20, 2013 5:59 PM CST
Taylor Joseph (Jophie) Malone, 19, of Kitts Hill passed away Friday January 18, 2013 at Cabell Huntington Hospital. The Kiits Hill, Ohio native was born April 9, 1993 the son of Katrina (Trina) Malone who survives.
Jophie attended the Early Intervention Program in South Point and was of the Baptist faith. Jophie did not like plain dark clothing. In his honor please wear bright and colorful clothing to his service.
In addition to his mother he is survived by;
maternal grand parents; Jim and Gleah Malone of Pedro
aunt and uncle; Rina and David Jenkins of Ironton
4 cousins; Wade and Luke Jenkins and Ryan and Cindy Malone
second set of parents; Danny and Tammy Payne
4 special sisters; Megan, Anna, Laynie and Lexie Payne
and a special set of grandparents; Mamaw and Papaw Dorsey and Tom Morgan
a very special Pediatrician and friend; Dr. Sherrie Miranda
5 special nurses and friends; Tammy Payne, Lora Kelley, Katy Myers, Tonya Lemasters and Tiffany Depriest
Jophie was preceded in death by an uncle; Sean Malone
Funeral services will be 1P.M. Wednesday January 23, 2013 at Phillips Funeral Home, 1004 South 7th Street, Ironton, Ohio with Pastor Mike Long and Pastor Trent Carpenter officiating. Burial will follow in Sugar Creek Cemetery. Visitation will be Wednesday from 11A.M. until the time of the service at the Funeral Home. Pallbearers will be his friends from the Lawrence Township Volunteer Fire Department, Cecil Coffman Jr., Nick Poynor, Courtney Poynor, Shane Stewart, George Stewart and Georgie Sanders. Donations may be made in Jophie's honor to the Sugar Creek Christian Academy, 4824 State Route 141, Ironton, Ohio 45638.
http://www.phillipsfuneralhome.net/obituaries.aspx?turl=http%3A%2F%2Fhosting-21491.tributes.com%2Fshow%2Ftaylor-jophie-malone-95109683
Friday, Janurary 18, 2013 5:34 PM CST
Run to Jesus our sweet Jophie! No more pain baby boy.....No more!
Thursday, July 30, 2009 2:20 AM EST
Roid Rage Patrol............
And so the next steroid reduction begins.......
I reduced Jophies 9 a.m. dose from 15 mg down to 12.5 mg.....In theory this should be a small enough reduction so as not to cause too many problems/complications.
In theory....
In true Jophie form these small calculated reductions almost always bring out the Roid Raging Monster in full force......Typcially we see signs of it ugly head poking ever so slightly out of its deep dark cave around the 24 hour mark......
Just in case this momma is spit shining her armor cause I'm gonna slay me some Roid Dragons!
For now the little prince is sleeping soundly and because this momma has mastered stealth mode he is completely oblivious to the missing 2.5 mg of powdery hormone gold otherwise known as Cortef....
Still no word on Jophies A. Subsidy course this is not from lack of trying....
I am persistant and I do question with boldness.....
I am not afraid to ask for the truth.
In fact I demand it......
When a deer is hit on the road we have the decency to put it out of its misery. Do we not?
We deserve no less.....Agree?
Either you toss us a tourniquet or amputate it makes no matter to me. What does matter is that you must stop the gushing blood that continues to flow aimlessly to the ground....
The truth please......That's all I'm asking
See I even have manners ;)
When the dawn breaks I'll once again begin my dialing quest in hopes of reaching the living breathing person who quite possibly holds the answer to this long awaited question.....
Is Jophie included in your budget?
And, in the event there are any prominent eyeballs peeking in on us I'd like to remind yo to look very closely at who you are hurting.....
You see this smiling face?
How bout this one?
Or maybe this one? He sees angels you know.......
Honestly, I could care less about me but.....
Your messin' with my baby and this momma bear is startin' to growl.....
I'm just sayin'...........
Walking in his SONshine
Trina and Jophie
Monday, July 27, 2009 11:20 PM EST
I'm pooooped..........
Tired
Tuckered
Beat............
Mentally and Physically
You get the idea........
We've had sooo much rain lately that it's been next to impossible to get the grass cut. It seriously had turned into a jungle......Today I managed to wrangle that jungle into submission. It only too 4 1/2 hours. Usually it takes me about 1 1/2 hours which gives you an idea of how out of control that mess was........I'm sooo glad to have that taken care of. At least I can mark one thing off my list.....
There's so much going on that I honestly have no clue where to even begin or end. I'm having trouble wrapping my brain around some things let alone actually yanking it from my brain to here...
We still haven't gotten paid....I was supposed to have heard something today but was unable to get in touch with the person who "supposedly" has that information. I'll try again tomorrow.
Have I mentioned lately how much our government sucks right now? Maybe its only been the walls who've been hearing my ranting and raving? No matter it's still a mess and we're right in the thick of it all.....
I'm not comfortable just yet with telling all but soon if things turn out as we fear this momma is gonna be spewing like Old faithful!
I'm eating bacon by the way......Random
Random is my life lately....I'm seriously all over the board. Good luck following me....LOL
Jophie is doing well.......All smiles as usual with only a few of his normal little "blips" along the way..... Soon we have to do another steroid reduction. I dread it like always and have been putting it off...Bad Momma...I just hate hate seeing that Roid Rage! It's evil I tell ya just plain evil but, we have to muddle through the madness to get to the good on the other side......It's so worth it :0)
Jophie hasn't had much outdoor time bacause of our funky weather. We're hoping that's gonna change soon. We have a Little Tykes sprinkler ball we are dying to let him try. Water is such a "no no" but he loves it so much and I think we've covered all the bases to prevent anything from going wrong. Now bring on the sunshine!
Jophie hangin' out under our little shade tree......
Look how relaxed he is....
He loved it under that shade tree. You'd be surprised how tiny that thing is if you could actually see it in real life. It sure gives a lot of shade though! He could have stayed out longer but it was time for Lora to leave.
Jophies 4th annual Fall Fundraiser is coming up. I'm really excited about the whole thing as it's completely different than what we normally do.
We are having a Hog Roast/Fun day! It's set tentatively for Sept. 19th. The venue is pretty certain but we are just waiting on a verbal on that one. I'm working on the flier but still need that venue before they can go to print.
So far we have The Hog Man who will be roasting the hog and making all the food. The Hog has been donated. We have inflatables donated. We have tables/chairs donated. We have Port-a-Potties donated and you know you gotta have those! :0) We have a ginormous tent donated. We have 2 sheet cakes donated. We have one "very well known" place donating but I can't say what that is just yet.
There is also going to be Horse shoe and Corn Hole Tournements. A softball game. Games for the little ones/Face painting as well as the inflatables. Lots of yummy food! Pulled Pork Sandwiches/Brown/White Beans/Cornbread/Hot dogs & Sauce/Pop/Sno-Cones/Cake/Cupcakes along with other deserts. We hope to have balloons but we're still working on that one. Anyone locally have connections that could help there?
We also need themed baskets for auction/raffle. Lots of them. So far we have one from England coming(Thanks Tia!) One coming from Texas(Thanks Naomi!) One more I can't mention just yet. The good thing is we have several weeks to gather these as well as the other needed items.
We're waiting on phone calls back on a few things and have a bazillion more to make. Lora and I are going to sit down tomorrow and make our lists. "DONE" and "NEEDS DONE" and/or "Waiting to hear back"
We are going to need help as in "bodies" to help with the games/Inflatables/organization ect...You get the idea. I'll be able to take some pictures but Jophies nurses and I will be all swapping off taking care of him throughout the day/evening so someone taking pictures would be ever so helpful.
If you would like to help be it here locally, from afar, Providing a themed basket, Donating a desert, Donating any of the items we are still needing(I will post that list as soon as we get it organized), Any connections you may have to help with needed items/donationse ect.....Please just toss me an email at booboo2003@roadrunner.com or for those who have my number just phone me. I am quite busy with Jophie so I will be adding contact info of others who are close to us and will be helping.
One thing to keep in mind. If you are local and plan to help or stop by please do keep in mind that Jophie is VERY IMMUNE COMPROMISED and visitors are VERY limited. Visitors with ANY COLD SYMPTOMS or illness at all are NOT permitted to come in. I'm sorry if this sounds harsh but Jophies life depends on me following these very strict guidlines.
Did I mention the best part yet? The whole Hog Roast/Fun Day Benefit is FREEEEEE!
Yep! You read that right its FREEEEE! We will be taking donations at the entrance so all donations are appreciated but no worries if you are unable to donate. You just come right on in and have fun! :0)
One more thing to talk about.....
I have a few "new" things to add to Jophies donation section as well as a "Jophies Closet". (More on that later.)
For now I have these......
Blankie Buddies...Holiday Themed for starters
Pumpkin..
Kitty..
These are infant/toddler size at around 10 inches perfect to snuggle with and small enough to drag along in the carseat. I am working on a larger size for the school age child. The twins are 7 and actually loved them and would have taken them home in a heartbeat if given the chance.
If you are interested the infant/toddler blankie buddies are $12.00 Each plus shipping. You can use the donation button in the side bar. Please include "Blankie Buddie" as well as which one you would like with your order.
A quick thank you to those who have purchased cookbooks and a special thank you to Louise. You know what its for and although Thank you seems so inadequate it's truly from my heart. I'd like to thank all the "Little Elves" who seem to be leaving elf prints all over my house. Me thinks they are working overtime as Christmas is still a ways off ;) More to come on the "little Elves" saga.. :0)
Id like to also thank all my friends and family who have prayed for us and just offered a shoulder during these trials. Please do continue as it's still a very scary and uncertain time. I try not to dwell too much on it but reality tends to slap you square in the face totally ruining my Narnia vacation. Yep! I do often look in the closet for Narnia! :0)
And with that this momma needs to go. Lots to still do before my head can even think about hitting the pillow....
Trina and Jophie
Thursday, July 15, 2009 3:37 AM EST
Still Here.........Barely Be back soon...... Hanging by our toenails ;) Trina and Jophie
Seems a bullet kinda post is in order......
Saturday, March 21, 2009 6:22 PM EST
March 19, 2009
Yesterday we managed to hit the outdoors again. Jophie was likin' this day much better than the last course I "kinda" helped him out a bit with our teeeny little friend known as zofran ;0)
Whatever it takes to get this!
Who could it be? Hmmmmmm? Could it be his favorite red head? Yep! I love that he has so many people surrounding him that care so much for him. Tammy/Danny and the whole P. Gang are by far closest to him with the exception of me of course ;0) They were his mommy and daddy for a short period of time afterall. Besides, an extra mommy and daddy aren't such a bad thing to have would you say? ;0)
Oh yea we are no more than a vapor in the wind on this day back in the fall. Little Toad! haha
During the school year Tammy has to leave a bit earlier to pick up the twins so our time outside was short lived and Jophie was NOT wanting to come back inside but, you really need 2 when moving/lifting him so in we came. We got him all settled in the bed and lately when we stop something he loves doing he starts crying. It's pitiful really but at the same time I love it because first of all he's feeling well enough to actually enjoy what he's doing and second he's able to express that to me! Sad but happy at the same time especially when I can fix it which I did by the way. :0)
I tried sitting him up in the bed a bit which helped immediately. My thinking is Jophie knows when on his side he's going to sleep and at that moment he definitely was NOT ready for bed. I could tell it wasn't going to be enough and I knew I couldn't get him to his theatre seat alone so he could watch a movie SOOOOOOO....I brought the movies to him ;0)
Jophie enjoying one of his favorite movies! Madagascar 2! I had just started the movie and he was thrilled...
He's STILL watching it! Not sure but I'm thinking it's playing for the second time here...We knew he would love it because he has Madagascar 1 and it's by far one of his favs! The kid will watch it over and over again! Tammy bought him the sequal for Valentines Day! Thanks Tammy!
He didn't manage to make it sitting up the whole time....I had to lie him down so he could watch him from his side....You just gotta go with the flow of Jophie and his belly issues especially during those gotta pooooey times...
This afternoon we managed to clean/rearrange the area around his bed/under his bed and all the medical supplies around him. I even opened the windows to get some of this winter stuffiness outta here! Felt so nice! I can't do this very often because Johpie is so allergic to pollen in the spring and mold in the fall however, there are a few weeks before both seasons where we can enjoy the cool outside air AND I can dry clothes outside. We are in that time now hence all the laundry everyone keeps seeing strung all over my deck these days. The twins asked if they could stop at my rummage sale and buy something! hahahaha
OH and just in case you don't know this little trick I'll fill ya in....
If you open 2 windows in your house....One on each side of the house(Front and Back preferably) then, stick a fan in one of the windows making sure its backwards(blowing outwards) now turn it on high. It will suck ALL the heat/ winter stuffiness out of your house and at the same time will be pulling in the other window all the cool/spring/yummy smelling fresh air! Before you know it ALL the air in your house has been replaced! Ahhhh!
We did this all the time when we were kids at home. The only difference is my parents had one of those HUGE industrial fans and we had an upstairs. The fan was in the upstairs window and downstairs one of the windows farthest away would be open. It was cooler than air conditioning especially in the cool summer evenings and boy did it smell ever so good. Can I say Ahhhh just one more time?? :0)
It's nearly 11 p.m. now and all is well....No pooey relief as of yet but I still have a few more tricks up my sleeve ;0) For now Jophie is snoozing and eating all at the same time...He's so talented ;0)
I actually took a teeny break in the midst of this post to fix supper for Jophie and I. He needed some more blenderized food mixed up and it takes a smidge extra time to put it all together. The best part is once you get it all sorted out there's enough for close to a week if I calculate it right that is! haha
I never worry that he's not getting this or that vitamin/nutrient in his food because the formulas for tube fed kiddos are absolutely packed full of everything one would need meaning you can surive on that alone which Jophie has for gosh nearly 9 years! Personally, I just like tweaking things a bit adding my own special touches. I figure any improvements we can get for Jophie have to be a plus eh? ;0)
OK gotta scoot...I need to tackle whats in all the cubby holes of his hospital table...Tons of meds/supplies that need sorting...PLUS, bathroom is calling and so is Jophies timer.
Tomorrow is the first day of Spring! YAY! Have a wonderful First day of Spring!
Trina and Jophie
Saturday, November 15, 2008 5:10 PM EST
Thanksgiving is fast approaching and Christmas well its just around the corner too! For us the two holidays tend to collide. Jophie loves the lights on the tree so much.
Growing up our family tradition was to put the tree up by Thanksgiving. We loved Christmas and wanted to enjoy every single moment of it celebrating as long as we possibly could.
As an adult that love for the holiday season remains and because of Jophie we actually begin our celebration a bit earlier by getting our tree up the day after halloween. I do tend to go a bit overboard when it comes to things Jophie likes.
Because it is so hard to discern his likes and dislikes, when we actually do find something I try and foster that as much as I possibly can if anything to show Jophie some acknowledgement that we do in fact understand him even if only for that moment.
So, the tree is up. No decorations just yet but it is up. He continues gazing back and forth from the tree to us as if to say, "Excuse me but I think there might be something missing?" It's cute really and I fully plan to tackle at least his favorite part this weekend. The lights. :0)
Jophie continues to do well showing us little glimpses of improvement daily. The steroid battle continues as we continue slowly trying to wean him back to maintenance. Unfortuanately, we had some trouble on the last reduction forcing me to bring that dosage back to what it was. In the process I accidentally raised the 3 a.m. dose as well and while this puts a lovely smile on his face and makes him ever so happy, it does not help the weaning process one little bit. Now I must try and get that 3 a.m. dose back down to what he actually was tolerating well. Once I manage that then I'll tackle the next drop he seems to be having so much trouble with.
Slow and steady.
I keep reminding myself of this but, because we are so close I tend to get anxiuos and maybe push him a little faster than he's able.
Once again...
Slow and Steady Trina ;0)
We did well with our Meals 4 Wheels project selling 86 cookbooks. We are still well under the goal we need but, we are very pleased and think this has been a wonderful start! For those who ordered books I've added an update on the Meals 4 Wheels page which can be accessed vias Jophies blogspot.
http://jophiesjungle.blogspot.com
Thank you to all who have helped us in this project be it by purhcasing a cookbook or just by spreading the word. Without your help this would not have been as successful as it was. We are continueing to take orders as we will have extra cookbooks on hand when they arrive. We are planning round 2 to begin in January to be shipped in the spring of 2009. This should help with all those after the holidays "Fat and Sassy" blues! ;0)
Now this mommma needs to scoot. We have no nurse today and like always when Jophie and I wing it alone, I'm running behind. I have managed to make up about an hour and hope to have him back on track by 3 a.m. I would hate to go into Sunday still behind!
Please continue to pray for Jophie especially for him to remain well through the winter/flu season. It is the scarriest times for us. Jophie and I are getting our flu shots next week. A bit late but still I will feel much better once we both get shot! ;0)
We love you all and appreciate your friendship and your prayers as you continue to faithfully approach the throne in Jophies behalf.
Trina and Jophie
Saturday, November 15, 2008 5:10 PM EST
Thanksgiving is fast approaching and Christmas well its just around the corner too! For us the two holidays tend to collide. Jophie loves the lights on the tree so much.
Growing up our family tradition was to put the tree up by Thanksgiving. We loved Christmas and wanted to enjoy every single moment of it celebrating as long as we possibly could.
As an adult that love for the holiday season remains and because of Jophie we actually begin our celebration a bit earlier by getting our tree up the day after halloween. I do tend to go a bit overboard when it comes to things Jophie likes.
Because it is so hard to discern his likes and dislikes, when we actually do find something I try and foster that as much as I possibly can if anything to show Jophie some acknowledgement that we do in fact understand him even if only for that moment.
So, the tree is up. No decorations just yet but it is up. He continues gazing back and forth from the tree to us as if to say, "Excuse me but I think there might be something missing?" It's cute really and I fully plan to tackle at least his favorite part this weekend. The lights. :0)
Jophie continues to do well showing us little glimpses of improvement daily. The steroid battle continues as we continue slowly trying to wean him back to maintenance. Unfortuanately, we had some trouble on the last reduction forcing me to bring that dosage back to what it was. In the process I accidentally raised the 3 a.m. dose as well and while this puts a lovely smile on his face and makes him ever so happy, it does not help the weaning process one little bit. Now I must try and get that 3 a.m. dose back down to what he actually was tolerating well. Once I manage that then I'll tackle the next drop he seems to be having so much trouble with.
Slow and steady.
I keep reminding myself of this but, because we are so close I tend to get anxiuos and maybe push him a little faster than he's able.
Once again...
Slow and Steady Trina ;0)
We did well with our Meals 4 Wheels project selling 86 cookbooks. We are still well under the goal we need but, we are very pleased and think this has been a wonderful start! For those who ordered books I've added an update on the Meals 4 Wheels page which can be accessed vias Jophies blogspot.
http://jophiesjungle.blogspot.com
Thank you to all who have helped us in this project be it by purhcasing a cookbook or just by spreading the word. Without your help this would not have been as successful as it was. We are continueing to take orders as we will have extra cookbooks on hand when they arrive. We are planning round 2 to begin in January to be shipped in the spring of 2009. This should help with all those after the holidays "Fat and Sassy" blues! ;0)
Now this mommma needs to scoot. We have no nurse today and like always when Jophie and I wing it alone, I'm running behind. I have managed to make up about an hour and hope to have him back on track by 3 a.m. I would hate to go into Sunday still behind!
Please continue to pray for Jophie especially for him to remain well through the winter/flu season. It is the scarriest times for us. Jophie and I are getting our flu shots next week. A bit late but still I will feel much better once we both get shot! ;0)
We love you all and appreciate your friendship and your prayers as you continue to faithfully approach the throne in Jophies behalf.
Trina and Jophie
Wednesday, October 15, 2008 6:20 AM EST
10/12/08 through 10/31/08 We are live! Yes we are! I'm so excited to finally get this project off the ground. It's been a long time in the making. The button up top is now clickable and will take you straight to Meals 4 Wheels. We will be taking orders through October 31st. I'll leave this post up top during that time so it can easily be found. We've also set up a support group for all those who purchase the cookbook. Once you've purchased a book your are more than welcome to go ahead and join. You can either go to the actual sight and request membership or I can send you an invitation. The group sight can be found at http://health.groups.yahoo.com/group/Meals4Wheels/ If you have any questions please direct them to Meals4Wheels@yahoo.com and someone will get back with you shortly. We would be ever so greatful if all our friends new and old out there would help spread the word with us. You can do so by placing our Meals 4 Wheels button on your website or blog by just copying and pasting the code into your blog or website. You can find the CODE at the bottom of the Meals 4 Wheels page. If you need any help at all with the code just toss us an email using the email above. I will also be adding a link shortly to a flyer that we will be handing out locally as well as putting in places of business. We would love for you to pass these out as well. Just save it to your computer and print out as many as you'd like. Think about that for just one second. A nationwide/Worldwide flyer distribution. Wow! I don't think I've ever heard of that being done. We would also like to extend our gratitude to all of Jophies caregivers, local friends as well as our online friends for being so supportive of this project. Your love, caring and support for Jophie is unmeasureable. We could not have completed this without you. We love you all and are forever grateful for any part you may have had in it! We have one more request and that is to please pray for this project to be successful. Each and every portion of this project has been a labor of love fueled only by one small boy. One small boy who is loved by so many and in great need. All our love Trina and Jophie
Tuesday, September 23, 2008 8:14 PM EST
We're still here......Alive and kickin' and breathing! This will be clickable once we launch. Fast Forward to NOW as the above portion of the blog has been written since June!...... All is well in the Jungle. Fall is here and there is so much to tell about the last few months. In fact there is so much its overwhelming soooooooo.........to follow the advice of my dear friend Tia and just so I don't wind up banging my head against the wall, I'm going to just do a big ole bullet post and then we'll all be caught up! OK thats it for now! I have tons and tons of really cool pictures to share but, I'm gonna save those for future posts and I must say............ It sure feels good to be blogging again! Keep an eye out for our Meals 4 Wheels launch! Trina
My papaw used to say "its always a good thing when you wake up on this side of the dirt"Wise man eh? :0)
Life has been very busy and honestly I have no clue where to begin other than where I left off.
We are still adjusting to this new "trach lifestyle" and I can honestly say it hasn't come without its basket full of troubles. Jophies anatomy and shape is very deformed due to progression of disease but mostly to severe kyphosis which I won't EVEN get into the "what mostly caused it". I will say last time his Ortho doc checked his curve was more than 90 degrees and you don't have to know anything about Kyphosis to know thats a kiss your butt curve! Because of these things finding just the "right fit" for Jophies trach has been challenging to say the least.
We've continued with followup appointments with his ENT doc switching this and changing that. I think maybe I'm getting a bit ahead of myself. Let me back up a bit. Prior to the "switch this and change that plan" Jophie was just not adjusting well with the trach. He continued to be in severe pain along with regularly coughing up blood. Bright Red blood. Lots of it which to me indicated an "active bleed" "somewhere" from "something". Yea I know thats just about as clear as mud now try being on this end and looking through all that mud trying to figure out whats wrong with your non-verbal son.
Yea right.......It has NOT been fun. Not even a little bit.
The bleeding continued as well as his pain and then he started acting "ill".......We took him to see Sherrie who also assumed the "head scratch" position that seems to be the only effective thing to do these days when dealing with Jophies little troubles. Did I say little?? Surely I did not??
Well suffice to say that little visit only managed to send us in the direction of his ENT doc again but this time we had success! Don't get too excited here. Success in my book I'm certain stands for something entirely different than what it does in your book. By success I mean the ENT was able to "pinpoint" the problem.
The verdict: Severe throat infection(I'm assuming the big bad tracheitis he warned me of prior to surgery), granulation and scar tissue that had ran amuck and grown to blob monster proportions and in turn was causing the "narrowing airway" which was also responsible for my little guys lovely sounding cough liken to that of a baby velociraptor on speed! Oh and lest we forget I have to mention the grand canyon sized ulcer that the honkin big adult trach was causing and YEP thats where the bleeding was coming from.
The Solution: And let me just say I use this word "very lightly" because what we began doing was by no means the solution but rather "the path" leading us to where we are TODAY which believe it or not I am leading up to. The plan "that day" was to put Jophie on 2 weeks of a big gun antibiotic to knock that throat infection down and hopefully at the same time keep that "EVIL" pseudomonas monster at bay along with a new drug. Ah yes how lovely. One more drug for me to keep track of. Now mind you I'm not complaining but, if you could see this childs drug regimen you would understand all the eye rolling and whining I seem to be doing lately.
The new drug needed to be an inhaled steroid and that alone about pushed me into orbit. Aside from the fact that we are STILL weaning massive amounts of oral steroids from his last PICU stay he also has a "HORRIBLE" allergy to the one the ENT doc wanted to use. I KNEW exactly which one he was going to say. Pulmicort.
No can do.
He honestly could have benefitted from this years ago but it seems there weren't many options aside from the Pulmicort but today well the playing field so to speak has grown. So, the next drug of choice was FloVent. Ah well theres a new one he's never tried which that in itself pushes me into twitching mode. The child has so many severe allergies none of which you know about till you try them and he almost dies from the reactions.
Ah yes another lovely adventure for us to face "alone" at home for the first time.
We honestly didn't have much of a choice because his airway had narrowed so much from the infection and the granulation tissue SOOO, FloVent it was and can I just say I LOVE this drug. No reactions at all AND the best part it began taking down the swelling almost immediately! I honestly think this one will be right up there with Zofran as drugs we can NOT live without.
Well we puttered on through the next couple weeks obediantly changing the inner canula nightly, cleaning the trach daily and changing the entire thing out every week. The first 2 weeks he was still in considerable pain which we would find out later had "very little" to do with the surgery pain inself.
He continued coughing up blood, crying and was in just pure misery. I just knew this could NOT be the "better quality of life" everyone had been speaking of.
Could NOT BE.....
Through all of this I kept insisting I felt like the small adult trach was just too big for Jophie and that it hurt to change the canulas and it hurt to change the trachs themselves. Now you have to remember Jophie has a VERY high tolerance to pain and has had MANY surgergies some of which were much more painful than this espeically this far out post surgery.
I continued to yammer on to no avail as we pressed forward hoping for improvements and better days.
On May 8 my plan was to attend the twins pre-k Graduation but alas my plans were foiled. Lora(one of Jophies nurses) and I were changing out the entire trach. I was a bit antsy about the whole thing knowing this was still on the tale end of that bad infection/swelling and even uttered the words.
"Gosh I hope when we pull this out the airway doesn't go closed ...... Or something"
Ah yea...Or something was about right on target......
AS SOOOON as I pulled the old trach out......OK maybe even sooner ....that darn hole started closing off. I was cleaning the area like Tammy(Jophies other nurse) had been doing every week for the last 6 weeks only this time the hole began closing right before my eyes! The darn airway looked as though it were collapsing on itself! Holy cow! OK so talk about freaked...I didn't have a smaller trach to put in which your supposed to have when you leave the hospital. Seems there was a mixup on what size the ENT doc "thought" he put in Jophie.
Anyway, I had NOTHING....Nada! NOT one thing aside from a drinking straw to hold that thing open. Can you guess what unfolded next???
Ah well if you've followed us long enough you know how crazy things can become in a matter of seconds. Can anyone say 911??? YEP! You guessed it. I had to call the squad and turns out we get this "high strung" new medic lady who was freaking out. OK when I called I said...."This is NOT a respiratory distress call" I just need him to be transported quickly and safely maintaining what airway he has left.
Well next thing I know theres a second squad in the driveway and every neighbor from here to timbucktooooooo was outside watching the show. You see I used to work for this EMS company and everyone round these parts knows that when 2 squads show up its either one of 2 things..... A code OR multiple patients from a car accident NEITHER of which was happening here. Oh boy........
On a good note they did manage to get a pediatric intubation tube into his stoma to keep that airway from collapsing completely on itself. My biggest fear was it closing completely and having to go through another surgery. OH and did I mention that in the midst of this madness I phoned Jophies other nurse AND his ENT who by the end of the conversation had me feeling like white trailer trash and very incompetent.
"Why DONT you have a smaller trach for emergencies?""Don't you have nursing??" "Maybe you should just let them put it in""I have a hard time believing that hole is closing that fast""I just don't know what to tell you about getting the "extra" trachs your insurance is not covering" "Don't you have some "social service" person you can call to help with that?""Maybe this just wasn't the answer to the prayers we thought it was""Maybe we should just let it be"
UM excuse me but I'm by no means an expert at trachs "just yet" however.....
1. I'm not stupid by any means
2. I learn very quickly
3. Up to that point we had changed the trachs out for 6 weeks with NO PROBLEMS whatsoever
4. AND, more importantly....I worked on the squad as an advanced EMT for 5 years and intubated more people than I can count so back off bub!
As for his other comments......I plead the 5th for fear of the many eyes reading this
Never fear though he's since redeemed himself "somewhat" but, I won't be forgetting it anytime soon.
Now off to the hospital we go! I sent Lora ahead in the squad with Jophie and I stayed behind to pack up really quick and answer all questions from concerned neighbors then off to the hospital I flew!
By the time I got there the ENT's associate had managed to get a pediatric trach in "BARELY" and let me just say, I can NOT tell you how happy I was to hear......
"Yes doctor C the hole "really" was closing up and I could "barely" get it in myself. "
**Insert evil grin here**
Needless to stay he had to be admitted and go into surgery the next morning where the "plan" was to replace the "small adult trach" .....WHAT?? You've got to be kidding me? Just prior to surgery I couldn't help but express my concerns and if I were being honest here I could see that BOTH mine and his concerns were legitimate however, that still didn't make me any happier.
His last words to me were....."I won't know anything till I actually get in there and look however, I will "try" and work out some kind of compromise to make us both happy.
At this point I did NOT care about "MY" happiness but rather Jophies Happiness and more importantly a "painfree" solution.
One last kiss and off I went to grab something to eat. It seems I'm forever turning my son over to the hands of surgeons these days all the while sitting in a waiting room chewing my fingers down to nubs. I honestly try to keep it together but I do much better when I'm not alone and unfortunately this particular surgery there wasn't anyone to come sit with me. I know I'm a big girl but with Jophie there is the potential for "anything" to go wrong and its just plain scary facing these things alone.
Regardless, the surgery went well and the surgeon came straight out to talk with me after. The very first words out of his mouth....."I guess everything happens for a reason"
UM yep! Especially in our world where God is in control
It seems that the "larger" trach had continued to bore into that ulcer not allowing ANY healing at all. It wasn't any better compared to his last office visit but, wasn't any worse and to boot......it had begun to bore into his windpipe. UGH...This poor baby ALL THOSE WEEKS was in horrible pain much worse than we knew but, because of his high pain tolerance we couldn't see just how much.
Because of all of this, the surgeon decided to leave the smaller trach in and and not muck with it to much. The plan was to leave the smaller trach in place longer giving the airway/stoma/ulcer some time to heal however, because it does not have an inner canula the chance of it plugging off increases the longer you leave it in place not to mention the risk of infection due to his colonization of pseudomonas. Phew! Did you catch all that?
OK if that isn't bad enough in the midst of ALLLL of this madness, My fight with Medicaid continues now into the trach supplies and determining what or how many of each item they are going to pay for. Thus far they are only covering 2 trachs per month and we need 4.
I actually had to cancel one of his appointments because we didn't have the trach to take to the office to change them out. AND, because of all his complications from the bleeding ulcer/infections ect, we've had to switch to a diff. brand which is more expensive/custom/more pliable/softer trach made of silicone. It reminds me of a silicone baby nipple so you can imagine how soft that is.
OK here is where the "switching this and changing that" comes in.......
The plan was/is to use the Bivona(Custom/pricey) trachs (The surgeon did send 2 home with us after this last surgery.) One he has already been using and the other is to be put up for an emergency as it's one size smaller and to be used only in the event we have a repeat of the airway collapse thing again.
I pray not!
Just prior to switching to the Bivona(Custom/pricey) the ER had placed a pediatric Shiley(Not as pricey). These are not as soft but they are still softer than the adult Shiley which was "Hard plastic" and much bigger......
The long term plan is to "swap" back and forth with these IF he tolerates the Shiley. So far the Bivonas are working the best for him and no bleeding. I'm leaning towards just leaving well enough alone and use those.
My next struggle will be to get medicaid to go from covering 2 shileys(Not as pricey) to 2 expensive Bivonas and IF for some reason they do then I need to also convince them we need "2 more". If they will not then I will have to come up with 2 more trachs each month along with the many other things I'm already purchasing. A donation from a dear friend has made it possible to purchase one trach and as a last resort I can donate plasma 2 times per week as long as I wait 48 hours in between. I know Tammy you are dead set against this but ya gotta do what you gotta do girlie.
For now to keep from going crazy I'm focusiong on ONE TRACH AT A TIME and going to rely on our next plan.....Yes a girls gotta have a plan lest I go crazy :0)
Now this brings me to the next Big adventure! Anyone who has followed me knows for the last year I've been doing this 'lifestyle" change ....Excercising and completely changing my eating habits/foods. Since last May myself and some close friends have faithfully followed this lifestyle change all the while creating delicious dishes along the way. Foods that anyone can make and ingredients that can be found at anyones local grocery and the best part is its GOOD! We have around 100 recipes and not just "a few" of this and that but a well rounded line of Main meals, deserts and snacks/holiday foods that everyone is sure to enjoy!
The past year we've learned so much all the while compiling recipes along the way. All of our tips/tricks and the foods that we are eating. Between us all we have lost lots! Personally, I have lost nearly 100 pounds to date not including all the inches that are gone and I'm still going strong!
Two of my friends have since met their maintenance weight and I'm happy to say they continue to maintain that! In fact my closest friend has dropped too low and we are working out ways to help her pack back on a few pounds to get her back to "maintenance". One thing we have found is that we literally "crave" these foods. I'm not sure why but we do and I can honestly say I am eating "MORE" than I have ever eaten and STILL LOSING.
In fact this is working so well that my sons pediatrician and my own physician are promoting our cookbook to their patients! Yes, you read it here first. Our very own cookbook! I'd LOVE to take all the credit but can only take credit for my portion alone :0)
I'm sure many of you out there have tried "dieting" to no avail hitting all the same roadblocks like "yo yo-ing" which I hate by the way. So, we sat down and said, "What foods can we NOT live without?" My answer was of course "ALL OF THEM"! I do love to eat :0) We also asked ourselves, "can we eat this way for the rest of our lives?" If the answer was NO then we knew we would be setting ourselves up for failure "AGAIN".
SO, we made a list of our favorite foods and started there! We tweaked and trialed and errored and taste tested using US and Tammys kids and hubby as guniea pigs......Those poor babies and her poor hubby. LOL
Anyway, as we started "figuring out" the tricks and learning what to add and take away and more importantly how to do those things "without" compromising taste and next thing you know the list of recipes begin to grow and the fat began to fall OFF. In fact it snowballed into one recipe after another all the while shedding one pound and one inch after another!
Just like that!
Granted we have had some major bad tasting flops and a few "not enough calories/not enough fat/losing to fast/losing too much issues but, you won't have to suffer through any of those like we did because we've already did the "tweaking" and paved the way! :0)
Now here is where it gets exciting! One of Jophies nurses said, "Why don't you do a cookbook and why don't we call it, "Meals 4 Wheels and Beyond" and, lets use it as a fundraiser for Jophie? Wheels being some sort of transportation for Jophie and Beyond to cover "all those other supplies/equipment".
What a great idea!
Not only will we be helping others with what I think is one of the worst problems in the U.S.(being overweight) but also it will be helping Jophie. Transporting Jophie at this point has become almost impossible and very unsafe. We aren't shooting for "brand new" in fact, I would rather go "used".
Our plan is to purchase a "wreck" and Tammys dad who rebuilds wrecks will fix it up for us OR a good used vehicle. We are stepping down to something a bit smaller than the van because of the economy and also because he can no longer sit in his chair while riding.
Once the vehicle is purchased/finished we will then have to have a lift/platform of sorts put on the back so the wheelchair can be hauled. Jophie will be lying in the back seat and his PT wants him to have a side lying seatbelt like those used to transport kids in spica casts to ensure his safetly. She is so not happy with our transportation but neither am I.
The next step after that will be to get medicaid to cover a Hoyer Advance lift that can not only be used in the house to do transfers but can also be used to transfer him into the vehicle and its portable to boot! He's nearly 100 pounds now and with all his tubes/connections/supplies/equipment its impossible to move him alone.
Phew!
It's a big plan but nothing is too big for my God and I figured we might as well shoot for what we needed and not half way do it..... :0)
On a side note Sherrie(Jophies pediatrician) is working closely with us writing letters and such trying to get as much covered as she can. This is nothing new and not something we haven't tried before. In fact we have "CONTINUED" to do this for many years in an attempt to squeeze out of medicaid what is necessary and for the record when things are limited and/or denied the reason is almost always....
"That is considered a luxery" ???????
When is breathing considered a luxery?
When is preventing bugs from crawling into your airway a luxery?(yep they won't cover an HME to cover his trach when outside)
When is speaking a luxery? (I've yet to see a speaking valve even though they are "supposedly covered")
When is suctioning a luxery? (We are limited and told to "REUSE" these!) Omgosh can you believe it? My dear friend who is a missionary cracked me up this morning with her...."might we suggest THEY use them" ROFL!
And the list goes on and on and on......
It seems that medicaid has found this evil little "loophole" of sorts. A flaming one at that! When an item is ordered by his pediatrician and say she orders 10 of an item they will then make an executive decision "over" the physicians order stating you can have only X amount. Because of this "sort of approval" you can NOT contest it and/or appeal it because on paper they did NOT deny it but rather "limited" you on your quantities leaving you to cover the rest.
These are not trivial/luxery items as they so often state. I just wanna scream it from the mountain tops that these are not bicycles, bouncy balls and swingsets were asking for here folks but rather "life saving" gonna die without items!
Ah yes pass the prozac please........Breath in and breath out
OK back to business. Meals 4 Wheels is almost set to launch. There is a blog button ready complete with html so that anyone who would like to help spread the word can place it on their blog and or websites. We would so appreciate anyone that can do this for us as advertisment is going to be the KEY here. We also have started a support group which will be exclusively for members who purchase he cookbook. Our hope is that the group will help encourage and be supportive as you travel along through your weight loss journey. We've been able to do this "together" and I can't tell you how much easier it has been with full support.
We have an email already set up at meals4wheels@yahoo.com
We also have a P.O. box set up for anyone who doesn't have paypal and would need to send a money order and/or for correspondence.
Meals 4 Wheels
P.O. box 39
Kitts Hill, OH
45645
You will also notice in our sidebar our Meals 4 Wheels Button
Saturday, April 5, 2008 6:34 PM EST
Breathing is a good thing I know its alot to pray for but theres ALOT happening here with little to no reprieve. I thank you from the bottom of my heart for your love for Jophie and as always I stand amazed at the many lives he continues to touch and the amount of love surrounding one small boy. All our love, Trina and Jophie
So I've been told.......
Seems lately I find myself gasping for air only to realize once again I'm holding my breath. I expect or rather pray this will soon pass but for now a few good hits off Jophies oxygen should keep me going.
I hope......
I do apologize for my lack of updates but I am very serious when I say
I CAN BARELY BREATH
Jophies care is very demanding and requires constant attention 24/7 and with his newest addition.....
The Trach
Life as we know it has become even more demanding if that is even possible.....
I'm sure at this point you'll be expecting some big pink fluffy bunnies and rainbow lollipops? How bout some dancing daisies or a big ole smiling Mr. Sunshine?
On most days you typically would find those things here however.....
On this day......
At this exact moment in time....
My brain is dumping just the opposite so please bear with me as the garbage flows........
Jophies surgery could not have went any better. The odds were so stacked against him yet every single procedure went perfectly. God was definitely guiding the hands of the surgeons as well as all the doctors and nurses involved with his care.
Many have asked if I was alone the day of his surgery.
I was not.
I never doubted not even for one second that I would be. I KNEW Tammy would be there barring Jesus coming back. :0) I was equally thrilled to find that Danny and their Pastor would be coming as well. I can always count on them to be there always a constant just as the air I breath. Their presence always has and always will be a safe and firm place for me to hold on to.
Thank you Danny, Tammy and Tim for coming. It would have been very difficult facing this alone.
The days following were nearly unbearable at best ....... Aside from watching Jophie in pain from something I struggled to allow, we were also dealing with steroid issues, silent cries/screams that ARE more than I can bear as well as pain management which turned into a delicate balance resolved only by listening to Jophies little fiddle. He played and we danced. The nurses were very diligent about watching/listening to me which in turn helped Jophie. We remained in the PICU the entire 3 weeks reminding me yet again that the nurses in that unit are a completely different breed. Each hospital stay(and we've had MANY) be it on the "pediatric side" or the "PICU" side, my admiration and respect continues to grow for the nurses working with Jophie and, with this comes expectations.
Yes, my expectations are very high when it comes to doctors and nurses and what I need from them but, it's only because I've experienced some of the best. I just can NOT bring myself to settle for anything less than I'm comfortable with or what I think Jophie deserves.
Would or Could you?
I've also found that to treat the child you must also see to the parents needs and when or more importantly IF you can start to understand the parent and what they are facing then and ONLY THEN will you effectively treat the child. I find this even more so when your dealing with medically fragile/chronic kids and their families.
We're Tired......
We're Weary......
NO
We're exhausted.....
We have no privacy.....
Our homes are invaded DAILY.....
We're held prisoners in the very hospitals that we KNOW will save our child.....
We long for normal.....
We long to be the one making the decisions not the one sitting back literally "on our hands" watching helplessly as others take their place in what should be OUR drivers seat.....
We long for more time.....
We long for forever......
We long for LIFE..
Our childs life....
And more than often we've been watching our child suffer for many years all the while being forced to make life and death decisions that continue to pound us like one lightning bolt after another.
Fast, Unsuspecting and Deliberate but always concise never missing its mark.
It's like a slow agonizing death with constant ups and downs aboard that dreaded emotional Roller Coaster......
I never did like Roller Coasters!
I continue to struggle with my decision. Some days I KNOW I did the right thing and other days.... I just don't know
Most days I feel like I'm failing miserably..
Doubt creeps in often....
Days when he still can't sit up....
Days when his tears flow like rain....
Days when I watch as he struggles to utter just ONE sound.....
Days when I watch his frustration through silent screams and silent crying....
Days when it looks as though his quality has suffered instead of improved.....
Days when we watch his pain and watch him cry as we care for his "new needs".....
On most days I feel very alone in all of this...In the stillness of the night and the wee hours of the morning I'm at my worst. The moment one of his nurses or aides leave the nightmares begin. Between the deafening silence of his "absent voice" and the mind numbing noise from the air compressor and concentrator I fear I might go mad....
I'm consumed with thoughts that occupy my mind constantly. Thoughts that I don't dare utter out loud lest I tell satan my secrets. Thoughts that will remain locked deep inside where they are safe.
And, if after reading this you feel like you've been drug through dog doo across a bed of nails all the while being slapped silly with thorn bushes as bamboo shoots are slowly slid underneath each nail bed then welcome to my world. Now multiply that times about oh say 100 and then maybe you can feel just a smidge of what the last 6 weeks have been like.
Maybe.....
Will it get better?
IT MUST and on certain days IT IS
Baby steps...
Am I really alone in all this?
NOT AT ALL
Does it really feel like I'm losing my mind?
YES Every single day
Did I do the right thing? Honestly?
I DONT KNOW YET
For now I have to believe I did
Will we be all right?
YES be it good or bad we WILL be OK
With the help of my my dear friends/family and my heavenly father we will go forward. I don't think my feet have actually touched the ground these past 6 weeks. I'm certain I've been carried because there is absolutely NO WAY I'd be in this upright position otherwise.
Now for the Pink fluffy bunnies you've been waiting on!
Yes, there are some good things to say :0)
He's ALIVE
I know my days with Jophie our numbered and I will NEVER EVER take his life for granted. I'm very thankful for the time we've had together and will continue to spend each and every moment as though it were our last.
His birthday is April 9th. He will be 15 and I'm so thankful for yet another year with my sweet boy!
Jophie did in fact sit up one day for about 3 hours....It wasn't the best position but it was an upright position none the less....
He's still swollen more than normal because of the steroids but it's not as bad.
He's smiling more than he did a few weeks ago.
He's sleeping.....It's not great but better.
He's still requiring sedation and pain medications but not as much.
His first trach change at home was very traumatic but not as bad as the first one in the hospital. Last weeks was even better.
Cleaning his trach each day is becoming less traumatic for him.
He doesn't seem as frightened as he was a few weeks ago. He's still scared but not as bad.
He's tolerating his feeds well.
He's tolerating his water infusions well.
He's gotten back to "his normal" schedule somewhat.
He's only requiring 2 liters of oxygen most days.
His oxygen sat remains good except during steroid withdrawls and when he needs suctioned.
His heart rate is improving. We are seeing more of his normal 40's-60/70's heart rate as opposed to the high 100's to 200's. He is still zooming when he's having steroid withdrawls/pain/agitation but aside from that there are more normal days.
He's been able to lie on his back for the first time in years and he really enjoys it. He can't lie fully because of his shape but he makes sure he's looking right at the ceiling. This would be a positive quality of life skill he's gained.
These are some of the positives I remind myself of daily. I try to find something new every day even if it is small. I NEED these reminders.
DAILY...
I also have so many people to thank. There has been so much kindness/caring and an outpouring of love for Jophie. So much so that the words fail me. I'm going to do my best to share with you all I can remember. I'm so afraid I'm going to forget someone so please forgive me if I do. In fact toss me an email and say...HEY...I did this!
Lets start with right here at home. Tammy, Lora, Katy are Jophies nurses/aide. I don't know what we would do without them. Tammy kept me calm on the phone while I waited for the ambulance/came to see us at the hospital/made sure I had snacks and food/kept me sane/spent MANY hours on the phone with me. Lora came to work early, helped me pack and spent the whole day with me at the hospital. Katy made trips to the hospital bringing Jophie supplies and all the girls families/churches prayed constantly for him during his stay and thats just the TIP of the iceberg of what these girls do for us. ONLY THE TIP. I could NEVER name all of what they do. Thank you girls for what you do and continue to do. My thank you seems so inadequate in comparison to what you do for us. Love you guys!
My online friends....
Lisa my dear friend I met on ebay. She's always the first person to make contact. Always the first person to say ..."What do you need?" Always making sure I'm eating. Lisa understands. She's been here. She knows what its like to watch your child near the brink of death...Again and Again....Living in a hospital never leaving. She's tasted death and will do anything to make this just a litle bit easier for me and she even taught me about Western Union! :0) Thank you Lisa and yet again it seems so inadequate. Love you girlie!
Jennifer my dear friend I also met on ebay. Jennifer actually lives close and is usally the second person to make contact after Lisa lets her know whats going on. She too is ready at a moments notice to bring me anything I need and/or do anything I might need and has made sure I've eaten or gotten what I need as well. ALWAYS. She too phoned regularly to check on him and even continues when we return home. It's been so nice to actually meet her! She's such a sweetheart! Love you to girlie!
The girls from my design group ODOD. They've been so patient with me as I've not been able to participate with the group for so long. These sweet girls rallied and also made sure my tummy was full. I also got to talk to a couple of the girls on the phone. Brenda continues to check on Jophie and Robbies generally was always around for a quick chat on messenger. Thank you so much girls for all prayers, support and all you've done for us. Love you guys!
The girls on both my ebay boards. Thank you so much for all your kind words/concern and prayers. They are more appreciated than you'll ever know.
The Ronald McDonald House for letting me do my laundry.
My dear friends I've met on Ethans(Little E.) prayer chat room. Thank you for your persistance as you faithfully approach the throne in Jophies behalf. And to those who were a part of Jophies Netflix surprise. Thank you so much! What a sweet gift for the little guy and for me after we got home! Its the PERFECT compliment to his Make A Wish Movie Theatre! :0)
The Doctors, nurses, respiratory, surgeons, hospital, social services and all the medical staff involved in his care.
I've gotten so many uplifting emails. Many are on my laptop and a few on my desktop. My plan is to reply to those personally so rest assured I did receive them and am very appreciative of the time you took to write me. Please be patient with me as it will take a bit of time to reply.
All the churches who had prayer chains going .... There are so many I could never name them all and my many friends on messengers that I could summon most any hour of the night or day especially my dear friend Tia! Tia even phoned a few times to check on Jophie which may not see such a big thing but it is! Tia is from England! Thank you girlie....You know I love you! :0)
There are just so many people to thank and unfortunately I'm getting very weary and my eyes are blurring so I'm going to end the Thank you's with one big.....
Thank you to everyone!
Specific prayer requests...
Monday, March 10, 2008 9:51 AM CDT
This is the day which the Lord hath made Let us rejoice and be glad in it............. http:/
Jophies surgery is later today. At the moment is 4:00 a.m. and they just made him NPO till the surgery. Ped surgeons have 14 cases tomorrow aside from any emergencies. Jophie is last on the schedule so his will most likely be somewhere between 8-11 p.m. They really couldn't give us an exact time cause typically they are behind anyway and there are almost always unforseen problems. Regardless, it will be sometime tomorrow night.
The risks are great. Much greater than I anticipated. My choices once again are grim at best. There's bad and then there's worse. I'm backed in a corner facing 2 evils. Without this he will die. With this he may die. The percentages are far greater than a normal child because of his overall condition then factor in he's compromised at this moment and the odds become even greater.
I've struggled with this for days. Praying and crying out to God for the best answer. Any answer. All those involved in his life/care are on the same page. Friends, Family, Pediatrician, Experts, Surgeons all feel like/KNOW this has to be but knowing that doesn't make this decision any easier.
Ultimately I'm the one who has to sign the dotted line. I'm the one making the final decision. I'm the one holding his life in my hands. I'm choosing life for him which could ultimately lead to his death.
Now find a quiet place. Sit down and say that out loud to yourself then imagine its your child. I'm sure you felt the same cold chills run down your spine that continue to make their way up and down mine.
It's a hard place to be in yet I can't run from it. I'd love to mind you. Run very far away with Jophie in tow and hide but then my head clears and once I again I stand toe to toe facing these giants.
When all is said and done I know God is in control. Preparing me now unfolding the way for all my tomorrows and whatever I'm to face. I'm so glad he's already in my tomorrow walking one step ahead and regardless if its joy or its sorrow I know he'll do just what he says. He will never leave Jophie and I alone and God is still God in spite of the odds. This I have to hold tight to. Believing with every ounce of my being.
There is no room for doubt.
NONE
That being said. All I ask is that if you pray please do with all that is in you and do so believing. Believe in what your asking for. Believe it like you've never believed before.
On a good note Jophie is more stable than he has been in the last couple of weeks which can only help the odds for this surgery. He continues to require 12 liters of oxygen(50 during wake times. At night he continues to wear his Bipap at 55 xygen. Looking at the overall picture this is an improvement as he was requiring 100 nd on Bipap 24/7 for the first 4-6 days and even at that was BARELY keeping his oxygen saturation in the 80's. For comparison at home prior to this he only required 2 liters and often times only 1.
Some of the biggest concerns tomorrow.
1. Intubation is going to be difficult at best. They can not just place the trach without intubation because IF the surgeon is unable to place it then he would be left without an established airway in which case he would die. We just need them to be able to do this ONE MORE TIME. Just ONE MORE. FYI: It's been over 4 years since he was last intubated and the progression of his Kyphosis/lung deterioration is significantly greater.
2. Placement of the trach. This too is going to be VERY difficult. Because of Jophies shape his trach is not near the throat like it should be but rather at the top of his breastbone. The surgeon said this will be his hardest placement ever.
3. Post complications are quite high. Much higher than I would like to see. Because he is already colonized with Pseudomonas his chances are much greater of contracting tracheitis or some other horrible infection in the trachea. Many other complications could arise due to his shape and location of his trachea.
There are many more but those are the major hurdles.
I will have my laptop with me at all times tomorrow so there will be current updates. My MSN messenger will turned on as well as my cell phone for those of you who have access to me that way. Please do not be offended if I do not answer right away or not at all. I will however do my best to keep everyone updated as I am made aware of things.
As I sat here yesterday evening I had a very rare moment to catch my breath. Jophie was sleeping very peacefully. The rooms on this side of the unit had been emptied of all its little occupants all of whom were well enough to return to the safety of their parents arms. Parents who only weeks before were skipping merrily through life never once thinking they would be on this side making life and death decisions about their most cherished possesion all the while entertaining thoughts of life without their child. Would they have believed that just days ahead they would be in this place? Most will tell you no yet here they stand on my side facing some of the very same monsters. They will leave here forever changed because they too have tasted death. They will leave here with a greater love for their child and things that once seemed important will seem trivial. Life as they once knew it will be changed and if asked they will tell you they are better because of it. I don't think there is anything more capable of putting things into prospective than the planning of your own childs funeral. Something I wish no one had to face.
And in the stillness as darkness began to fall I was reminded once again of Gods grace and his presence that is clearly etched in every shadow and orange hue. Just out the window a masterpiece painted just for me and directly behind me lying quietly in his bed another masterpiece created with the very same hands both perfect in every way.
And a few pics from the last couple days of my scruffy steroid moon face boy :0)
Thank you all for standing firm with us and more importantly for Loving Jophie.
All our Love,
Trina and Jophie
Thursday March 5, 2008
Or so it seems......
It started with me and was one nasty bug. Bronchitis, Croup, Sinus infection/ears then pneumonia! I don't get sick often but when I do look out. In fact 3 weeks later I'm still feeling the lasting effects of this..... No worries though this momma will be just fine.
Jophie on the other hand is not....
Jophie began acting ill about 5 days into my ordeal. We took him to see Sherrie his ped on Monday the 25th. She actually tried to put me in the hospital and for once Jophie seemed the healthiest one. How weird is that little twist of fate? Sherrie asked how I felt as far as admitting or going home. I truly felt he was good to come home and the girls and I could treat him there. Sherrie gave him 2 rocephin shots and sent us on our way with a script for a double round of antibiotics. Monday through Wednesday we worked round the clock treating him just as if he were in the hospital and all the while he was making progress.
Wednesday during the day he was just wonderful. Things were losening up and the temp was more under control. Late Wednesday night around 9 p.m. he had what I think was an asthma attack and from there everything went into a tailspin. My worst nightmare was unfolding before my eyes once again.
The next 9 hours continued on a downward spiral as things continued to worsen. By this time I had doubled his steroids, cranked his oxygen to 6 liters, was flipping him every hour along with breathing treatments/CPT and suction all to no avail. With each hour that passed all those supportive measures were becoming less and less effective and at 6 a.m. I knew he was in real trouble. I grabbed a very quick shower and opened the blinds to snow.
UGH....Could I not get a break?
I knew it was going to have to be cleaned regardless. I couldn't get out and an ambulance could not get in so out I went wet head and all. I was really worried I wouldn't be able to clear it all because at that point I was still fairly sick but somehow I managed to not only clear the whole driveway but the deck as well all in about 10 minutes! God musta had his hands mixed all up in that :0)
I get back in the house and he's struggling just to breath. I grab the phone and dial 911 to get the ambulance on the way then I phone Tammy(A dear friend and one of Jophies nurses). I needed her to be on the other line because I honestly feared he would die in my arms. I stood at his bedside with him in a sitting position with legs hanging off the bed and leaning into me all the while dumping albuterol unit doses in continually.
Let me just say this was only BARELY effective. I could NOT get his airway open no matter what. Tammy was my rock on the other end keeping her cool and in turn helping me to keep my focus. I know your reading this Tammy and I know I tell you this often but it never feels like its enough. Thank you so much for all you and your family do for Jophie and I. We couldn't survive otherwise. We love you!
The ambulance finally arrives which seemed like forever. In reality I know it wasn't long but it sure seemed that way. I do hate sending him alone but, there is no doubt in my mind that had we of tried to take him he prolly would have died in the van on the way.
Lora(Jophies other nurse) arrived about the same time as the ambulance. Once they were headed towards the hospital she helped me pack and load everything then followed up and spent the rest of the day with me. Thank you too Lora for everything you did that day.
Needless to say I was a mess and quite frankly still am. Tomorrow will be Thursday and I can honestly say I'm a bit antsy about it. The last 2 Thursdays have been just plain yucky. I hope tomorrow shows no signs of the same.
In case you haven't figured it out....Jophie is in fact in the PICU and has been since last Thursday. It took around 3 hours to stabilize him and I truly thought he would be on the vent when all was said and done. The PICU docs and nurses here are so amazing. They put him on Bipap in an attempt to keep him off the vent. In fact they were concerned as to whether or not they could even get him on the vent due to the progression and severity of his back/shape. This is such a scary thought for me and quite frankly I'm glad I was not aware of it till later.
For 3 days he was quite critical and so very touchy. Everything was messing up. His urine looked like black coffee or chocolate pudding. I've never seen anything like it. His potassium bottomed out and his temp soared all the while he continued to struggle to breath and the bronchospasms he was having were horrid. Each one you truly thought he would quit breathing. He continues to have these bronchospasms. The severity is not as bad but they are still just as forceful and draining of his oxygen and strength. He had one late morning that I didn't think would ever end.
Blood cultures were sent but we were unable at that time to get even a tiny bit of snot. He had absolutely no reserve so we waited. They started him on 3 antibiotics. Vancomycin, Zosyn, and Cephapime trying to cover all bases. The blood cultures came back clean so they dumped the vanc. A central line was placed so he would have good access. At the time he had only 2 teeeny ones in each wrist and both were either leaking or not working properly. While placing the line they tilted the head of his bed back and snot started rolling so they grabbed a sample. It later grew Pseudomonas. UGH! I hate that ugly beasty!
The line placement went perfect and still remains intact and working. One port got a bit sluggish but they hit it with some heparin and its working just fine now. Phew! We can't lose this line. He's still getting lots of fluids and antibiotics round the clock and a couple days ago we started his feeds at a very slow rate round the clock. We had to get some calories on that belly because he hadn't eaten for 4 days. So far he's tolerating this just fine so hopefully we can up the amount at some point.
2 days ago we attempted to take him off Bipap and put him on a venti mask which didn't go over well at all.....He bottomed out on his oxygen sat in about 20 minutes so back on the Bipap he went. Yesterday we tried again and he did much better lasting about 10 hours but he really had to work hard to keep that O2 sat up. He had a horrible night and it took him till around 8 a.m. to recover from it all and then it was time to go back on the venti mask. I was able to hold em off till bout noon which gave him a bit more time to relax. Today he did well on the venti again and slept most of the day. At the moment he's back on Bipap and having bronchospasms off and on but so far he's been able to recover from them on his own.
The PICU docs had a meeting a couple days ago about Jophie and they all feel he would benefit from a trach. Talk about being caught off guard. That was so unexpected and even still I'm trying to wrap my brain around it. The attending PICU doc came and spoke with me again to see if I have thought about it anymore. I did phone my friend Tammy and we talked a bit and then phoned Sherrie his ped. This is such a huge decision and I just don't want to make the wrong one. Today I could sense an urgency in his voice to proceed. They are in no way pushing me which I appreciate but at the same time I don't feel like I can ignore that urgency in his voice. I'd be lying if I said I wasn't scared. In fact I'm pretty much terrified and to boot its coming at the worst possible time. My biggest support system(Tammy and her family) is going to be outta town this weekend and thats exactly when they want to schedule it. Ugh on the timing.
Yep I'm pretty scared.
As of today he's still stable but I would say still in a very guarded state. He's sittin on the fence so to speak. No longer on the critical side but not yet far enough on the well side.
***Sigh***
I absolutely hate making these decisions.
Thats us in a nutshell for the last 3 weeks. Nightmarish eh?
OK gotta scoot. Please continue to pray for Jophie to overcome this bug, for me to make the best decision for him, for the doctors who are and will be involved with his care and this upcoming surgery. Gosh that makes it seem even more "REAL" typing it out.
Will update as often as I can now that I have my computer up and running! Can I just say Broadband....DUH? I had to call Gateway so they could tell me how to turn on my radio so I could receive a signal. Can I get one more DUH? :0)
P.S....I'm not even gonna check for misakes so excuse the choppy mess and pathetic grammar I KNOW Tammy is absolutely cringing over. Don't even lie and say you didn't notice! Your prolly correcting it right now....LOL
Trina
Thursday March 5, 2008
Or so it seems......
It started with me and was one nasty bug. Bronchitis, Croup, Sinus infection/ears then pneumonia! I don't get sick often but when I do look out. In fact 3 weeks later I'm still feeling the lasting effects of this..... No worries though this momma will be just fine.
Jophie on the other hand is not....
Jophie began acting ill about 5 days into my ordeal. We took him to see Sherrie his ped on Monday the 25th. She actually tried to put me in the hospital and for once Jophie seemed the healthiest one. How weird is that little twist of fate? Sherrie asked how I felt as far as admitting or going home. I truly felt he was good to come home and the girls and I could treat him there. Sherrie gave him 2 rocephin shots and sent us on our way with a script for a double round of antibiotics. Monday through Wednesday we worked round the clock treating him just as if he were in the hospital and all the while he was making progress.
Wednesday during the day he was just wonderful. Things were losening up and the temp was more under control. Late Wednesday night around 9 p.m. he had what I think was an asthma attack and from there everything went into a tailspin. My worst nightmare was unfolding before my eyes once again.
The next 9 hours continued on a downward spiral as things continued to worsen. By this time I had doubled his steroids, cranked his oxygen to 6 liters, was flipping him every hour along with breathing treatments/CPT and suction all to no avail. With each hour that passed all those supportive measures were becoming less and less effective and at 6 a.m. I knew he was in real trouble. I grabbed a very quick shower and opened the blinds to snow.
UGH....Could I not get a break?
I knew it was going to have to be cleaned regardless. I couldn't get out and an ambulance could not get in so out I went wet head and all. I was really worried I wouldn't be able to clear it all because at that point I was still fairly sick but somehow I managed to not only clear the whole driveway but the deck as well all in about 10 minutes! God musta had his hands mixed all up in that :0)
I get back in the house and he's struggling just to breath. I grab the phone and dial 911 to get the ambulance on the way then I phone Tammy(A dear friend and one of Jophies nurses). I needed her to be on the other line because I honestly feared he would die in my arms. I stood at his bedside with him in a sitting position with legs hanging off the bed and leaning into me all the while dumping albuterol unit doses in continually.
Let me just say this was only BARELY effective. I could NOT get his airway open no matter what. Tammy was my rock on the other end keeping her cool and in turn helping me to keep my focus. I know your reading this Tammy and I know I tell you this often but it never feels like its enough. Thank you so much for all you and your family do for Jophie and I. We couldn't survive otherwise. We love you!
The ambulance finally arrives which seemed like forever. In reality I know it wasn't long but it sure seemed that way. I do hate sending him alone but, there is no doubt in my mind that had we of tried to take him he prolly would have died in the van on the way.
Lora(Jophies other nurse) arrived about the same time as the ambulance. Once they were headed towards the hospital she helped me pack and load everything then followed up and spent the rest of the day with me. Thank you too Lora for everything you did that day.
Needless to say I was a mess and quite frankly still am. Tomorrow will be Thursday and I can honestly say I'm a bit antsy about it. The last 2 Thursdays have been just plain yucky. I hope tomorrow shows no signs of the same.
In case you haven't figured it out....Jophie is in fact in the PICU and has been since last Thursday. It took around 3 hours to stabilize him and I truly thought he would be on the vent when all was said and done. The PICU docs and nurses here are so amazing. They put him on Bipap in an attempt to keep him off the vent. In fact they were concerned as to whether or not they could even get him on the vent due to the progression and severity of his back/shape. This is such a scary thought for me and quite frankly I'm glad I was not aware of it till later.
For 3 days he was quite critical and so very touchy. Everything was messing up. His urine looked like black coffee or chocolate pudding. I've never seen anything like it. His potassium bottomed out and his temp soared all the while he continued to struggle to breath and the bronchospasms he was having were horrid. Each one you truly thought he would quit breathing. He continues to have these bronchospasms. The severity is not as bad but they are still just as forceful and draining of his oxygen and strength. He had one late morning that I didn't think would ever end.
Blood cultures were sent but we were unable at that time to get even a tiny bit of snot. He had absolutely no reserve so we waited. They started him on 3 antibiotics. Vancomycin, Zosyn, and Cephapime trying to cover all bases. The blood cultures came back clean so they dumped the vanc. A central line was placed so he would have good access. At the time he had only 2 teeeny ones in each wrist and both were either leaking or not working properly. While placing the line they tilted the head of his bed back and snot started rolling so they grabbed a sample. It later grew Pseudomonas. UGH! I hate that ugly beasty!
The line placement went perfect and still remains intact and working. One port got a bit sluggish but they hit it with some heparin and its working just fine now. Phew! We can't lose this line. He's still getting lots of fluids and antibiotics round the clock and a couple days ago we started his feeds at a very slow rate round the clock. We had to get some calories on that belly because he hadn't eaten for 4 days. So far he's tolerating this just fine so hopefully we can up the amount at some point.
2 days ago we attempted to take him off Bipap and put him on a venti mask which didn't go over well at all.....He bottomed out on his oxygen sat in about 20 minutes so back on the Bipap he went. Yesterday we tried again and he did much better lasting about 10 hours but he really had to work hard to keep that O2 sat up. He had a horrible night and it took him till around 8 a.m. to recover from it all and then it was time to go back on the venti mask. I was able to hold em off till bout noon which gave him a bit more time to relax. Today he did well on the venti again and slept most of the day. At the moment he's back on Bipap and having bronchospasms off and on but so far he's been able to recover from them on his own.
The PICU docs had a meeting a couple days ago about Jophie and they all feel he would benefit from a trach. Talk about being caught off guard. That was so unexpected and even still I'm trying to wrap my brain around it. The attending PICU doc came and spoke with me again to see if I have thought about it anymore. I did phone my friend Tammy and we talked a bit and then phoned Sherrie his ped. This is such a huge decision and I just don't want to make the wrong one. Today I could sense an urgency in his voice to proceed. They are in no way pushing me which I appreciate but at the same time I don't feel like I can ignore that urgency in his voice. I'd be lying if I said I wasn't scared. In fact I'm pretty much terrified and to boot its coming at the worst possible time. My biggest support system(Tammy and her family) is going to be outta town this weekend and thats exactly when they want to schedule it. Ugh on the timing.
Yep I'm pretty scared.
As of today he's still stable but I would say still in a very guarded state. He's sittin on the fence so to speak. No longer on the critical side but not yet far enough on the well side.
***Sigh***
I absolutely hate making these decisions.
Thats us in a nutshell for the last 3 weeks. Nightmarish eh?
OK gotta scoot. Please continue to pray for Jophie to overcome this bug, for me to make the best decision for him, for the doctors who are and will be involved with his care and this upcoming surgery. Gosh that makes it seem even more "REAL" typing it out.
Will update as often as I can now that I have my computer up and running! Can I just say Broadband....DUH? I had to call Gateway so they could tell me how to turn on my radio so I could receive a signal. Can I get one more DUH? :0)
P.S....I'm not even gonna check for misakes so excuse the choppy mess and pathetic grammar I KNOW Tammy is absolutely cringing over. Don't even lie and say you didn't notice! Your prolly correcting it right now....LOL
Trina
Tuesday, November 27, 2007 5:12 AM EST
Today is THE DAY!
The installers will be here between 11 and 12 p.m.......We are all so excited for Jophie! At the moment he's managed to giggle himself to sleep while staring at his lights we've got strung in his bed. He does LOVE those lights :0)
Jophie continues to do well. I can't even begin to express how thankful I am. There are honestly no words to describe this feeling. It's just wonderful seeing his smile replaced by those grimaces of pain.
Jophie still has his bad days but as for now he seems fairly stable aside from a little bump on the bum. The little guy is dealing with some sort of vascular growth on his little tooshy. I have no clue what it might be but because of its rapid growth he's going to have to see Sherrie. I hate taking him in that germy office when he's feeling so well respiratory wise. Please pray this little bump is nothing and that those germies stay clean away from my sweet boy!
I still have loads to tell and catch you up on but for now this momma needs to hit the sack. It's almost 4:30 a.m. which means it will still most likely be 5 before I actually lie my sleepy head down.
Oh and to boot! I found out that the media is in fact going to be here along with the installers. Ack! I wasn't expecting them till a later date. Needless to say I've been in scramble mode this evening and into the night.
OK gotta scoot. It's time to hook Jophie up to his water infusion for the night.
Once again I'm thanking you for your persistance as you faithfully approach the throne in Jophies behalf.
Will update with all the Theatre details including Pics!!
Thursday, November 22, 2007 6:35 AM EST
Giving Thanks....... Once again this momma is so very thankful that Jophie and I can spend yet another Thanksgiving together. Oh MY! I do love that boy! :0)
I'm sorry for my unexpected long absence. I truly needed this time alone with Jophie. I will be back in full swing filling you in on all the dirt! So much has happened so we do indeed have some catch up time in store!
Just not tonight :0)
Now.....
GO....
Enjoy the Parade.....
Make some memories......
Be Thankful for your family and for THIS DAY....
May all your tummies be full and for heavens sake make sure your britches have elastic! :0)
Have a wonderful and Blessed Thanksgiving my dear family and friends.
Saturday, October 20, 2007 5:00 AM EST
Jophies Night Out... We don't get out too often Most of our outings entail a visit to the doctor, medical procedures/tests or worse hospitalization but thankfully this trip involved none of the above. Jophie had been having a really good day Thursday. He was sooo chilled. All vitals looked good and he was full of smiles all day. We had been preparing ALL DAY because well thats what you have to do if you go anywhere with Jophie. This is NOT an easy task By evening I was preparing his evening medications/feeding/Water infusion/tubing/syringes so this could all be placed in a small cooler. I also packed some emergency meds to cover all possible complications while we were out. Now all that was left for me to do was shower and wait for Tammy(dear friend/nurse) to arrive at 7 p.m. You truly never know what to expect when planning/traveling with Jophie. There are always surprises around the corner so needless to say I was a bit edgy. I wanted this to be a fun, relaxing trip for him. More than you know. Tammy arrived and we got him ready. We started out the door and he started. Stridor, agitation and then a full blown asthma attack! I almost said "forget it" I'm so glad I didn't! :0) The Destination: To pick out the larger portion of Jophies Wish. You see we had to take Jophie and let him actually sit in the theatre seats to see what would work best for him because of his back and limited ability to sit unassisted plus, we had to let him look at the tv screens to see which one he could see. Jennifer(Jophies Wish Rep) had arranged in advance with Debbie(the manager) to meet after closing time. I was so thankful they were able to accomodate us. When we arrived I had Tammy start Jophies meds while I went in and spoke with Debbie. It seems she has 2 family members that are immune compromised so she was very aware of the dangers to Jophie. She was indeed prepared for us! She sent everyone home except 2 employees who were very healthy. I can't express enough how much I appreciated them taking such precautionary measures. And then she says: "Jennifer said to pick whatever you want." Be still my heart...Did I just hear what I think I did??! I went back outside to pull the van closer to the front door and to begin unloading Jophie. This was a bit traumatic for Jophie as we were sitting at an angle which in turn caused us to transfer Jophie rougher than what we like. Can I just say I HATE our lack of safe/convenient/efficient transportation and or transfering of Jophie from van to chair. He always seems to get hurt and it just KILLS me! By this time I was even more worried that this trip had been a mistake. UNTIL..... We walked through those doors and let me tell you....I have no clue what it was about this place but he immediately calmed down. In fact you would have thought we had brought him to an amusement park. He was so fascinated by Big Sandy. How funny is that??! Let me just show you how much so..... Jophie seeing the Big Screen for the first time. Take me to your leader! LOL He sat like this for the longest time just staring and the best part.....It was a football game! Ah yes he is his mommas boy! :0) Well alrighty then I guess he's chosen his tv. That was easy so lets move on to the next phase. We headed towards the Theatre/Surround Sound packages and as we turn the corner........Everywhere you can see there are TV's! Rows and Rows of them..... ON. HIS. LEVEL. This was even more adorable! He had this look like......"OK can I have a wall like this at home" He just kept looking from one tv to another. Thank God they had the same thing playing on every channel or I think it woulda pushed him over the edge with so many choices! LOL While he continued to drool literally over his newly discovered love for electronics, I stood off to the side and was just bursting with pride at my boy who clearly LOVES all things electronic as much as his momma. He's just like me folks and I LOVE it! :0) OK next came the Theatre/Surround Sound package. The sales rep cranks up the sound and I kid you not.....Jophie was shakin in his chair and I looked like I had ants in my pants. He kept lookin around like Wow! "What kinda ride is this?" And ya know what....I could see in my boys eyes that he was growing to love this place even more. Once we had all the electronics squared away we had to pick some seating. The theare seats were nice BUT, they were too big as in wide. The arm rests were pretty much non-existance which meant Jophie would have no support sitting up. Just when I thought all hope was lost I turned a corner and saw.... "The chair" A chair like no other! This was a big ole' smoooooshy/marshmellowy/leather chair. Oh I just had a feeling. My gut was telling me this was the chair. The true test would be when we sat Jophie in it. Need I say more?? THEN I look over and see this: All righty then! He's chosen his chair! This chair even goes all the way back like a bed and the best part is his back just sinks back into that leather and it doesn't hurt him. He's gonna love it! As we were leaving we caught him peeking at his tv again. How cute is that?? All and All it was a productive and fun evening. The only thing left to find is theatre drapes, lighting and a cotton candy machine. I'll get right on that Monday. And if by chance your sitting there thinking how weird we are for liking a trip to Big Sandy. It's OK. Really. I suppose we are weird and ya know what? I wouldn't mind calling up our new friend Debbie to see about spending another fun filled evening(after hours of course) in mine and Jophies new favorite vacation spot. And don't you be surprised if one day your browsing Big Sandy and you see this momma and her son all stretched out on those big comfy chairs watchin one of those big honkin screens! Be sure and say HI when you pass by. Now pass the Cotton Candy please :0) Jophie continues to do well. We are 5 days out since the last dose of antibiotic. We haven't gotten his sodium level yet. Labs were drawn Wednesday but the sample hemolyzed. This was repeated on Friday with results pending. Upset tummy, persistent stridor and bathroom woes continue to plague him. For now we soldier on and continue claiming this verse. God promises us in Isaiah 43:2 that "When you go through deep waters and great trouble, I WILL be with you." Once again I have to stand on this promise and KNOW its true. I have to believe it will all my being. There is no room for doubt. Thank you once again Casting Crowns for this song and others that continue to be a soothing balm for my soul. OK gotta scoot and yet again this momma wants to thank you from the bottom of her heart as you faithfully approach the throne in Jophies behalf. Looking upward! Friday, October 12, 2007 Make a Wish It's Wish Time! :0) Tuesday, October 9, 2007 3:15 AM EST We're home and boy does it feel good! Wheeee! :0) But...... This momma is playing Pollyannas glad game! Now isn't that MUCH better than the last pic I posted? OK gotta scoot! Thanks again for all your prayers as you persistantly approach the throne in Jophies behalf. I appreciate it so much. Saturday, October 6, 2007 In case you haven't figured it out we are in the hospital again and have been since Wednesday. Jophie was doing very well. In fact I had just made the comment that I felt as though "finally" we've made it out of this storm then next thing you know we're dodging lightning bolts and twisters all over again. I took this picture right when we got home from Sherries office Monday evening. Before we left her office he was acting "odd". Before we got home we had to give him tylenol to try and calm him which didn't even begin to touch his problems. I transferred him to his bed and checked his temp which was 101.2 and he was setting his monitor alarms off with a 188-200 heart rate. This was all so frustrating and odd at the same time. He was in wonderful shape until we took him out. We do keep his environment very controlled inside but I have no control over the outside environment which lately seems to just make his body go haywire. Please bear with me as I talk my way through this. I need to do this for many reasons but mostly so all these thoughts/symptoms can be in one place in the hopes that maybe I can piece this together or better still someone reading might say, "Hey, I know whats going on". The last 4 days I have been cramming my brain with as much information as I can concerning Hypernatremia that is after I bout ripped my hair out the first 2 days trying to stay online! It musta been a server problem but I like to think I'm some big computer guru so for now I'm saying I fixed it. :0) OK.....Lets start with a definition because thats where I started. The normal concentration of sodium in the blood plasma is 136-145 mM. Hypernatremia is defined as a serum sodium level over 145 mM. Severe hypernatremia, with serum sodium above 152 mM, can result in seizures and death. As you can imagine my mind is all over the place trying to piece this all together. I have lots of questions and unfortunately there aren't too many answers and that drives me crazy or should I say even crazier than I already am. :0) I've picked my brain to death trying to pull clues from what I've observed over the last few weeks. I've even went back over a year because honestly he's been having problems for over a year now. Here's where I begin to ramble on and on which I've been doing for days but now the only difference is I'm making you listen to. How long has this been going on? Is it possible that this is whats been wrong for over a year now? He presents with dehydration almost every hospitalization even when I think he doesn't appear dry to me. He's been spiking temps for over a year in which some are related to infection but other times we just scratch our heads. Both the dehydration and the temps are symptoms of hypernatremia as well as seizures/seizure activity, jumpiness and one of the scariest ones is paralysis of lung muscles. Umm duh....His lungs are so compromised to begin with so can't you imagine how much trouble he'd have with this going on?? Could this be the source of all his pain over the last few weeks?? Now am I just crazy or does this scare anyone else?? Maybe I'm just being a wacked out anal mom?? I find myself questioning my sanity all the time especially when the docs don't seem as alarmed as I. Often I wonder how much they really do know about something unusual? Do they go and look it up to prepare themselves so they can care for the patient better? I know I would for sure especially after dealing with Jophie all these years (who does not follow the book by the way) it tends to make a person a bit more cautious ya know? The plan so far is to continue lowering his level with the fluids and pushing more free water via his Mic-key button. Course he has to be poked to death to get those levels. He started at 157 then dropped to 153 then to 151 and hung out at 151 then finally Friday it was 144 which is within normal limits but still on the high side and now this morning....well yesterday morning he was back up to 151. Crud! We actually were leaving Thursday but the Xray showed a probable left lower lobe pneumonia. We had to repeat that Xray twice and still they aren't 100ure. I know your probably thinking why in the world can't they read an Xray?? Jophie has a more than 90 degree kyphotic curve. You don't have to know anything about Kyphosis to know that more than 90 degrees is a kiss your butt curve. Now let me paint you an even clearer picture. There's only one way to get an Xray of Jophies lungs. He can't lie flat on his back so I sit him up in bed on the side with his back to me then I place the film between my stomach/chest and his back and lean forward holding it in place then I have to pull his arms that are contracted up, back and to the side and still its not great. The reason he had so much trouble reading this one is because Jophies heart was in the way and no need to rub your eyes because you absolutely read that right. He is so curved that while sitting up his heart shows up in the lower left lobe of his lung. I know it makes me blood run a bit cold each time I hear it too. I started this morning by trying to double his free water which would be 120 ml after his feeding. The nurse then came in and said the doc had written orders to do exactly what I was doing. That morning I was actually able to add 140 but by lunch he was drowning. He is very volume intolerant and with his lung problems if you feed him too fast or too much liquid he just drowns. It's really a touchy balancing act at best and thats when things are working properly. At the moment its going on 5 a.m. and I still haven't given him all his last meal nor have I started his free water not to mention I'm already short 120 from earlier in the day. At this rate I'll be up 24 hours a day but if it works it'll be worth it! Tomorrow at noon they are going to check the level again. I sure hope all this work I've done this past 24 hours has paid off. If not then they need to start checking underlying problems involving the endocrine system and all hormone producing glands. We do know his adrenals are bad so it wouldn't surprise me if something else is as well with the steroid use. Please continue to keep Jophie in your prayers. I'm also dealing with some things that should not even be an issue but are. It's literally driving me batty and I honestly don't have time for it but it's something I can't ignore either plus Monday the docs trade off. Each of the peds docs rotate as attending on the floor for 2 weeks at a time and just so happens the one coming on Monday I have issues with. I'll not go into details but it's a very horrible situation which once again I shouldn't be placed in. And last we have a tentative date for Jophies annual fundraiser on October 21'st. I wish he could go but I'm afraid it's too late in the season to expose him to the germs that are raging. Sincere will be singing for us once again. I'll post all the details once they are all confirmed as well as contact numbers/emails in the event you are local and would like to help in any way. OK...my eyes are literally slamming shut. I need to get up and move around to stay awake so I can finish his food/water. Thank you all for your continued prayers. I appreciate them so much! :0) Weary but not broken....... Monday, October 1, 2007 1:00 A.M. EST But once again.....
Jophie and I.... 
The Purpose: 
This was so cute! His mouth gaped open and staring like he was seeing aliens. 
I have to Praise him even in the Storm and it does indeed seem to be letting up! :0) 
Make a Wish contacted me to say they were ready to begin Jophies wish next week. A painter is coming by to discuss colors. He knows we are converting the living room into a theater so basically he just needs us to pick a color and to get ideas on how we want it to look.
I have a few color swatches that Katy(friend/Jophies Aide) picked up and I think I've narrowed it down to about 5 colors. It's been so long since I've been to the movies that I've forgotten what the inside walls look like. I know they use a darker color and if my memory serves me correctly they usually have it painted in a burgandy/maroon/purpish/rusty/redish color depending on the theatre.
Jophies wish representative is so sweet and is working so hard to make this perfect for him right down to the smallest details. I can't wait to share pictures when its all finished.
One thing we need to do soon is take Jophie to Big Sandy. They are putting in theatre seats only not the hard backed type. These are more of a recliner style but, because of Jophies back we need to physiclly put him in each style to see which seat is going to work. I'm hoping by reclining the seat a bit he will be comfy. The only other thing would be to decide on dual or single seating and once again this will all be up to Jophie. :0)
Our plan for now is to call Big Sandy and explain the situation including his compromised immune system. We hope they will be willing to let us come after they have closed for the evening. Lets hope they will agree!
Now I need to go finish up what I've been working on for the past few days. We have to clear all we can out of the living room so they have room to work. At the moment it looks like a tornado has been spinning around in there! No worries though cause this momma will Git R' Done! :0)
Jophie still has a few more days of antibiotic and he's still looking good. Next Wednesday is bloodwork to re-check his sodium level. Please continue to pray that the sodium level in his bloodstream is normal and above all pray those germies away from my sweet boy.
This momma thanks you from the bottom of my heart for your persistance as you continue to petition the throne in Jophies behalf.
We actually got home Sunday evening then had to go right back to West Virginia today for a followup appointment so we could get all our ducks in a row.
Jophies Hypernatremia is still an issue but at the moment its stable. On the high end but stable. Normal range is 130-145 and as of his dishcarge from the hospital Sunday he was hangin out at 145. I'm having to push 120 ml of water after each feeding just to keep it in check. He is very volume intolerant so its taking me 24 hours a day just to fit it all in. Phew!
I do have a plan though.
Well you knew I would right?? :0)
I have a window from about 6 a.m. to 9 a.m. where I can sleep. As of now I can't because of fitting in all the water around the feedings. I had Sherrie(his ped) write a script for a feeding pump. Now this is going to be tricky to get this paid for because he is already being bolus fed using tubes and syringes. It actually takes around 3 hours to feed him because he can only tolerate about 20ml(4 tsps) every 20 minutes which is why I don't pump feed his food not to mention it makes him sick to have that heavy formula lying on his belly all the time.
OK so the state says you can have only ONE of the 2 choices for tube feeding not both.
SO, being the sneaky one that I am and knowing how those coniving folks work up there I had her write it not for formula feeds but rather water treatments due to high doses of sodium in the blood with the diagnosis of hypernatremia. Well they'll glance at that and not even bat an eye cause it says NOTHING about formula or regular feeds! It's all in the wording folks. Now lets pray it works! :0)
He also had a lower left lobe pneumonia which I think was at the same time as the lower right pneumonia he had a couple weeks ago. The Xray showed it as stable and improving which I don't doubt because he was getting better that way. His Mic-key sight did grow enterobactor but with me changing out the button plus being on the antibiotics already we think thats resolved as well. The sight looks just fine. His little bum is all raw/bloody again from the poooey which is most likely antibiotic induced. He still has to take the Omnicef but, only through Saturday and that will be it on the infection front then hopefully his bum will start to clear. It looks better today but Lordie bee what I have to do to keep it that way! Just call me the poop police! LOL
Tomorrow I have a bazillion people to call....
I'm so thankful we are home and even more thankful that he's finally looking more like himself. :0)
Here's a pic from early Saturday morning at the hospital.
Let me just prefice by saying I still believe we are making progress. Overall on the infection front we've got the tiger by the tail so to speak however, we now have this darn hypernatremia to deal with.
Look at this picture. Is it just me or can you see how swollen his face looks??
Jophies level was 157 when we arrived at the hospital and suffice to say he was very ill. Once the labs showed such a high number they triple checked it then swapped his fluids out for a cocktail that slowly reduces the sodium with slow being the key. IF you drop it too fast it can cause cranial hemorrhage and that my dear friends is when I decided I'd better educate myself a bit more on this little problem.
I say "Amen"
And it's still raining - 
Friday, September 28, 2007 2:17 AM EST
We are home! Aside from the fact that they have a brand spankin new CD called The Alter and the Door which is amazing in and of itself but they also have some great oldies as well! One that is still a favorite of mine. Even in the roughest spots and yes even when we're covered in poop..... If you've not heard it I know it will bless your socks off :0)
We actually arrived home Tuesday night. The ride home wasn't nearly as exciting as the ride to the hospital a week ago which I still need to tell you about however, I figured a Jophie update was in order. Believe me when I manage to get it all from my head to this page....It will be worth your wait. :0)
About 3-4 days into the hospital stay Jophies cultures finally spit out the info we had been waiting on. Klebsiella and Strep P. were the culprits. It seems this time those nasty bugs took up residence in his bladder/kidneys. Nice. Once the sensitivities were found they started him on Rocephine which he received via IV for the next 3 days. He was then transitioned to oral Omnicef via his Mic-key button. This is suppose to be comparable to the IV Rocephine. I'm praying it works as well.
After about 2 doses I began to see Jophie improving. The docs repeated all basic labs, cultures, X-rays several times just to make sure nothing was sneaking up on us. It's really a daunting and frustrating task to diagnose Jophie. You sit and watch him in pain knowing its "something" but what is always the question. Yes there are times its very obvious where the pain/problem is coming from yet more than not you have to play detective. It's just like treating an ill baby who can not speak or make their needs known. As his mom this is one of the biggest things(Aside from pain managment) that puts me into orbit. It's almost more than I can take at times. For the most part he has a very high pain tolerance but this time he was tasked to his limits. If only I could take away his pain. I'd gladly bear his burdens......in a heartbeat.
I do honestly feel like we are making headway even if it doesn't appear that way looking from the outside in. I liken it to a raging forest fire. To actually put out the whole fire you must begin with the small brush fires working your way to the source. For the last 6 weeks we've managed to snuff out our share of little brush fires but now its time for that raging forest fire to go pooof! See ya! Please pray with me that this antibiotic will snuff out the last of these nasty bugs.
OK we now have a plan and its working. You know what that means? Time for Jophie and I to blow this popsicle stand! And thats exactly what we did! Tammy(a dear friend and Jophies nurse) arrived to help us home. Because of our exciting adventure to the hospital we were a bit nervous about the trip home fearing it may be a repeat. It wasn't as bad but an adventure still the same! :0) I realized immediately that last I looked at my gas gauge it was dipping very near "E". Skeeery. As we crossed over from West Virginia into Ohio I'm certain my little ole van was sucking fumes to get us to the gas station! hehe.....We indeed made it and thats all that matters! Next stop was for food since we realized we hadn't eaten. Course we still couldn't eat but at least we could smell it all the way home. LOL
So, I'm driving along in my own little thoughtful world when from the back I hear.....
"Houston, we have a problem"
What? Ugh do I even want to know? Please just tell me we don't have to go back to that blasted hospital????
Tammy: UM....Do you have any chucks up there?
Me: Um yea I think I can reach them...Why?
Tammy: Well I just moved Jophie to make him more comfy and well.....there is poop coming out the top of his shorts and its on your seat too.
Me: Nice
Me: Poor little guy..I know he can't help it but UGH
I toss back a couple chucks then I hear....Ewwww!
Me: What?!
Tammy: I stuck my hand in it!
ROFL! Ok so I couldn't help it. Then we had to try and find the antibacterial gel "somewhere" in the van.
And ya know what....
We DID find it cause we are handy like that. We may have a chaotic life and things may just seem "poopy" most of the time but by golly we can find the chucks, the germ-x and anything else you please all while driving, tube feeding, medicating, suctioning, repositioning AND cleaning up poop!
In fact we can even praise him in this storm. Oh yes we can!
You ever heard of that wonderful group Casting Crowns
"Praise you in this Storm" speaks so loudly of our journey.... Jophies journey
I know with all my being....Without a single doubt
We are NOT alone
God promises us in Isaiah 43:2 that "When you go through deep waters and great trouble, I WILL be with you."
Once again I have to stand on this promise and KNOW its true. I have to believe it will all my being. There is no room for doubt.
I have to Praise him even in the Storm
It's a beautiful song. You can listen to it here from my dear friends sight The Bowens
So there! I will not let Satan steal our joy!
Now this tired momma is headed to the bed cause I still am "pooped"!
Hahaha.....Get it? Pooped!
Friday, 21, 2007 4:32 P.M. EST
Cabell Spa Just a quick update: Jophie is in the hospital again. We've been here since Wednesday night. So far we are unsure of whats going on. My gut tells me its related to what he's been dealing with but I'm not 100 ure. He is getting fluids for dehydration from the severe diarhea he's been having. It's not as bad as it was but still continues to be a problem non the less. Thats all I know so far. I need to go because at the moment I'm slowly giving Jophie some oral radioactive dye through his feeding tube so everything will light up on his scan. Specific prayer requests: I'll try and do a more in depth update this evening as time permits because let me tell you....our adventure just getting here is nothing short of pee your pants laughter! Can I just say call security/intruder alert, location changes, CRATER pothole, lift woes, flying reindeer, creepy strangers in dark parking lots and wildcat in a bag?? Ah yes you musn't miss this update. :0) Current updates can also be found here Tuesday , 18, 2007 11:34 P.M. EST THE END...... Jophie does look better. In fact he seems better to me than he has in a long time. He's still struggling with all the side affects of such strong antibiotics and his hair is falling out bit by bit. It's so thin I can see his scalp through his hair and he barely has any bangs left to speak of. This may sound stupid but I was so sad to see this happening. Jophies hair has always been the first thing people comment on and the first thing they touch. Most any girl or woman for that matter would kill for his hair! Only for a moment did I feel this way and then.....I smacked myself right outta that whiney boooo hooooey woe is me world and right back into reality! Hair is just hair....nothing more. He could be slick head bald for all I care because you know what..... HE'S ALIVE! Jophie has fought his way back to the top once again triumphet! He may be a bit banged up and yes, he's sporting a few more scars and bruises and less hair but, he's here and in the end thats all that matters! Hair is really over rated ya know :0) Now to get some rest for this weary body. I can't believe its only 4:00 a.m. and I'm done! I just finished up Jophies last tube feed and last meds for the night! Dare I even whisper the words?? 4 hours of sleep IN. A. ROW. folks! Count em! F.O.U.R.!!! Wheeee! See ya! Zzzzzzzzzzzzzzzzzzzzzzzz Saturday , September 8, 2007 3:05 P.M. EST SOLDIER ON... Wednesday Katy and I took Jophie for his post hospitalization followup appointment with Sherrie(his ped). He is always so happy to see her and will begin smiling immediately when he hears her voice. He works doubly hard at flirting in an attempt to win somes snuggles or better yet to land a big fat kiss! He's quite the ladies man when it comes to pretty women however, he does prefer dark hair over blonds. I just love that he has opionions. :0) The plan for now is to continue the IV Zosyn and Vancomycin through September 16th and from there we will decide whats next based on how he is doing. I'm praying we will see a much improved Jophie so we can pull that PICC line and get back to "our normal"! He does afterall have some catching up to do in the form of swinging outside so bring on the cooler weather! But for now....... We Soldier on..... Monday, September 3, 2007 5:50 AM EST It was nearly time for many of the departments in the hospital to close meaning we would have to repeat this whole process over the next day. Ugh...I was just sick thinking about it. Many things would have to fall into place for this to happen "now" and it became apparent very quickly how much these people love Jophie. Jophies Bug Collection:
So far what we know.
Leavin ya with this mug shot from just a few days ago. At least he got to swing a bit before he landed back here. ~~sigh~~
http://jophiesjungle.blogspot.com/
It's been exactly 24 hours since I hung the last 2 doses of Jophies antibiotics and, in less than 6 hours a nurse will be here to draw labs and pull that PICC line!
Wheeeee!
I'm so excited yet scared at the same time. We've been "at this point" before only to have to begin all over. I'm believing with ALL MY HEART that "this time" it has worked!
By looking at this picture one would think he was less than thrilled to be here when in reality he was actually quite drugged. We have to do this so he is able to travel. Regardless he's comfy and happy and in the end thats all that matters. 
We're HOME!
I can't tell you how thankful I am to be home. I'm even more thankful that this little stay only lasted one week. Those 6 month hospital stays are for the bears I tell ya!
Wednesday afternoon around 3-3:30 someone from the PICU came to get Jophie. We wheeled him over and got settled in a room. One of the new PICU docs looked Jophie over to see if she could see any easy access sights for the new PICC line. Unfortunately she was unable to see anything that she felt would warrent a good stick. We decided it would probably be best if we let radiology have a try with all their fancy equipment which helps them see to guide that line right in.
They really do love him!
As soon as they took him back I hopped on the elevator and headed back up to the Peds floor to take a quick shower (a much needed one I might add). I figured it would be a bit longer because they usually let him hang out in recovery for about 30 minutes to wake up so I headed back to our room to straighten up a bit. I phoned Tammy(one of my dear friends) to let her know he was in and to pray the procedure went well without complications. Next thing I know I see them wheeling him back into the room! Wow! Thats service with a smile for ya! :0)
They were able to slick that line in very quickly and with no problems at all. I will admit I was a little apprehensive because if you'll remember that last PICC insertion sight looked very angry. I'm happy to report this time it looks much better!
By Thursday morning things we're looking really good for us to come home. The only thing we were waiting on was sensitivities to 2 of his bugs. He is afterall a pretty good little "Bug Collector" wouldn't you say?
The boys gots SkillZ I tell ya! :0)
Late Thursday evening the sensitivities came back and thankfully the Vancomycin and Zosyn would cover them all. Speaking of there were 4 bugs total that he grew.(Just in case you were wondering)
See I told you he was a skillful little bug collector. :0)
Once we realized that ALL those buggies were covered we were good to go! Tammy called to make sure the plan was still a go then started towards our way. Her hubby was going to drop her off so she could help me load him and ride home with us. This was one of her normal work nights anyway so it worked out perfectly.
It was nearly 11:00 p.m. when we pulled into the driveway. The neighbors met us with a boatload of IV supplies and meds that had been delivered around 5 that evening. I'm so glad they were home to receive these because Jophie needed them immediately when he arrived home. He can NOT miss a dose of either one.
The bugs Jophie has are very dangerous and very capable of killing and believe you me I understand this all too well so please don't misconstrue my humor for ignorance. I only laugh to keep from crying. When it comes to Jophie I've always chosen to accept and face each crisis head on. I've found it much easier to stare these situations right square in the eyes because then I know without a shadow of a doubt, no matter the outcome we're"fighting back" with all our might.
As long as I have breath in my body I will continue to face these monsters head on with him!
Who ya gonna call?!
"Bug Buster"!
Yep! I'm Jophies resident "BUG BUSTER!" :0)
Speakin of.....I just finished up his last round of "Bug Juice" for tonight. The clock says 6:05 a.m. which means I've gained some ground in the form of 1 hour! Oh boy do I ever have to get this drip rate ironed out! Course that little dilemma is gonna have to wait for another day because this "Bug Buster" is still running on very little sleep.
Stay tuned for "Bug Juice" part II!
Monday, August 27, 2007 3:08 P.M. EST
3RD UPDATE: AS OF TODAY Wednesday 8/29/2007 It's just now noon and Jophie is snoozing beside me. This is good because they held all his feeds starting at 9 a.m. this morning. The plan is to place the new PICC line this afternoon which is why he's NPO. We did run into a bit of a dilemma as one of the PICU docs was leaving and you need two for the procedure so their new PED anesthesiologist is coming up to assist. They will be moving him to the PICU. They generally do all the minor surgeries in the treatment room on the floor but because she is the only PICU doc on right now we're bringin him to her! :0) Once the line is placed he'll stay in the PICU just a bit for recovery then he'll come back out onto the regular floor. Tentatively the plan after that would be to get Home Health and Infusion Solutions set up. This shouldn't be a problem as he still should be an active patient with both places from the last PICC line. My girls are already in place. Aside from any complications I think we are looking at tomorrow evening going home. YAY!! Staphylococcus Ominus in the blood from the PICC line sight The tip of the line still hasn't grown anything and we hope it stays that way. His sodium is back down to normal Electrolytes are back to normal Heart rate, pulse, blood pressures and SATS are back within normal limits Temps are still fluctuating a bit but thats to be expected And he's smiling more :0) The pain management is still an issue so we continue pain meds every 6 hours. This is however an improvement down from Q4 hours. New Blood cultures were just drawn a few minutes ago to see how the meds are working. We were still unable to get sensitivities on a couple of the bugs but based on the way he is acting we feel he is covered. In the meantime they will continue growing out what will and reporting back to his doctor. He will be going home on Zosyn, Vancomycin and hopefully the IV form of Beneadryl for 14 more days. He has to be pre-dosed with the benedryl before the Vanc. regardless and the IV form would be so much better for him. He alredy takes a boatload of drugs all day long which just reaks havoc on his gut so we try and spare him as many as possible if there's an alternate route. From there we go see Sherrie(His ped) and hopefully all will be well by that point! I'm not sure of the exact time of his surgery only it will be this afternoon. It's now almost 1 p.m. Thank you all for your continued prayers. Please pray the doctor can get the line in barring any complications. Now off to find me some grub! 2ND UPDATE: His PICC line grew out something this morning which is 72 hours from the time of the culture. They just pulled his old PICC line and placed a regular IV. We have to run antibiotics through it for 48 hours to try and rid his blood of the infection then they are going to place a new PICC line. They also sent the tip of the line to be cultured so we will know exactly which bug and in turn that will help them choose the right antibiotic. We are still using the Zosyn for the Pseudomonas and the Vancomycin for the line infection but they need to make sure that whatever bug grows that it is sensitive to the Vanc and if not figure out which one will work. Will update when I know more. Monday, August 27, 2007 9:53 A.M. EST> UPDATE: Now we are in a holding pattern of sorts. They are running a test to determine if the Staph that grew in his blood is contaminent or if he really does have a blood infection.( I pray not) They are also running sensitivities to antibiotics to make sure the ones we are using are still sensitive and effective against the Pseudomonas plus they have to check sensitivities to the Strep Pneumonia and Blood infection as well. If the sensitivities remain the same then we are going to keep the Zosyn and most likely add the Amikacin back on board so that darn Pseudomonas is double whammied! We are also keeping the Vancomycin until we figure out whats going on with that blood infection. Saturday, August 25, 2007 8:37 EST We're at the Cabell spa....Blah!
As far as the bugs he has an active Pseudomonas which is a given
Strep Pneumonia
Staphylococcus epidermidis in the blood from the peripheral sight
As of today this is what we know.....
As you know Jophie had a PICC placed 3 weeks ago and was put on IV Amikacin. I've ran those at home for the past 3 weeks and just finished up his last dose on Monday. We were to keep the line in place for 1 week to watch him and see if he acted better or to see if the Psuedo was still rearing its ugly head.
Seems it's not giving up that easy. It never does. So, here we sit waiting on cultures to make sure it has not mutated and that all the original antibiotics from 3 weeks ago are still sensitive to it. In the mean time they've started him on Zosyn which he's had before and Vancomycin to protect him in case there is a line infection which I seriously doubt.
Last night he had a terrible reaction to the vanc but this type of reaction is not considered an allergic reaction but rather "just a reaction"....clever wording eh?
Regardless the kid was as RED as an apple from the top of his scalp to about his chest otherwise known as "RED man syndrome"....Yet another clever use of words. :0)
He also went absolutely ballistic....Kicking, screaming, laughing uncontrollably(He does this alot when he's in pain because of the wires crossed in the brain) They gave him IV benadryl to counteract the reaction and now have to pre-dose him 30 minutes prior to each dose.
Course it blows my mind that the benadryl didn't zonk him and whats even crazier is the amount of drugs he had at one time with little to no effect. Tylenol(normally zonks him), Zofran(definitely zonks him), Klonopin and Tegretol which are regular meds but still make him drowsy and his beloved steroid which really chills him. Well he would have no part of it! You would have thought we had given him a candy cocktail. Finally around 6ish a.m. he settled but not before he had wrestled me into a frazzle. Phew!
He did do much better with his second dose today however, now he's sleeping for all its worth going on 11 hours now. Thank God because I don't think these weary bones are quite ready for another wrestling match so soon and with no sleep!
My hope is that the cultures from the line will be fine and we can drop the vanc.
At the moment we're waiting on peeeee to rule out a UTI which is really unlikely but they like to cover all bases so they don't miss anything. All the testing is bothersome at times but I'm thankful they are so detailed and aggressive in treating him.
Today my plan was to go home and just run the antibiotics from there again but, the plan has changed a bit. Honestly I really think the plan never changed. More likely I have been gently hornswaggled as they very cleverly eased me right into this little hospital stay without me even realizing it. It's a consipiracy I tell ya! LOL
In all fairness I am VERY resistant these days when I hear ANY word or group of words resembling (hospital stay, overnight, just a few tests) Ah yea right! It's that darn Post traumatic stress and honestly I just can't help it nor control it. I just want things to be normal again. Well not "normal" in the true sense but "our normal".....
Oh well I digress.....
For now we will be spending another fun filled night at the Cabell Spa and I'm happy to say with a full belly thanks to Lisa and Jennifer! Thanks girls it was delish!!
Will update again when I know more...
Last night:
Note the "REDman" beginning to show itself and how bout those new fashion accessories?? It's something new they are doing here and quite honestly I find it hilarious. Can you see the barcode on both bands? And what do you do with a bar code?? Scan it! OK Jophie has been scanned so many times in the last 24 hours that I seriously think I'm hearing him BEEP when they scan now! EVERY SINGLE person that has anything to do with him HAS to scan him. Hilarious I tell ya. LOL
Wednesday, August 8, 2007 427 AM EST
Too Pooped to Pucker... Yawn...... See how much better!? You can really see the difference when you compare it to the first picture I posted the evening of his surgery. He's also resting much more peacefully and his vitals are slowly going back to his norm. See how peaceful? I just LOVE cuddling up with him when he's like this. He's like a big ole Teddy Bear and just snuggles right up to me :0)
Can I just say I'm tired??
Extremely tired and I see no end until at least Saturday.
Last week one of Jophies Aides went on vacation and will be this week as well which leaves us winging it alone Tuesday and Thursday. Another one of his Aides is starting her vacation beginning Friday so we'll wing it alone that day too. Saturdays Aide should be here aside from any unforseen problems and I can't wait so I can sleep!
I honestly haven't slept much sinch he had his PICC line placement surgery. It's not that its hard maintaining his line in fact, I think its a piece of cupcake! Jophies schedule is just so demanding to begin with and when you add anything else it just becomes that much more demanding.
No worries though cause I'll Get R' done! :0)
Jophies arm remains a bit sore but nothing like those first few days. The bruising is looking better by the day. 
At the moment I have his last dose of "Bug Juice" for the night hung and its slowly dripping into those veins. Now kill those buggies! I've also got him hooked up to his last tube feeding and last round of meds for this 24 hour period. Now if only that timer would go off so I can finish up!
Ahhh! Ding Ding Ding! It just sounded. Woo Hooooty! That can mean only one thing.
I get to SLEEEEEP!
Now off to unhook him from all his goodies then off to slumberland I go. :0)
Thank you for your continued prayers. We appreciate them so much.
ZZZZZZZZzzzzzzzzz
Wednesday, August 1, 2007 6:35 EST
Jophie came through the procedure just fine. The actual surgery only took about 30 minutes followed by 30 minutes in recovery. They did have a hard time placing the initial IV that would deliver the sedation. He was a bit dehydrated like I expected so the veins kept blowing that is the ones you could see. I'm so thankful it only took about 18 attempts and of course Jophie is always so good and never even whimpers. It kills me to watch him suffer so but bless his heart he's just so used to all this it has become second nature to him. After recovery we went straight to the peds floor into a negative air pressure room which protects him against germs. They are so good to him! The first dose of antibiotic arrived in the room quickly and he had no adverse reactions to it! Praise God! The first night we were home this was about the only position he was comfy. He's happy on his left side as well but after so long even that gets sore. One thing I find just adorable is that he and the IV pole have become best buddies! Jophie is visually impaired so he doesn't see well. The first time I pushed that thing near his bed he just started grinning and talking to it. Well not talking like you and I would but rather "Jophie talk" cooing and jabbering just like a baby would. It think we should name it and give it a hat. What do you think? LOL 3:00 a.m. Gettin me some Bug Juice and talkin to my new buddy FINALLY! Some relief! We finally managed to get the tylenol going round the clock and he just crashed from exhaustion. Party Time! I think this was around 4:00 a.m.! LOL Last night and today has been rougher on him. He's still having significant pain in that arm, some fevers and now we are beginning to see some of the side effects of this antibiotic. It always seems to get a bit worse before it gets better. No worries though! We're in it for the long haul! :0) For now we continue to pray, enjoy his smiles and for heavens sake don't forget. "HANG THAT BUG JUICE!" LOL Thank you all for your continued prayers.
The nurse had the discharge papers ready in no time at all but then we did run into a little snag. Jophies Aide that was with me became deathly ill and was unable to travel home with us. We had to call her husband to come pick her up. It's about a 40 minute drive from West Virginia back into Ohio for me so needless to say it was a scary ride home. We lie him on his side on the back bench seat then use the shoulder belt around his torse/chest and use the middle belt around his hips/thighs/legs. He actually is very secure but its impossible for me to get him in or out alone. One of the nurses from the peds floor helped us down to the van and also helped me get him loaded.
As we headed home alone I became even more nervous. He still was a bit sedated and I was worried about his airway, about him getting sick and or needing suctioned, about him getting too hot and let me tell you it was hot as blazes! I do have air in the van but not dual so not much reaches him not to mention I can't see him because of the way I have to situate the wheelchair. The trip ended up being uneventful except now I had to figure out how in the world I was going to get him out of the van and into the house alone.
My cell phones battery has been on the fizzle for some time and after about 3 unsuccessful calls at the hospital the battery was showing basically dead. On the way home I kept thinking if I could just get ONE call out of it I might be able to round up someone to meet me at the house so I flipped that thing open and would you believe I had a full charge! Yep.....It's a God thing. :0) I was able to call my neighbor and also made a second call to my friend who also is Jophies nurse. They both meet me in the driveway when we got home. Between all 3 of us we were able to transfer him safely and more importantly gently as he was in considerable pain.
The first night Jophies nurse and I had a terrible time getting ahead of his pain. We just kept pushing tylenol every 4 hours trying to get him comfy. He is unable to lie on the PICC line side without severe pain and agitation which had me worried. He has had 3 previous lines placed and although they were a bit sore it has never been anything like this. Because it is in an artery they apply a 24 hour pressure dressing so by last night that needed to be removed. I was horrified to find this. No wonder the little guy couldn't lie on that side.
Sherrie(his pediatrician) had actually phoned yesterday to check on him and wanted to know what the PICC line sight looked like but, at the time I still hadn't removed it. This morning I sent an email to her with a picture attached so she could take a peek. I'm just waiting on her return call with an opinion as to whether it looks normal or not. Jophie has never bruised like that with any of his other line placements. As a matter of fact I don't recall him EVER having a bruise that bad. The only thing that concerns me would be low platelets, the hematoma and swelling near the top or possibly something I'm unaware of. So we wait and see. 
Monday, July 30, 2007 5:00 A.M. EST
I've just spent the last two hours getting things ready for tomorrow. Jophie has so many things that have to travel with him just for survival that even to say the preparation is a "huge ordeal" would be an understatement.
I woke up sick to my stomach this morning and stayed that way till late afternoon. I just can't shake this feeling. At the moment the sick feeling is gone but now is replaced by anxiety. I keep reminding myself that God is in complete control of this situation but even still....
I keep repeating this over and over. I know its true I just need to claim it!
Matthew 6:34
Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.
Oh how I wish this were Monday night with all this behind us!
I'm taking my laptop and if I'm able I will update after the procedure then hopefully again once we get up on the peds floor and settled in a room.
Specific prayer requests again:
1. The radiologist will be able to place the line with no complications and very few attempts.
2. Jophie will have no breathing or airway problems during the procedure.
3. Jophie will begin breathing on his own without complications once the sedation drugs are stopped.
4. Jophie will not have any seizures during or after the procedure.
5. Jophie will not get dehydrated. (We have to hold 2 meals which is a huge deal when your only tube fed).
6. Jophie's zofran will keep him from being nauseous/gagging/wretching(He can't throw up so this is a big deal).
7. Jophie will not feel any pain during the procedure and minimal after. (There will be a couple stitches plus it is invasive).
8. Jophie will not be allergic to this antibiotic.
9. The antibiotic will knock this down to an inactive state.
10. Jophie does not contract any new infections from this procedure.
11. Safe travel there and back. This is a big deal because Jophie no longer can ride locked down in his wheelchair because it doesn't fit in the van right and no normal person can afford one of those crazy handicapped accessable vans?)It's nuts!
Ok I need to scoot and make sure I have everything packed and in order because I only have 5 more hours.
Saturday, July 28, 2007 5:18 A.M. EST
I always "have a plan"
I like plans. I like schedules. In fact I NEED them. It gives me some perception of control even though I actually have very little control in this very chaotic and upredictable world of Jophie. It consumes me.....in a good way.
I love being surrounded by everything him. His smell. His smiles. His blankies. His snuggles and yes I even love his Mic-key button, nasal canula and every piece of medical anything thats attached to or poking out of him because it IS a part of him. It's what makes him "JOPHIE" and to have those things attached is to have him "here"..... Alive and well
Sherrie (Jophies pediatrician and our dear friend) called on Thursday.
The results are in. His cultures did in fact grow Pseudomonas. No secret there. Thats one of many he is colonized with however that bad boy is evil and rears its ugly head often. It was active about a year ago and sensitive to Cipro which he has been on for 30 days now. This time its resistent to the Cipro and sensitive to 4 different antibiotics. The very same antibiotics it was sensitive to three years ago which tells me two things.
One: It must be the same strain of Pseudomonas that he contracted three years ago which by the way was his FIRST ever encounter with this evil bug. It's a dangerous and very resistant "super bug" and during the few years that I worked in the medical field it was always known to us as a "death sentence"
I became deathly ill when they told me because "I knew"
Two: Since it was sensitive to Cipro a year ago but not three years ago he either is colonized with "2 diff. strains of pseudomonas" OR it has mutated and is "now" resistant to the Cipro.
And its times like these that I wish I knew less. Ah yes Ignorance is sooo bliss!
After Sherrie and I spoke for a bit discussing and comparing notes she decided that the best course of action would be to have a PICC line placed and run the antibiotic that was the most sensitive.
There are four that are testing sensitive at this time.
1. Gentamicin (He can take this one but he did have some sensitivies to it three years ago)
2. Tobramycin (He had an allergic reaction to this one three years ago)
3. Azactam (This one saved his life but at the same time almost killed him)
4. Amikacin (He has never taken this one BUT it is testing as the most sensitive)
I KNEW that three years ago we had nearly exhausted every antibiotic just trying to knock that bug down to an inactive state so imagine my fear when I hear that three of the four antibiotics were ones we had already tried AND ones he had problems with.
Right now I am more thankful than any mommy could be because of the four there is ONLY ONE on that list that we have not tried AND it is the one that is the MOST sensitive meaning it would be the best one to use.
YES.....It's a God-thing :0)
"THE PLAN" was to go up early this morning and have the PICC placed outpatient however I found a few kinks in "their plan" and you know this must be "My Plan" lest I lose my sense of control. :0)
The "New Plan" will be to arrive at the hospital very early Monday morning(7:30 a.m.) which means we have to leave no later than 6:00 a.m. which also means I will not be able to sleep because I don't finish up with his stuff till around 5:00 a.m. which is when I usually hit the sack however, I'll need to hit the shower at that time. Phew! Tired yet?? But hey.....I'm "in control" :0)
After we arrive we are to go to radiology to have the PICC put in. For the record he has ALWAYS had his PICC and Central lines placed by one of the PICU docs with sedation either on the peds floor or in the PICU. Needless to say I'm a bit anxious. Jophie is a VERY hard stick on a good day and an even harder child to thread a PICC or Central line through to the heart not to mention how dangerous it is to use sedation on him. He always does NOT breath on his own when they begin taking away the sedation meds. It's a really scary thing to watch your child not breathing. I've witnessed it more than I care to.
Next obstacle will be the antibiotic. Once the line is placed aside from any complications we are to go on up to the ped floor and they are going to admit him onto the floor so they can run the first dose to make sure he isn't allergic to it and YES, I'm scared about that for more than one obvious reason.
Once we get all this behind us we're coming home and I'll maintain and run his antibiotics from here. I've ran PICC and Central lines at home for him for up to 6 months at a time so this is the easy part. We just need to get to this point.
Specific prayer requests would be:
1. The radiologist will be able to place the line with no complications and very few attempts.
2. Jophie will have no breathing or airway problems during the procedure.
3. Jophie will begin breathing on his own without complications once the sedation drugs are stopped.
4. Jophie will not have any seizures during or after the procedure.
5. Jophie will not get dehydrated. (We have to hold 2 meals which is a huge deal when your only tube fed).
6. Jophie's zofran will keep him from being nauseous/gagging/wretching(He can't throw up so this is a big deal).
7. Jophie will not feel any pain during the procedure and minimal after. (There will be a couple stitches plus it is invasive).
8. Jophie will not be allergic to this antibiotic.
9. The antibiotic will knock this down to an inactive state.
10. Jophie does not contract any new infections from this procedure.
11. Safe travel there and back. This is a big deal because Jophie no longer can ride locked down in his wheelchair because it doesn't fit in the van right and no normal person can afford one of those crazy handicapped accessable vans?)It's nuts!
Ok off to finish up Jophies food and meds and hopefully hit the sack soon! The nurse called off sick tomorrow errrr today so we're wingin it alone! :0)
Thank you all for your kind words and your continued prayers for Jophie.
We do appreciate and covet them.
Tuesday, July 24, 2007 6:00 PM EST
You ever feel like your in a holding pattern?
Round and round we go waiting patiently(or not so patiently) for that green light announcing a clear path for a safe landing. I find myself constantly holding my breath in anticipation for "the crash".
I honestly don't know how to shake this feeling. That holding pattern exists all around me and in every aspect of our lives.
Jophie remains there and we wait as round and round he goes. The test results so far show clear lungs(not sure how thats possible) especially when they continue to collapse(atelectasis) in spots daily. Blood cultures as of last week were not growing anything which is wonderful but I haven't called back this week(I need to but not knowing sometimes is better).....The sputum is another story. It began growing "something" very quickly. After about 3 days they had narrowed it down to a gram - bug. (Pseudomonas is a gram - bug and also the one we suspected to be active) Last time it became active it was sensitive to Cipro which is what he has been on for nearly a month now. He has improved on the Cipro BUT, he is not well yet. He continues to keep a low grade temp and spike to 101 about every 2nd and 3rd day. Jophies normal "well temp" runs about 96.7 to 97.5. Yes I know that is very low but thats his norm. Alot of kids with brain damage have a horrible time regulating their temps and he's no exception.
One thing I am certain of at this point is.......I KNOW without a shadow of a doubt when we stop the Cipro that nasty bug will flourish and we will be back at square one. I don't know any other way to explain it other than I "just know". With Jophies inability to speak it becomes quite a challenge to determine whats wrong. It's a daunting task at best but for the most part I'm able to distinguish between pain and joy and in most instances I can pinpoint "where" or "what" part of his body the problem is stemming from. I'm so thankful God has given me this ability to "read him" like I do.
Yesterday one of Jophies medical suppliers delivered a portion of his montly supplies. I was outside swimming and didn't realize a delivery had been made. When I came inside the nurse working informed me he had left her to deliver "the news" to me.......Ah yes this always makes me nervous ....
This one did in fact involve "another crash".
No worries though because when it comes to medical supplies and Jophies insurance we are always "crashing" and I think I'm actually growing quite accustomed to plummeting to the earth at record speeds!
Seems this crash involves yet another "cut back" ......Jophie is dependent on suctioning to survive. I'm not talking just oral suctioning but rather "deep suctioning" where I have to use sterile technique(Gloves, sterile equipment and sterile lubrication)......The process involves going down through his nose passing through his throat and into the top of his lungs where I hit a cough reflex enabling him to clear his airway and lungs of deadly plugs and secretions that he can NOT remove himself. Without this he WILL DIE.
To date we have already been cut back to 3 pulse oximeter probes per month and to boot they give us ONE TIME USE ONLY paper ones that last(if your careful and lucky) about 2 to 4 weeks. These probes are attached to a pulse oximeter which monitors his oxygen saturation and heart rate. Without this he would DIE. DAILY those alarms sound alerting you of a dangerously low oxygen sat or heart rate. Imagine what would happen if he wasn't hooked up while I slept (which is very little). I would most likely find him dead from a plug he couldn't clear. So you can see how important these are not to mention how 3 would NOT even last a year.
Um lets see what else has he been cut back?? Surgilube, Gloves, Yonkers, Nasal Canulas(for his oxygen), Feeding tube bolus sets not to mention the next rumor.....Oxygen tanks, his oxygen concentrator and ALL the supplies related are no longer going to be the insurances responsibility but rather the consumer and if you can't pay they will remove it from your home.(It doesn't matter if you have a doctors script stating he will DIE without it) They are heartless and care only about the dollar and that ONLY scratches the surface of Jophies supplies and medical equipment list.
You know whats sad?? It's not just us. It's ALL OVER. I know sooooo many kiddos who are going without or are very limited because of the very same reasons. I do have a few things that I have "extra" which I am forever trying to find other little kids who may be limited in these items so I can pass them on. Isn't it a shame we have to do this??
OK so onto The NEWEST cutback.....You ready for this??
The state has now determined that Jophie no longer needs 300 suction catheters per month but rather UM ready?? 90
Holy Cow! Can they really be that heartless??? So that means he can only be suctioned 3 times per day based on those numbers?? Are they kidding me?? There are times(especially when he is ill) that I suction him in excess of a dozen times per day. These can NOT be reused and YES we are already sterlizing and reusing (one time only use) items that we really should not be which in turn puts him at even greater risk of MORE infections.
But, I have no other choice.
I do hate when I get this way. I try so hard to not get angry but it just makes me so mad that not only do they continue to deny and reduce quantities but they do this KNOWING most of the items/equipment are needed to PREVENT DEATH. THAT is what bothers me the most. They don't care about these children who have already faced monsters beyond their imaginations and then to have to "fight" for necessary items seems so cold.
What I like to do when I get this way is to remind myself to be thankful. Thankful for everything we do have. Thankful that he does in fact get montly supplies even if they are very limited. At least we DO get some. Thankful that when the day is done I KNOW I'm not alone.
We are to give thanks in ALL things and that is what has kept my focus on God. He is the only one who will sustain us through the difficult times and we have to rely upon His Grace.
"My grace is sufficient to thee: for my strength is made perfect in weakness.
2 Corinthians 12:9"
So when I'm all bleary-eyed and I think I just can't face "one more crash" .......
I look upward and remember.....
Truly....
His Grace IS Sufficient!
Thursday, July 12, 2007 3:45 AM EST
100 days and counting...........
I'm scared. I'm teetering very close to the edge of a scary place I've been before. A "super bug battle" like none you've ever seen before. Last time it nearly won.
Only 10 more days of the latest antibiotic and still I continue to see signs of that ugly head rearing of "whatever bug is attacking" this time. I'm certain its one of his colonized ones if not more than one. They are the evil ones that have been residing in his little body for nearly 4 years now. Hidden in the shadows just waiting for his immune system to drop just a little and then they attack.
Attacking with a force and vengence sending his already compromised immune system into a deadly tailspin.
Fierce they are. All of them. One is no better than the other.
He's fighting hard. He IS a great warrior and the best part....... He has the fiercest warrior of all in his corner. Our heavenly father carried him through the last battle and I'm certain he's right here with him again.
BUT, I'm still scared......
I don't like exhausting all the "big gun" antibiotics. I like having a little "guard rail" to hug up against. Something safe to snug up against when your pushed to the edge of that "super bug cliff"
I CAN think of a few more "big gun bug killers"......I can even think of a few good combinations of "bug killers" that we haven't tried yet with those come a whole nother set of problems.
Please don't misconstrue this as giving up or being unfaithful. In fact my faith remains quite strong. I KNOW exactly who is in control but like I've said before.....
I'm scared and I'd be lying if I said otherwise.......
I have some specific prayer requests but....I think it best to toss out a bit of information to better help people understand EXACTLY whats occuring.
Jophie is colonized with 3 super bugs that we're aware of and has tested positive for 2 others on numerous occasions.
Positive Colonizations:
1. Proteus Mirabilis
2. Pseudomonas
3. Stenotrophomonis Maltophilia
Possible Colonizations:
1. Klebsiella
2. Providentia
I don't know bout you but ALL those make me "shiver"
Colonization: This means those nasty bugs have basically taken up residence in his body and are living there.
Think of it this way......
You have a good army and a bad army. Jophies good army is not as strong as it should be because of his immune system. The "Nasty Super bugs" are the bad army. Jophie is fighting with ONLY ONE good yet compromised army. The "bad guys army" is 5 fold. That would be 5 bad armys against ONE compromised good army.
What happens is this:
When Jophies immune system drops down a bit more, he is exposed to a cold or illness of any sort, he has an "off" day and doesn't get the nutrition in he needs, he doesn't get the fluids in he needs OR any number of about a bazillion other things
THEN......
The "bad armys" attack.....As Jophies "good colonies" drop in numbers the "bad armys" already large numbered colonies can take over and become "active" and often more than one of the "bad armys" is active at one time. The goal is to get Jophies army back up in numbers so as to "overpower" the "bad army" and knock their numbers back down to an inactive state.
Don't get lost here......We can NOT erradicate these bugs but rather our goal is to knock them down to an inactive state in which case that would mean his "good army" is big enough in numbers to keep those "bad ones" at bay.
Make sense??
OK so I'm asking for your help here. While I've been on bended knee storming those gates for nearly 100 days now......I think the time has come to multiply "our numbers" and all together we can Storm those gates! In numbers we are sure to succeed!
Specific prayer requests would be at this time:
1. The antibiotic that he is currently on would knock whichever bug or bugs is thriving down enough to make it inactive.
2. Jophies immune system would kick in enough to bring his numbers up to keep those bugs at bay.
3. IF this one does not work then we need to figure out which bug or bugs is active AND come up with the right drug or combination of drugs to knock them down!
4. Give his doctor the knowledge and wisdom to fight this effectively again.....
NOTE: His doctors name is Sherrie. She is a christian and leans heavily on Gods guidance not only in her private life but also in her work......
I think it helps to attach names to our prayers when we can :0)
Trina(Who's still looking upward) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Thursday, June 28, 2007 2:30 a.m. EST
Still here. Jophie is still sick. He's had 20 days of biaxin with about a 2 week reprieve and is now finishing up another 20 days of biaxin. The first 3 days of this round he continued to run a temp then it went away and he started acting much better. Once we started on the second 10 days he began running a temp again and the lower right lobe went down. The shape of his back has gotten so much worse that its not uncommon for him to have atelectasis in that area daily then add that to him not being able to sit up much any more and you have a deadly cocktail for collapsed lobes in his lungs. The problem becomes when its "stuck" together with no air moving in that lobe, things begin to grow OR worse the bugs he is colonized with take up residence in that particular spot and just flourish. We do flip him every 2 hours when he's lying down and are constantly doing CPT(Chest percussion therapy) along with breathing treatments around the clock. This does help but its a struggle to keep up with how often that lobe of his lung gets "stuck" together. The plan at the moment is we will take him back to see Sherrie tomorrow to see what the next step should be. I know when he takes that last dose tomorrow that bug will slowly rebuild its strength till its full blown again. We NEED to knock it down completely making it inactive. I'm going to ask for blood work to check for Myco, cultures to make sure its not a diff. bug were missing and, while we're at it we might as well check his Klonopin and Tegretol levels along with his LFT's(Liver function test)...Hmmm what else? Ah CBC to just cover all bases and a chest Xray. I'm hoping we can pin down exactly which bug is rearing its ugly head then tackle it with more than one big gun if need be. We shall see. In the mean time please continue to pray that we can first off figure out which one we're dealing with and second that we can come up with the right drug or combination of drugs to knock it back to an inactive state. Sorry to cut so short but I'm really tired and need to finish up his tube feed and meds so I can hit the sack. Trina and Jophie(Who are resting in the loving/healing arms of our heavenly father)
Wednesday, May 30, 2007 9:45 PM EST
Jophie has been off his antibiotic for a week now and so far so good. I'm keeping a close eye on him as I see a very subtle trend beginning again. I'm praying his little bodies immune system will kick in enough to ward off these pesky bugs he's colonized with. In the meantime I watch him and pray. Memorial Day was nice. We weren't able to go see the parade which I really do miss. Our town has the longest running Memorial Day parade in the nation. I was in the band all through my school years so I sure marched my share of those parades. We tried to take Jophie last year but for one thing, its next to impossible to find parking and when you do you have to walk to a spot and sit "in the sun". Next, before we even found a spot he was gagging/wretching from the heat and that was in the van with air! UGH...This year we decided it best to not even attempt it. Ohio University has a local branch and their media students film it however, its on a cable channel and televised locally on cable but not our local channels on Satellite. Bummer! One would think with this being the oldest parade in the nation that at the very least ONE local channel would cover it. I guess we need to rattle their cages about that one eh? It's been SOOO very hot here with NO RAIN at all for a few weeks. I'm just dying to get my pool open but as it stands it remains a frog pond and YES with REAL frogs and baby polywogs growing as we speak! Thousands of them! ROFL! The problem is the pump cracked last year so I need a new pump AND, it needs drained because a nasty bat died in in at the end of the season last year. I can't stand the thoughts of Jophie getting in that "bat juice" pool! ICKY! OH and I mustn't forget we are going to swap out liners as well. Phew! We have a big job ahead of us but I'm confident we can do it with the help of all Jophies nurses. Hopefully, he'll be splashin round in it in no time! No word back from Make a Wish yet. I think its been 2 weeks since she was here?? Maybe its only been one??? Regardless, we asked for a hot tub for Jophie. It was spose to be put before the review board and then once the decision is made they will give us a call one way or the other. I'm so praying they approve his wish. The hot tub would be so nice for his stiff, aching creaking body. His back has gotten so bad in the last couple years that he can barely even sit in his wheelchair. Speakin of wheelchairs. My friend from England. (Hi Tia! **waving**) has tossed a few ideas my way on wheelchairs and I believe the Matrix is a VERY good possibility! It really looks like it could accomodate Jophie even with his 90 degree kyphosis curve AND comfortably I might add. I have a script for the PT eval and for a new chair. I just need to get the ball rolling and make some appointments. Ok I need to scoot! I have a rumbly in my tummy and I have NO CLUE what I'm even going to cook for supper. Please continue to keep Jophie in your prayers. Lets pray all those buggies/germies away and pray his wish gets approved AND, that we can get the pool up and running for him! Thank your for your continued prayers and support. We appreciate them so much! (Hi Di! **Waving**) :0) Trina (Who's walking in his SONshine and loving it! **BUT, we sure could use some rain Lord :0)**) and Jophie (Who remains wrapped in the loving/healing arms of our heavenly father)
Thursday, May 17, 2007 3:10 A.M. Eastern Time
Jophie is now on a second round of Biaxin. Sherrie(His ped) thinks this is Mycoplasma again. We only have about 4 days left of this second round of antibiotics and I can honestly say he's not where I would like him to be. I have seen some improvement today as opposed to the last week. Don't get me wrong he is much improved since he's been on the Biaxin however, although he is getting better he is "not well" yet. This Myco was a bear to knock down the last time he had it. He was on Doxy, flagyl and something else for 6 weeks. I do remember he also had C-diff during that time most likely due to all those antibiotics. IF by the time we are finished with this round and I don't see marked improvement, I think the next step should be blood work to determine exactly what were dealing with. I do plan to give him a few days after he finishes this course to see what his body will do on its own but, I'm not waiting too many days or it will just flourish again if its not completely gone. All I can do is pray this works. I guess we'll see soon enough!
I finished up another one of my classes Monday evening. That should only leave about 3 to 4 more classes. I've begun getting all the paperwork we have to do on our end. My doctor filled out a form for me and I think my next move will be my TB test and have my FBI and BCI fingerprint checks done. Theres still quite a few things to do but thats a good starting point!
OK! I need to scoot! Thank you all for your continued prayers and support. We appreciate them so much. Remember all our little friends and all those families whose arms are empty tonight. Don't forget to hug your little ones and tell them you love them! :0)
Trina(Who's walking in his SONshine) and Jophie(Who remains wrapped in the loving healing arms of our heavenly father.
Friday, April 21, 2007 4:15 AM EST
Alot of things going on round here. Jophies doing fairly well. He just finished up 10 days of clindamycin. It sure messed up his stomach this time. He's still not completely back to himself. Between the gagging and wretching, increased heart rate and agitation, he's keeping me on my toes rotating between zofran and tylenol to keep him comfy and not gagging. We need to get him straightened up so he can go outside and use his swing. It's supposed to be soooo nice again tomorrow...Well rather later today! I sure hope he can enjoy a bit of it! :0) We managed to accomplish quite a bit today. My van window got busted somehow so today we taped it up and covered both sides with plastic in case it decides to pop the rest of the way out. I called the insurance and its covered but with a deductable sooooo, I'm gonna call around to see what the actual price to fix it will be. Who knows it may be cheaper to have it fixed right out than to pay the insurance company. Jophies swing needed a little adjustmant. This winter the ground was so soft that the legs sunk into the ground which caused the wheelchair platform to be touching the ground. We raised all 4 points up by 2 links and its swinging just fine now! Now all we need is one happy and feeling well little boy to plunk onto it and swing! LOL This past week there have been so many kind things done for us. People are always doing nice things for both Jophie and I. I guess it just never ceases to amaze me the kindness and generosity of so many. Tammy who is a dear friend and who also happens to be one of Jophies nurses has brought me supper 3 days this week. Well actually now that I think of it she has brought me supper nearly every single week at least one day and most times more than that! Thanks so much Tammy! Words can't express how thankful I am. Yesterday a friend from church came and cut my grass which was about knee high! Jophie is allergic to almost everything outside and for him to be able to even go outside the grass needs to be kept short. He knocked it all down and even came back today and finshed up some trimming, dug out a ditch next to my house that is not flowing well and keep flooding my side yard when it rains, AND he fixed my lawnmower! Thank you so much Dave! It was so nice of you to sacrifice your time to help us. AH big news! Make a Wish sent me a letter about a week ago and Jophie has been granted a wish! We are so excited but very undecided as to what we will be asking for him. We do know what we are NOT asking for so that helps some. We will NOT be asking for any type of trip because Jophies health just will not allow it. We want something that he can continue to enjoy over and over. Speaking of...I really need to call them and make the arrangements for a visit. More big news on the homefront! For those of you who know me, you will remember I was a foster/adoptive parent for 12 years. When Jophie became ill around 3 years ago, I put things on hold and now after 3 years I'm starting the process to have my license for foster and adoption renewed! I'm so excited as I have missed doing this terribly but, the timing has just not been right. After much prayer not to mention all the things that are just falling into place, I think the time is now! I begin this Monday night and will continue for each Monday through June 11th. By June 11th I will officially be a foster/adoptive parent again. I can't wait! We had Jophies birthday party this past Saturday. Jophie didn't feel too well that day but we did manage to get him up in his wheelchair for about 20 minutes and get some pics. He also sampled some icing which he loved! The pictures aren't that great but I was taking them really fast because I could see he still wasn't feeling well and wouldn't be able to sit up long. Here are some of the best ones. Being silly! Myself I'm managing to get to the Y anywhere from 1-3 days per week depending on how Jophie feels. It really does make me feel so much better if I'm able to go. The fight continues with Jophies insurance for things he needs along with those horrid denial letters they just love sending me. I've also been in a battle with my insurance to cover a medicine for me and after nearly a month of fighting they finally agreed to pay for one that is similar. IF I for some reason can't take this one then they will pay for what the doctor really wants me to take! Holy Cow! Do you ever feel like we're part of some big experiment? Well lets see...If she doesn't die taking this "alternative who knows what it really is drug" then we won't have to pay for the "recognizable very well known name drug that my doctor really wants me taking"....Ugh I just can't stand what the health care system has turned in to. A little side note. Jophies annual fundraiser date has been moved to October. Fall seems like a better time for all who are involved. We're praying for and looking forward to another successful and enjoyable time! Ok I really need to scoot. Thank you everyone that sent Jophie his cute little virtual b-day cards. He loved listening to the music so much! Please continue to pray for Jophie that he remains well and pray those germies/buggies away. Remember all our little friends who are ill, suffering, dying and all those families whose arms are empty. Thank you for your continued prayers and support. We appreciate and love you all so much! Trina(Who's walking in his SONshine) and Jophie(Who remains wrapped in the loving healing arms of our heavenly father)
Monday, April 8, 5:30 AM EST
Happy Birthday my sweet Jophie! I can't believe you're 14. It seems like only yesterday your were just a teeny little baby in my arms. I love you so much my sweet baby boy! We're not having Jophies party till next Saturday so no birthday party pics until then! I did post a new one up top though :o) Trina(Who is looking upward) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
February 9, 2007 4:30 p.m. Eastern
Jophie is still doing well aside from his little mouth. I did break down and use my last Suction Sponge and really gave that mouth a good cleaning. He enjoyed it so much that I ordered a case of them using some of his money from his medical fund. I can't wait to get them so we can tackle that little mouth every day.
Ah I have some exciting news to share. One of Jophies nurses submitted him to Make a Wish. They've contacted her a couple times via email and phone and said now all they have to do is contact Sherrie(Jophies Ped). I got a release form in the mail from them today to sign and return giving Make A Wish permission to actually contact Sherrie. So far so good! Jophie definitely meets all their criteria/guidelines. I just hope they see it that way. Wish us Luck!
Please continue to keep Jophie in your prayers praying all those nasty germie/buggies away. I also have another special prayer request. One of Jophies aides that no longer works for me had a terrible scare regarding her little girl. I don't know all the details and the specifics I do know I'm not sure of just yet. I do know she is on the vent in the PICU at Cabell so its indeed serious. I'll know more tomorrow because her sister still works for me and works tomorrow. In the mean time say a little prayer for this little one and her family.
While reading the guestbook entries I happened on to a new face visiting us...Hi Di from Australia! ~~waving~~ It's nice of you to stop by and we're always happy to see new visitors! Come back anytime. :0)
OK gotta scoot! Thank you all for your continued support, encouraging words and prayers. We appreciate them so much!
Trina and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Wednesday, January 4, 2007 12:45 EST
Jophie and I had a nice Christmas free of all those nasty germies and bugs. I managed to get my tree down yesterday but it still needs put away in the building. For now its bagged on the deck. I noticed tonight that I still had my Christmas lights on the deck and my Christmas flag hanging. I suppose it would be a good idea to take those down as well. LOL Up until about 5 days ago Jophie had been feeling pretty good only fighting his normal daily things. I noticed his heart rate was really high and honestly that pretty much was my only clue. He seemed a bit "off" but he does that sometimes and its nothing so all you can do is just watch him and wait for more. Today when he woke up he looked pale and seemed worse than the last few days so I took him to see his ped. We're not sure exactly what he has only that its an infection somewhere above the neck which is good! I'm just thankful its not the lungs. She put him on Clindamycin for 10 days and if he's not much improved by Monday she wants to see him again. Needless to say this momma is pooped after our trip to WV today. It's very tiring packing everything he needs then loading and unloading several times especially with our van situation. When I got home I took some motrin and fell asleep on the couch. I'm hoping for another little nap before I have to start his 3:00 a.m. meds. We shall see if it happens! :0) Well I really need to scoot and finish up what he's eating right now if I hope to get any kind of snooze later. Thank you for your prayers and your support. Please continue to pray those germies and bugs away and especially this latest one. I pray you all have a happy/health New Year! Trina(Who's pooped tonight!) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father.)
Monday....December 14, 5:30 AM EST
Just a quick update with a couple things: I wanted to post here that myself along with some of my Childrens Boutique Clothing Designer friends has an auction up and running with 100 percent of the proceeds going to St. Judes Childrens Research Hospital. A year ago we decided before Barbie and Ken were to be married that she needed to travel around the U.S. and Canada to see the world. Each one of us took turns showing her "our town" and while visiting each of us her Trousseau began to grow! We're talkin HUGE baby! We kept an online journal in which each one of us journaled about her adventure after we sent her on her way. The journal entries are absolutely HILARIOUS and a MUST to read! The journal entries are categorized by state. I am in OHIO of course and my ID is jophies_jungle that way you'll know which one is mine when your reading! This would make an awesome gift for some little girl this Christmas PLUS you would be helping all the little ones at St. Judes to boot! You can find our charity auction by following the link Jophie is feeling better but I had to increase those darn steroids back up. He just doesn't do well with the weaning. I'm only dropping him by 5's. I guess I'm going to have to go even slower most likely by 2.5's. I also pumped him full of pedialyte in case those electrolytes were messed up again. Not sure which one helped if not both. Regardless, I'm happy to see him feeling better. OK gotta scoot once again. Trina Dec. 11, 4:00 a.m... Wow! Christmas is just around the corner! I'm really starting to see what my parents used to say, "The older you get the faster time goes!" Boy is it ever flying so I must be old as dirt! LOL I've reduced his steroid again as of yesterday bringing him back down to 30mg. I'll let him hang out there for a few weeks then try another drop. Our goal remember is to get back to 20mg. His endo doc wants him at 10mg but because of his lungs I don't think she's ever going to see that. 20mg is not horrible and if while its sustaining his adrenals, its helping his lungs too then we'll take it! :0) It seems Ohio has made another terrible move in that they are suposedly getting rid of medicaid! After many years of having no insurance I FINALLY get a medical card and wouldn't you know they take it away. They've replaced it with some other plan that I've never heard of and my doctor so far does not take it. My biggest fear is that they are also going to take Jophies. I've been sick about it but have been trying not to worry myself to death over it. I don't care about me as I've been without health coverage for years but Jophie...Now thats a whole nother story. Medicaid has been bad enough to get him what he needs and still they don't cover alot. I can only imagine what this rinky dink plan is going to be like. Please pray that Ohio grows a brain and goes back to what was working. Um if it aint broke don't fix it! I say leave well enough along Well my plans for the day seem to be growing and I haven't even made it to be yet! I need to ship a package out to a customer, try and slip in a good swim at the Y AND, pick up some ingredients to make some Christmas goodies! Goodies are what everyone is getting this year as they are more affordable to buy and I hope will be thought as more personal. Ah! We had something really scary happen just up from our neighborhood night before last. It seems a man with a shotgun and wearing a ski mask walked right into a house at 1:00 a.m. on a family! The mom was doing dishes and her daughter and boyfriend were downstairs. The dad was asleep. He told her he wanted money and he would not hesitate killing everyone in the household all the while holding the shotgun to her back. Makes me shiver thinking about it. The kids heard the commotion and ran upstairs but when they saw the man the tried running back downstairs to call for help but he saw them and brought them in the kitchen as well. The mom gave him 60 dollars that was in her purse and he told them he was NOT leaving with only 60 dollars. The daughter offered her DVD player and that seemed to make him happy cause he left with those items. How scary is that!!? Needless to say I'm still up and thinking I don't even want to turn out my lights! OK I need to scoot so I can finish Jophie up and try and get some Zzzzz's. Please continue to pray for all our little friends and for the families whose arms are empty this holiday seaseon. OH and if you get a chance you gotta go by and wish Jake Owens family a great big Congratulations! If you haven't heard already they just won 4.4 million dollars! HOLY COW! I can't think of a better family to win this and I know without a shaddow of a doubt they will use this to benefit so many families suffering and going through what they've been through. If given the chance I KNOW they would trade it all in for just one more day with their sweet baby. A great big Congrats from us Raborns! We love you guys! That would be Jakeowen in la. Thank you for your continued prayers and support. We appreciate you all so much and we'd like to wish everyone a VERY MERRY CHRISTmas! Trina(Who's very thankful this holiday season) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
BARBIE CHARITY AUCTION
Jophies been doing well aside from the last few days. His heart rates been up and he's seemed a bit agitated and a bit "off". I'm praying its nothing more than just a few off days and that he'll be back to his old self in a snap! At the moment he's in the bed all smiles. That kid always has a smile no matter what!
Saturday, September 30, 2006 2:40 a.m. EST
Jophies Fundraiser: Benefit Dinner and Gospel Sing Featuring Sincere will be October 1 from Noon-2:00 p.m. Please click link above for Information, Directions and contacts. It's been really crazy round here. Jophies not been feeling well for a bit over a week now. The little guy can NOT sit up. UGH..... I have no clue what is going on and so continues my quessing game. Every single time I sit him up he starts moaning and grunting like he's in pain. It honestly starts within minutes of sitting him up. It then esculates into gagging and retching. UGH UGH! Needless to say its driving me batty AND really has me worried because he now can not ride in his wheelchair in the van. His benefit is Sunday and I'm so hoping that first I can get him there and second that he enjoys himself. He LOVES gospel music and really enjoys hearing Peggy sing. I've been tossing a few things around in my head trying to sort his problem all out and so far no blinking neon signs just yet. It doesn't matter which chair he sits or nor does it matter if you sit him up in bed. Basically its the sitting postion. The only good thing about this is you can make him feel better by lying him down. He honestly gets all smiley and lets out almost a relief sounding sigh once you get him out of that sitting postion. I even changed his mic-key button just in case it had gotten whoppyjawed inside or something and that didn't even work. OH well at least he has a new one in now! :O) I'm still weaning his steroids from the last stress dosing. We are back down to 30mg. Pheww! Only 10mg to go! Now if I can just convince his little body to accept these changes. He's prolly having trouble coming back down cause whatever is going on is causing him UM STRESS! LOL The benefit is Sunday and as I'm typing I have 2 crockpots of beans cooking away! One is a double batch and the other a single. I only have 6 more batches to make along with the other goodies I'm making. I figured I'd better start early or I'll never finish by Sunday. I've finally managed to get Jophies Medical Fund established which let me just say was no easy task. We will be offering "Loving Jophie" wristbands and "Words of Faith" rings which you can read about by following the link I've included in the newest updates under the "how you can help" section just above the journal. I do have some awesome news to share! After MANY MANY years I am so thankful to say I now have insurance! I qualified for a medical card just and used it for the first time to buy my medications. I can not even express how thankful I am for this! It seems I've been eligible for quite some time but nobody knew exactly how to fill out the forms or where to look. See my income is diff than most as its adoption assistance. I guess there are diff. guidelines and diff. forms to fill out when you don't have a "normal" income or a "real" job. UM course I beg to differ on the "real job" thing. This is indeed MORE than a real job and I would challenge anybody to ONLY 24 HOURS and tell me otherwise. ~~winks~~ I haven't made it to the Y this week as I needed to wrap up all the loose ends for his Benefit Sunday. Hopefully, I can be back in full swing next week. My best friend Tammy who's aunt that was just diagnosed with cancer that I was telling you about last week. After 6 weeks of treatments she came into some complications and sadly passed away last Friday. Please keep the family in your prayers and they have had a run of really bad luck lately. Jophies swing should be finished up real soon. Tammys uncles just needed to get beyond the funeral. They are pretty excited to finish this up for him but I told them to please take all the time they need. OK gotta scoot! I need to flip Jophie to his other side and I have LOTS of soup to make between now and Sunday. Please continue to pray for Jophie that he stears clear of all the germies since we are fast approaching this nasty nasty germy flu and superbug season. Also, that we can figure out whats bothering the little guy and that theres a simple solution to fix him and last that Jophies benefit is a success so that we can buy the medical equipment he needs and that this will help sustain his medical needs throughout the winter months. Thank you for your continued prayers and support! Jophie and I appreciate it so much. One more BIG ONE! Litte Jake Owen is home on hospice. It's devastating news but we need to still pray without ceasing that Jake is healed. We have to remember that God is still in control even when things look so bleak. Thats jakeowen in la. I'm certain they could use as much luvin as we can give them SO, If you need better directions to his guestbook, you can just toss me an email and I'll get right back with ya! Trina(Who's walking in his SONshine but could also use a few extra prayers for some unspokens)and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father.)
Friday, August 25, 2006 6:00 AM CDT
Sorry for the delay. Things have been a bit crazy around here. Jophie is fine for the most part. He still seems a bit off to me so for now I keep watching him. Still no word on the date for Jophie benefit in October but will post that information as soon as it comes available. Still no swingset but hopefully as the weather cools they will be able to bring it to us and get it set up. The Boutique Angels are gearing up for another quarter charity launch! We will be launching on Monday August the 28th with 100f the proceeds going to the Leukemia and Lymphoma Society. I'll post the day of with a link directly to the auctions. Sorry to rush but I have several customs that I need to finish for customers plus I'd like to grab myself a little nap somewhere in there. Will be back to post a more lengthy update when time permits! Thank you for your continued prayers and support! Trina and Jophie :0)
Saturday, August 5, 2006 6:15 a.m.
Ugh.... I just read over my last entry and OH boy! I'm gonna have to really proofread when I do these early a.m. entries. I sure hope this one makes a bit more sense. LOL Jophie still seems ok although this momma is still keepin a close eye on the little guy. We finally got a little break from the heat yesterday! YAY! I don't think its gonna last long but still it was nice to be able to step outside and breath. Ya know I was thinking last night that I really need to make his appointment with his dentist and then it occurred to me. He has NOT been back to see his endocrinologist at Columbus Childrens Hospital! Yikes! He was spose to see her at least yearly. I guess I need to make that one as well. Ugh! I really hate making that trip for all kinds of reasons. This evening I was sent a link in my email and also recieved he same one on a group sight. You know the kind. We all get them. We open some and we skip some. Come on admit it! You know you DO skip over some of them even when they come from your very bestest friend right? Well, this particular one just said, "OPEN ME" AND, that exactly what I did! I can't even express how touched I was by this and throughout this evening I have watched it numerous times. Not only did I like it but so did Jophie. He is just so sweet and its times like these I could just squeezy him to pieces! hehe Jophie LOVES music but only certain kinds. As soon as this started playing I KNEW he was gonna like it! I can see him through this little window that seperates my kitchen and living room. I'm always peeking at him to see if he's ok. I looked in to see his reaction and immediately he turned towards the music and began grinning. As it played you could see him enjoying it more and more. He never turned away till it was over! Jophie listening to the music. Well I really need to scoot as its now 6:30 and I need a smidge of sleep! I couldn't go though without sharing this link with you all too! I hope it brings you as much joy as it did Jophie and I. :0) It may take a moment to upload for the dialuppers but its SOO worth it! I know cause I waited! :0) ENJOY! Thank you for your continued prayers and support! Continue to pray for Little Jake Owen and all our other little friends. Trina(Who's looking upward) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
THE DASH.....
Thursday, August 3, 2006 3:20 a.m.
Jophies doing better of course in the back of my mind that bloodwork still worries me a bit. Normally in the fall he goes for his flu shot, a checkup and bloodwork to check his seizure med levels and liver function. I think I might see if she can repeat that one test to see what those numbers look like that way either way I will know something. His mouth looks so much better. He does however really need to see his dentist. Jophie still has some baby teeth that didn't fully come in and his permanent teeth are now in right beside them not to mention they look yucky from his meds. He had oral surgery when he was around 4 and at that time had several pulled capped and filled in hopes it would protect those left till they fell out. Well it looks like they won't be coming out on their own. I did pull one a few months ago for him. The crazy thing was just danglin there so it was easy peasy! The others are not going to be as easy. His dentist is so sweet and works so well with special needs kiddos and sees many kids with disabilities. Hopefully he can pull the few baby ones he has left in the office rather than another oral surgery. If I counted correctly there are around 5 left which should take about 2 trips as they are scattered on both sides. He can only numb up one side because of Jophie lack of sensation and the brain damage. Still no word on a date for the fundraiser. We're hoping to hear back from the gospel group this week on the dates they are available in October. The weather has been hot as blazes which is still whats holding us up on his swing. As soon as we can get a break in the heat and humidity they are going to toss it together. I can't wait for him to be able to use it! The Boutique Angels is gearing up for another quarterly charity! The launch will begin August 28th with the proceeds going to The Leukemia and Lymphoma Society. I'll be sure and toss a link out here when we launch and as always if you are a designer and would like to be involved just toss me an email. OK I need to scoot as I still have a bazillion things to do aside from the normal Jophie things. Thank you all for your prayers and continued support. Trina(Who's trying to keep cool!) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father.)
Monday, July 17, 2006 2:12 AM CDT
Sunday, July 16, 2006 1:05 AM CDT
OK I'm back trying to update now for the umpteenth time. I just spent the last couple hours trying to settle Jophie down. He's so sick to his stomach and really has been off and on for the past 2 weeks along with a temp that keeps fluctuating up and down. I guess I may have to run him to his ped tomorrow so she can see whats up. Poor little guy is miserable.
Well I'm happy to say after 4 nightmarish days and over a thousand dollars worth of damage, that dog is GONE and all is well! :0)
I did phone my insurance company and they are going to cover the damages even the satellite receiver and cables less a 250 deductable. YAY!
Back again and NOW its after 11:00 p.m. I've lost track of how many times I've sat down here but here goes again! Wish me luck! :0)
Wellll that was short lived! Its now 2:49 a.m. and here I sit AGAIN. Sooo lets try this one more time.
Jophies been sick most of the day and at the moment is offering me a few smiles only because he's really enjoying his little drug fix especially that little goose upward on his steroids. I'm sure the zofran every 2 hours has given him a nice buzz as well. LOL
I just finished up a load of laundry only because I have nothing clean aside from the shirt I have on which proudly sports mustard, chocolate, chili, drool and snot! Ah lovely picture eh? It's spose to be high 90's again tomorrow loaded with juicy humidity and a heat index above the 100's. UGH perfect for traveling eh? I really dread the thoughts of having to take him to the doc in that nasty weather. Shame I can't get her to make a housecall. :0) Granted she has done that for me but he was really sick and unable to travel those few times.
I'm still trying to find someone to come and give me estimates on this trailer skirting. Honestly I'm not sure who to call. I was thinking a general contractor but what do I know. LOL
The guys who work on my air conditioner can give me an estimate on the conduit and my dad can do the estimate for the satellite and cable damage. Once all that is complete I guess I just have them Fix R'up!
I think the other wheel and axel is finally in. That medical supply called last week but by the time I returned the call the lady I needed to speak with had already left. She is supposed to be back in Monday so we shall see.
I do have some exciting news. Some of my close friends and family are setting up a benefit for Jophie. We are ironing out the details and I'll post all that info when it becomes available. From what I understand theres gonna be loads of food and (keeping our fingers crossed here) possibly some great music! I can't go into those details yet as they haven't been arranged fully yet. Regardless, it looks like its gonna be a fun time. If your local and would like to come, we'd love to have ya!
Another project Jophies nurses are working on is some baskets to raffle off. At the moment they are working on a Halloween and Back to School one. I'll post pictures and that info also when it becomes available.
Continue to keep little Jake Raborn in your prayers. He is still doing great! His last procedure to remove the turmors went very well! YAY!
Kristen, I'm sorry I haven't had the time to get any pictures to you. I'll do my best to get some of those posted this week!
OK I have to scoot! I made around a dozen bracelets today that I need to get listed in my store before Jophie needs me again. Thank you for your continued prayers. Pray that Jophie can shake this whatever he's got going on and most importantly that all those big, bad germies stay away!
Trina(Who's loving all this SONshine) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Monday, July 10, 2006 4:58 AM CDT
Hi all..
Sorry for the sporadic and delayed entries. It's just been so long since Jophie has had an enjoyable summer and I'm grabbing every single moment and holding tight!!
Gosh there's so much to tell. Lets start with Jophie. He's really been doing well. He's been sick for the last few days or so but thats just Jophie. He's gonna have his good days and bad days which is just part of being him. The best part is his good days are starting to shine brighter than those bad days and I'm lovin it.
Jophies swing his really coming along. A local school that is upgrading their playground equipment is donating one of their swing frames so that takes care of the frame! It's just amazing to me how all this has fallen into place. I'm so thankful for the men donating their time and materials for Jophie. I keep pinching myself to make sure its real.
The pipe frame is really heavy which will give him loads of growing room and now worries of it collapsing with his weight. I've not seen it but if I'm picturing it correctly there should be an empty side. If thats the case I'm gonna add a couple normal swings so my friends twins can swing with him. All the little kids in Jophies life love him so much and its not often we can find things they can do together.
Hmmm...what else? Ahh were still waiting on the other wheel and axel for his wheelchair. I'm gonna call this week to rattle a few cages. That should get the ball rolling.
Speaking of rattling cages! UGH...I can't even hardly talk about this without getting mad. Gosh even now just the thought has got me grinding and gritting my teeth. Ugh Ugh! OK let me just start by saying I DONT HATE animals. They're OK IN SOMEONE ELSES YARD. I don't mind looking at them IN SOMEONE ELSES YARD. Heck I don't even mind petting a dog IN SOMEONES ELSES YARD. I think you get the picture.
Lets back up about 2 weeks. I think you'll remember me whining about my air conditioner not working right AND how I bit the bullet and called the AC guys. Now granted these guys are the greatest and affordable BUT who in their right mind wants to really pay for that junk? Not me thats for sure! Well I did in fact call them AND my unit did in fact get a great big ole check up and let me just say Doctors really are getting the shaft compared to what these AC guys get for AC check up! LOL..
Diagnosis: One dirty unit which required a "special" acid that had to be mixed adding precious time to their tick tocking dollar clock. One clogged thingamajiggy inside which by the way was clogged 2 years ago and flooded my laundry room and kitchen. One unit low a couple pounds of freon AND one unit not blowing air to half my house. ???? Yep thats what the AC docs said. I will give em the badge of courage for braving the creepy crawling critters under my trailer cause you couldnt' pay this chick no amount of money to crawl in that dark creepy space! Upon inspection it seems some "animals" most likely cats and dogs had made themselves right at home. It also seems they felt this was some animal vacation spa for summer and winter. Those "animals" managed to RIP to shreads, Tear down and just plain destroy my conduit under the trailer which means for prolly 2 years I have been air conditioning AND heating their little "animal" spa! UGH UGH! Not to mention all that nasty moldy musty mess Jophie was breathing! UGH UGH again!
Well they finished up and quoted the damage to me. It did take a while to recover from all that pain I experienced from writing them a check BUT, I decided I was really glad to have my unit running so smooooth and Jophie breathing so much better! Did I also mention I was soooo excited about seeing how much this MIGHT affect my electric bill?
NOW...Fast forward to about 3 days ago. We made sure to replace all the skirting around the trailer good and tight so as to deter any 4 legged furry critters from entering which seemed to be working really well right along with my AC unit UNTIL 3 days ago. I was working with the pool and just happended to glance over and see one of the panels was open "just like a door". Hmmmm? Could animals really open that panel "just like a door"? Could they really be that smart? I get a flashlight and peek around a bit "from my yard" LOL
Well I didnt see anything so I replaced it still thinking this prolly can't be a good thing. I'm sure if you've followed us you also know I'm up mostly all night taking care of Jophie. During those wee hours of the morning you do tend to hear lots of noises. Around 3 a.m. I hear what sounds like something coming in the back door. I freaked a bit then realized it wasn't the door but rather "under" the trailer. You know where this is going right?
There is this LAB. A VERY BIG LAB. Not my Lab. Not the neighbors Lab. Apparently the word has spread about my "summer animal spa?" Over the past 3 days we have gotten her out and blocked it every way we could. NO she is not pregnant and NO she does not have puppies. She also can open doors and helped herself right into the neighbors house and flopped right on their living room floor and began watching tv. YEP! Thats what they found when they returned back from the barn. Did I also mention that when we block off her entries she panics and makes new ones?
SO far she has head butted, Clawed and DESTROYED at the very least 15 skirting panels not to mention the holes she has clawed in the others AND the skirting track she has chewed down to nubs. She also has RIPPED down that conduit I JUST PAID FOR 2 weeks ago. She lies right by it and YES enjoys MY AIR blowing UNDER MY TRAILER!!!
This evening my friend who also is Jophies nurse called her uncles who by the way are the ones that are building Jophies swing. They bring a HUGE chain and we coax her out. Its one of those that you corkscrew into the ground that way she can still move about but NOT get under the trailer. Her uncle "rigs" up the conduit with my lovely red duct tape so Jophie can breath. I also learn that when the trailer people set this up they DID NOT put any elbows on the conduit but rather "taped" it! YES your read that right. SO now I need elbows too.
You think its over? Think again! Here I sit at 5:44 a.m. and what do you think I'm doing? Well I'm fighting with that dog that is NOT MINE! Somehow and heaven only knows why BUT this is what she is doing. Earlier Im sitting here minding my own business and CRASH!!! My satellite reciever goes FLYING back off the tv and GLASS angels, GLASS EVERYTHING goes flying, crashing, breaking everywhere. THAT "STUPID"..Yes I've resorted to calling her stupid now when in fact shes really quite smart. Anyway, somehow she got hold of my satellite cable from "outside" and is YANKING it!! She has thrown my reciever off the tv 4 times now and everything on and around the entertainment stand is now broken. I've rigged up a chair, a chest of drawers, one side of the entertainment stand and a crutch. Don't ask. When I make too much noise she starts yanking and NOW my receiver is gonna need repaired if not replaced all together, the cable outside I'm certain is prolly chewed to bits or just hanging on by a thread AND MY NERVES are SHOT. Did I mention this IS NOT MY DOG?????? Did I also mention the dog pound rarely answers their phone and definitely not on the weekends?
SHE HAS GOT TO GO TODAY and I for one can NOT wait for daylight so I can go move her to the very middle of my yard so she can't reach anything! ANd to think I was being nice allowing her enough chain to get under my deck to sleep in case it rained. Pooey on her! UGH that just made me think she prolly has some whoppin pooo that will most likely be deposited all over my flowerbed and yard tomorrow.
OK I have to go before I get any madder. At the moment I have my headphones on with the music really loud to drown out all that "yanking" and I keep peeking to see if I still have a picture on my tv.
Please pray I can get this demon dog out of my life tomorrow AND that my insurance company will grow a heart and cover the damages.
P.S.
You might wanna pray I don't kill her too! LOL
Trina and Jophie who I think NOW HATE ANIMALS especially Labs who DO NOT BELONG to us!
P.S.S
I have some really cute pictures of Jophie over the last few weeks but I'll have to post another day.
Tuesday, June 27, 2006 1:18 AM CDT
Still here! Just heading to bed but wanted to stop by quick and say we are ok. Jophie got one wheel for his chair to replace the broken one and turned out the axel was broke as well so he replaced that too. We are waiting now for another back wheel cause Convaid sent the wrong one which turned out to be a nicer wheel and now we need another to match cause the wheel thats not broke now is a diff. size from the new one he brought. Is that bout clear as mud? LOL Still waitin on the swing but will post pics as soon as it goes up! I can't wait for him to enjoy it. Jophie has been doing well with just his normal sick tummy and pooey problems. He still hasn't made it in the pool because of the weather but we are hoping for a few sunny days soon! The water temp has fallen back down to 72 so hoping for that to rise as well. I did find him a used shorty diving suit to keep him warm as he can't maintain his body temp. plus I want to make sure his Mic-key button is covered. I'm not taking any chances of any bug or germie entering through there. Ok its 6 a.m. and I haven't slept yet. Jophie is still wide awake too so, I need to get to bed so he will sleep! I think sometimes he's so nosey and afraid he might miss something! LOL Jake Raborn is off the vent! Woo Hoo! Go Jake! Please continue to pray for the little guy and also remember Duckworths as they are still hurting and missing Jacob. Please remember Jophie and continue to pray his immune system can keep those germies away. Thank you so much for your support and your prayers. We appreciate them so much. Trina and Jophie
Saturday, June 17, 2006 3:50 AM CDT
Ahhhh! Sorry for the delay in updates. I was having trouble getting signed in here and with my music host. I think all is well now. I hope! Gosh so much going on these days if only I knew where to begin. Well I finally have the pool up and running. There were a few little problems with the filter housing and then the switch housing but we were able to fix it ourselves! YAY! Jophie still hasn't been able to get in because its freezing cold at 74 degrees. Brrrrrr! My dad has a solar cover he's going to bring to us so we can heat that thing up a bit. Jophie has been enjoying the outside and all this yummy sunshine we've been having. You should see the little tan he's getting. I LOVE seeing all that color in his cheeks and those pale little legs and arms turning to that pretty Biscuit brown! hehe We do have some exciting news. A friend who also happens to work for me was talking with her uncle. She was inquiring about a welding class instructor from our local Vo-Tec school. He was curious as to the inquiry and asked her what she was needing. It seems she was going to see if their high school class would like to take on a project. You will never guess what happened next! One thing led to another and when all was said and done her uncle said, "he wanted this project"! You have any ideas? Ok no more suspense! Her uncle along with some local volunteer firemen are making Jophie one of those handicapped swings! Ahhh! You know the one I've been taking him to at the park? Like that! I am so excited and can NOT wait for him to try it out! I got word yesterday morning that they are close to completing it. I'll be sure and post pics. OK gotta scoot its after 5:00 a.m. I will try and update a bit more. Along with having log in problems I also have my new worker who has really called off alot including this entire weekend. Ugh....I'm sure gonna be one tired puppy come Monday morning. Please continue to keep Jophie in your prayers praying for those germies to stay away and that he continues to be able to enjoy his summer and tolerate the outdoors. THAT folks in itself is a miracle! He is allergic to just about everything outside and normally can NOT breath. Granted we can't spend long periods out there BUT any amount of time is better than what he's had in the past. NOTHING. I'm thanking God for this wonderful, healthy time he is having. The Duckworths will be having a balloon release today to remember Jacob along with his service. Please continue to keep them in your prayers as they face the difficult days without their amazing Jacob. Also, little JakeOwen is still chugging along! Please pray he continues to do well, his second infusion cures him completely with no complications and that he will be ready to come off the vent soon! Go Jake! Thank you all for your continued prayers and support. I so appreciate you all. Trina and Jophie
Saturday, May 27, 2006 5:21 AM CDT
Hi all! :0) Just a quickie as I'm headed to bed. First I'd like for you to say a little prayer for 2 of our little friends. Both Little JakeOwen and Little Jacob Duckworth are on the vent. I'm certain and I'm equally certain Jophie is doing well and I'm still hopeful we will be able to go to the parade. I am however very skeptical about the "Frog Pond" Errrr I mean swimming pool being anything other than GREEEEEN and FROGGGGY by Memorial Day! LOL I went to swap out the motor/pump but it seems I also need to trade the electrical cord as well. Welllll....I tried really I did. For some reason I thought it was going to be simple. Yea right! I am of the opinion that the housing does indeed need to come off BUT I am very limited when it comes to tools! I do have screwdriver my dad bought me AND its a craftsman! ALL white with pretty pink flowers all over it! Hey don't make fun it works AND you can flip the ends to get 4 diff. screwdrivers so there! LOL I did think about getting my hammer....But then I thought again for I fear me and a hammer anywhere near that pump at this point could smell a "SMASHING" disaster! :0) I do have a plan though but I'll not bore you with that just yet. I'm off to bed to try and sleep which I doubt I'll be getting AND its not because I'm not sleepy! My FAN BROKE! ACK! I can NOT sleep without my fan! It just went Kapooooey! No warning or anything. Ugh.... I've added that to my long list of things to do ALL TODAY. I'm certain Johpies nurse today is going to just LOVE ME! NOT! haha OK off to try and rig up something that sounds similar to my fan. AT the moment my air is running, I have the tv on AND I've moved Jophies Oxygen Concentrator closer to my room in hopes all 3 things will drown out the noise or at the very least similate what I'm so used to. I doubt it but here goes! Thank you all for you prayers and continued support. Trina(Who can't wait to get a new FAN!) and Jophie(Who's resting but "NOT sleeping" in the arms of our loving/healing heavenly father)
Little JakeOwens family would appreciate a little prayer and some luvin
Jacob Duckworths family would appreciate the same!
Friday, May 19, 2006 1:39 PM CDT
I made it back! Again I don't have much time! My store needs stocked and I'm late listing for a launch so here is the short version. First the Boutique Angels did in fact launch on the 15th with all the proceeds going to The Ronald McDonald House this time. All the auctions look wonderful! Go check em out, you might just find something you like! Search Boutique Angels Charity on ebay to see them all. OK Jophie news. The little guys been sick to his stomach for a few days. I'm not sure whats up with that just yet but am leaning towards the poooey thing again. This new formula also causes alot of gas which he can't expel and in turn causes him to be nauseous and remember he can't throw up either. Thank God for Zofran! So, the last few days he's been living on Zofran and tylenol. I generally add tylenol just because I'm never sure if something hurts when he's uncomfortable and where he can't talk I like to cover all bases. Today he looks a bit better so I'm hoping the worst is behind us. The crooked wheel on his new chair has been ordered so we're anxious for that to arrive and for the repair to begin. It's gorgeous outside today and just the perfect temperature. I was walking around looking at some of my bushes and trees that are filling out and got to thinking about how long its been sinch I have actually been able to just take a walk outside. Years it seems! Boy did it feel nice! I can't wait to get some flowers and veggies planted AND get that frog pond cleaned up so we can swim! Yep the frogs have taken it over! I'm hoping to have it ready by Memorial Day. We shall see. Some good news. Some friends of mine ran onto a pool filter/motor brand new that was free. I was so excited! If you remember from last year the temperature outside was so hot it caused the filter connecting into the motor to expand which in turn stretched the lid. By evening it would cool and constrict making for a very ill fitting, non sealing filter. The worst part was you couldn't just buy the filter but rather had to purchase the entire motor and filter together as a unit AND was quite pricey! I was thrilled to get this new one! We do have our work cut out for us though. I plan to dump all the water so we can get in and replace some sand bags behind the steps that have burst and I want to disinfect the pool really good before refilling so theres no worries about Jophie contracting anything from the water. OK I really have to scoot as its now time for Jophie to have food and meds and I still need to finish up what I'm making for this launch that I'm late for! Will be back soon! Thank you all for your continued prayers and kind guest book entries. Please continue to pray for our St. Jude friends. Pray that Jophie starts feeling better so he can enjoy more of this beautiful weather and that he will feel well enough to to go the Memorial Day Parade this year! Trina(Who's enjoying this beautiful weather) and Jophie(Who's resting in the loving/healing arms of our heavenly father)
Monday, May 15, 2006 6:21 AM CDT
On my way to bed as I haven't slept yet. Will be upadating later today. The Boutique Angels are beginning another launch today. The proceeds this time will be going to the Ronald McDonald House. I'll have the full details after I get up. Hang in there! I'll be back with a full update! Thank you for your patience and continued prayers! Trina and Jophie
Wednesday, May 3, 2006 10:51 PM CDT
Right now at this moment 3 years ago I received a phone call from my dad. I knew it was bad. I could hear it in his voice. My brother had been killed in a car accident. I so wish I would have been wrong. It seems like yesterday. I can still see his smile and can almost feel him squeezing me tight. Sean always gave me the BEST bear hugs and back rubs ever! I miss you so much and can hardly wait to see you again. Remember the River is where we said we'd meet? SO until then....I love you buddy and I'll meet ya by the River! Sean and my niece and nephew Sean WAS buckled and traveling roughly 30 mph. You can't get much safer than that. I used to work on the squad and I can tell you from personal experience that it doesn't take a high speed crash for it to be bad. I've seen many accidents just like my brothers where parents and children did not walk away. Please always buckle yourself, your kids AND drive safely folks. Be aware of your surroundings and always keep an eye out for the other person. Now on to Jophie news! How bout we start with Easter? Well about 3 a.m. or so Jophie was in the best mood! You won't beleive what we tackled! We colored Easter Eggs! First let me start by saying this was the first time Jophie and I have ever done this AND you have to realize that first Jophie is allergic to DYE(UM eggs are colored with DYE)...He's also allergic to latex(Has to wear gloves to protect him from the dye) AND last he's allergic to glitter(UM out of all the boxes in my closet that are years old mind you...they all had to have glitter!) Thank God he wasn't allergic to the eggs and as my dear friend from England said, "The eggs are quite possibly the safest thing were using in this project!" See how dangerous egg coloring can be? ROFL! Preparing for this venture and you gotta remember he's never done this before hence the perplexed look! LOL And so the project begins! It really was kinda hard to take pics and help him at the same time but HEY you gotta do things on Jophie time and if that happens to be 3 or 4 a.m. then so beit! hehe I know one thing! Regardless if he knew what was going on, he DID know that he was having fun with me and thats all that matters! hehe Ok this is fun but whats that on TV? gettin a bit sidetracked now..LOL OK so that 10 year old gel blob ERRRR I mean dye! Well lets just say 10 years is too long to store it! LOL For some reason green was still working and while your checkin it out mom let me just take another peek at what this programs about on tv! LOL OK so I thought since that green was still fairly moist then why not try the hot pink. Surely it will show up right? Wrong! AND I must say Jophies expression is priceless! I guess after the colors had gotten all mixed up what was spose to be a nice pretty pink turned out to look like Dog dooooo! This is what Jophie thought of it! ROFL! We had to stop after that one because by that time it was a blobby gel dried up mess anyways! So proud and note the Dog poooo one! Well that was our Easter and then he slept pretty much the whole day on Easter. What else? Ahhh! I managed to cut that little boogers hair! He was startin to look like the Shaggy DA. hehe Getting his hair cut along with a mannacure and peticure. NOW that looks much better! One more thing then I need to go to bed! It's almost 6 a.m. and YES I've been working on this crazy thing off an on since just before 11p.m. He has his new chair! Thanks to his ebay cyber aunies over on the BDB board Jophies now is styling in his new wheels! Thank you girls! We could never thank you enough! I have loads more pics to share but its loaded down enough for now! Jophies been able to go to the park 2 more times and swing! He's loving it! I'll have to post those pics another day. You see this? I took this just a few minutes ago! He thinks its a party and has yet to go asleep. LOL Now tell me...Does he look sleepy? Rotten little boy! hehe OK gotta scoot! Will update more when I'm not so sleepy and have more time! Thank you for your continued prayers. Trina(Who is looking upward on this day. I love you and miss you Sean! AND Jophie(who's resting in the loving/healing arms of our heavenly father)
Sunday, April 30, 2006 6:00 AM CDT OK I finally made it back BUT.....Yea Yea you knew there was gonna be a BUT didn't you? It's 7:00 and I haven't been to bed yet so I'm gonna go catch a couple hours before I have to start Jophies food and meds again at 9:00. I'm gonna do my very best to get back here later today that is if I can hold my eyes open! LOL I have loads to catch you up on and some really FUN things to share! Later Gators!! Trina and Jophie who are getting ready to ZZZZzzzzzzzz! Sunday, April 16, 2006 4:52 AM CDT Just a quickie here as it's almost 6:00 and I need to sleeeep! Wishing everyone a wonderful day filled with fun and many happy memories! Will be back later today with some really cute pictures. I'm just too pooped to post right now plus I'm hoping to get a few more today. We shall see. Later! Trina(Who is very thankful for this day when Christ gave all for me and for you AND for all the "Jophie" miracles that continue to unfold before my very eyes) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Saturday, April 8, 2006 4:43 AM CDT Well I made it finally! It's nearly 6:00 a.m. but I'm here! Gosh haven't these storms been terrible? We have been real lucky as they seem to be straddling us. We are getting high winds, lighting, and some hail but nothing compared to Tennesee. Please say a prayer for all those familes that have lost loved ones and have been affected for the last 2 weeks by these terrible storms. So much to tell since I last posted. Where to begin? Lets start with the biggest news. Jophies gonna be 13 on Sunday! OMGoosh! I can NOT believe my baby is gonna be a teenager. It absolutely blows my mind. Our plan is to have him a little party today. It will most likely just be the 3 of us. Jophie, me and his nurse thats working today. Some dear friends of mine were going to come but her twins came down with colds. Bummer! His party is Madagascar! He is sooo fascinated with that movie! One of his nurses bought him a little 13 inch tv for Christmas and the others went together and got him a dvd player and stand. The tv is small enough that you can lie it in bed with him and if you put him on his side his face is right up to the screen. I bought him some little headphones to block all the external noise and he just tunes right into that movie! It's so very challenging to find things that Jophie enjoys and I was thrilled to have worked out a way for him to see tv. Check him out! Jophie is still fighting Candida and has been for weeks now. I've had him to see his ped. 3 times now I think since my last update. He's also been treated for a couple sinus infections and one respiratory infection. He responded well by using the antibiotics each time which is a blessing in itself! It's been so long since we've been able to treat him at home and see him actually "get well". I just can't tell you how good that feels. Hmm what else? Ahhh! We are still waiting on the wheelchair. Last I heard from the med supply in Huntington it was being shipped on the 4th and I'm assuming that meant from Convaid to them. I'm going to give her another call Monday. We can't wait for it to arrive! Jophie received a quilt in the mail this week. It did begin as quite the mystery package! hehe Thank you Kristen for your part in this and a big Thank you to the students of Solon High for all the love and hard work you put into this. Jophie does indeed love his "blankies!" :0) Speaking of quilts. I've never gotten the chance to post a couple of the others he has recieved in the past. This particular one was given to him when he was in the hospital so sick back in 2004. Gosh has it been that long since that nightmare? Anyway, it was a group of quilting ladies but for the life of me I can't remember who they were. Ladies if you see this please drop me an email! Jophie loves Elmo and the ladies did a wonderful job of adding that to it! Now one more. This was from last Christmas and if I am remembering correctly is was made by a preschool class. How sweet is that!? Same for this one. If you see this and you had a hand in it please do shoot me an email! Ok next big news! You won't even guess what Jophie got to do Wednesday! He felt well enough for us to take him to the park! Ahhh! Doesn't sound big I know but for him this is huge! This is the first time he has been anywhere unrelated to the hospital or the doctors office in 6 years! Yep...You read that right. 6 long years! The little guy didn't know what to think AND the best part about it is...They have a handicapped swing at this park! Jophie gets this handicapped toy catalog that is just loaded with goodies for special needs kiddos but everything is pricey. I've looked at the swing for years but have never had a chance to try it out! Well he got to try that bugger out Wednesday! Check out these pics. Just A' Swingin! Look! It's Tom cruise havin a bad hair day! hehe AND last but not least a pic on this cute bridge in the park! I'm too sexy for this bridge! hehe The Boutique Angels will be having another charity auction in May for the Ronald McDonald House this time. I'll post the details when we get everything set up. Speaking of auctions. I've been trying really hard to keep my store stocked as well as a few items up consistently on auction. Every dime I make goes to help with Jophies supplies and other items not covered by insurance. If you get a moment check out my goodies. Who knows you might find something you like! :0) St. Jude is having Rememberance day for all these little ones. Please pray for all the families who have lost little ones who will be there and for those who are just beginning treatment or facing tough decisions as we speak. I'm going to be working on Jophies website a bit taking away some and adding some things over the next few weeks. I'm hoping to make it a bit more dial-up user friendly. I know a few of you have told me its hard to access. I'm on dial up too and it is mighty slow! Hopefully some of the changes will help. Gosh is there anything else? I'm sure there is but my peepers are slammin shut not to mention I need to get some rest so I can help him enjoy his party. Thank you all for your continued prayers and support. Trina(Who's looking upward) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Wednesday, April 5, 2006 5:40 AM CDT Sorry for the delay but Jophie has been sick and along with that comes his very demanding schedule. He's on the mend now and I will be updating later today as well as adding new pics! Hang in there I'll be back! Off to catch a few ZZZZ's right now! Trina
Tuesday, March 7, 2006 0:53 AM CST OK...Adding this quick Update: I forgot to add the biggest news of all! Easton and Louies scans were CLEAR CLEAR CLEAR! Wooooo Hoooty! Keep those prayers coming for my sweet little buddies! Stoppin in for just a minute. The St. Jude auctions did well and at last count we were at $2360.16! Go Boutique Angels! :0) A big thanks to all of you out there in caringbridge land who ran those bids up AND who purchased some of Jophies Jungle jewels! You know who your are ~~winks~~ Lets see what else? Ah the big story round here the last few days. I managed to get OJ poisoning! Yikes! Yep you read that right from Orange Juice. I'm still a bit wobbly, still runnin a bit of a temp and only toast and crackers sounds good. The good news is I'm mobile again! YAY! Let me just say that was some nasty stuff! I think myself I'm going to stick with Minute Maid or Tropicana just to be safe. I'm expecting a phone call on Jophies chair this week so thats got us excited. Can't wait to share those pics with you all. Had to take Jophie back to see Sherrie again. She put him back on Cefzil for 3 more weeks. His mouth was just nasty and he wasn't acting right. We both are thinking something above the neck as in sinus infection or mouth or throat...Somewhere in that area. Since he's been on the antibiotics there has been a dramatic improvement. Here's hoping we can knock this thing to the ground this time! He's still on the diflucan and oral nystatin and since Sherrie had me change up the way I'm giving the oral the mouth has improved alot! Still not better but much improved. YAY! Which reminds me. I need to phone for some scripts tomorrow. Making myself a note right now. Hmm..Anything else? Can't think right off hand and really I need to scoot as I still am not doing well in the upright position for long periods just yet. I started Jophies food and meds a bit early in hopes I finish a bit earlier. If my plan works I'm takin myself some motrin and hittin the bed myself before I fall over! LOL Be back soon! Thank you for all your prayers and continued love and support. Thank you all for the kind guest book entries. We so covet your prayers and kind words. All our love Trina(Who's resting in his arms tonight) and Jophie(Who's always resting in the loving/healing arms of our heavenly father) Tuesday, March 7, 2006 0:53 AM CST Stoppin in for just a minute. The St. Jude auctions did well and at last count we were at $2360.16! Go Boutique Angels! :0) A big thanks to all of you out there in caringbridge land who ran those bids up AND who purchased some of Jophies Jungle jewels! You know who your are ~~winks~~ Lets see what else? Ah the big story round here the last few days. I managed to get OJ poisoning! Yikes! Yep you read that right from Orange Juice. I'm still a bit wobbly, still runnin a bit of a temp and only toast and crackers sounds good. The good news is I'm mobile again! YAY! Let me just say that was some nasty stuff! I think myself I'm going to stick with Minute Maid or Tropicana just to be safe. I'm expecting a phone call on Jophies chair this week so thats got us excited. Can't wait to share those pics with you all. Had to take Jophie back to see Sherrie again. She put him back on Cefzil for 3 more weeks. His mouth was just nasty and he wasn't acting right. We both are thinking something above the neck as in sinus infection or mouth or throat...Somewhere in that area. Since he's been on the antibiotics there has been a dramatic improvement. Here's hoping we can knock this thing to the ground this time! He's still on the diflucan and oral nystatin and since Sherrie had me change up the way I'm giving the oral the mouth has improved alot! Still not better but much improved. YAY! Which reminds me. I need to phone for some scripts tomorrow. Making myself a note right now. Hmm..Anything else? Can't think right off hand and really I need to scoot as I still am not doing well in the upright position for long periods just yet. I started Jophies food and meds a bit early in hopes I finish a bit earlier. If my plan works I'm takin myself some motrin and hittin the bed myself before I fall over! LOL Be back soon! Thank you for all your prayers and continued love and support. Thank you all for the kind guest book entries. We so covet your prayers and kind words. All our love Trina(Who's resting in his arms tonight) and Jophie(Who's always resting in the loving/healing arms of our heavenly father) Saturday, February 25, 2006 0:26 AM CST We're still alive! Ahhh I'm so sorry! I have got to do better. I promise to try my hardest to update better. Before I start anything I'd like to stop and remember some of my dearest friends Tom and Jennifer Bowan. Exactly one year ago today sweet little Ben Bowen made his way through heavens gates. It's hard to believe that its been almost one year since you earned those baby wings. In that short time you managed to touch the lives of so many in such a special way. We will never forget you "Big Ben!". Your legacy indeed lives on. We look forward to the day we see you again and because of you we all continue to
We love you Ben Benjamin David Bowen Big Ben November 14, 2002 - February 25, 2005 Now to Jophie! He just finished up his Cefzil but I'm thinking he may need another round. I'll wait till Monday and then decide what to do. OK can I just say one more time how much I HATE Thrush!? ICK ICK ICK! Can you believe this poor baby still has it? His tongue and mouth is so nasty. He's still on the Diflucan and oral nystatin. Surely to goodness that stuff will die out. I can't wait just so I don't have to keep vacuming that nasty tongue! LOL I do have some good news. I think I actually have found a new girl to hire! YAY! We have waited so long to find someone. Now this will not cover all of his hours still but it will take up another big chunk leaving only a small section uncovered. I think I'll take it! hehe She seems to be really nice and has been through a host of tragedys of her own. She also has a child that just recently began having uncontrolled seizures due to head trauma and you know when things like this happen to a family they can't help but grow in compassion. I sense loads of it in her and I'm luvin that! Lets see what else? Ahhh the wheelchair. The medical supply place has the check in hand now. I spoke with them on Thursday and again on Friday a few times. Right now we have run into a little glitch with Convaid which is not surprising to me. Things thus far have gone quite smoothly compared to what I typically deal with often and sometimes daily in regards to equipment and supplies. I couldn't even begin to explain what its like fighting with insurance companies and med suppliers. You would have to experience this first hand to even fathom or better still believe what unheard of things occur. I'm certain some of you out there know exactly what I'm talking about. :0) In the mean time I wait. They will be calling me back on Monday and hopefully they will have ironed out the problems with Convaid and if not, I guess this momma is gonna have to expose her well sharpened, expertly trained to wreak havoc on med suppliers and insurance company CLAWS! They sound pretty dangerous eh? Just give me a call if ya need to borrow em. I'll share ~~winks~~ hehe Please remember Easton and Louies as they are once again having MRI's at The Jude. Please pray that once again these scans will be clean and free of any signs of tumor. Please remember Tom, Jennifer, and Eli on this day as they rememeber their sweet Ben. This will be so very difficult for them and I'm certain they would appreciate any words of encouragement you could give them. http://www.bens-story.com/pages/9/index.htm Also, please remember the family of Anthony Burger a gospel great who was the piano player for The Gaithers. I was so saddened to hear that during a gospel sing Anthony collapsed and died. He was only 44 and leaves behind his wife and young children. Nobody could play the piano like Anthony! He will be greatly missed by his family, friends, and fans alike. I know I will! All our love Trina(Who continues to look upward) and Jophie(Who remains wrapped in the loving healing arms of our heavenly father) Friday, February 3, 2006 8:07 PM CST We're still here! Sorry for the delay but Jophies been fighting another bug and I've been taking care of him. I took him to the doctor today and she put him on Cefzil. I'm not sure what kind of bug or where but hopefully this will knock it flat! He still has thrush so we continue the diflucan and nystatin oral for another 14 days and prolly a bit longer since this antibiotic will most likely make it worse. I hate the yeasty beasty! I increased his steroids back up a bit to cover his stress dosing. It shouldn't be too difficult to drop him back down as I only increased 2 doses by 5mg each. Hopefully in a couple weeks we can start the wean again and get him back down to 25mg again which was so close to his maintenance of 20mg per day. We'll get there! Baby steps...Baby steps! Lets see what else? I had his ped office fax the script for the wheelchair today. Normally we wouldn't need a script since the money was raised by our dear friends but, I was told by this med supply if I could get her a script then they would not have to charge us tax. Wellll, you bet I got the script! I'll save money any way I can. LOL They are supposed to call me Monday to go back over all the details of the chair...colors, accessories, size..etc and you know what that means! I can order it! YAY! Well, I'll have to work out the details on payment and such but basically the toughest part is over and Jophie should be stylin in his new wheels soon! I'll post pics once we get it. My dear friend Laura I told you about who had brain surgery. She is home and doing well! Thank God! Thats Laura in Ar pinkpinknpink This winter has been so odd but I can't say I haven't enjoyed it. I myself would much rather have just a little snow and then head straight into spring. Well it looks as though that is just whats happening this year! Spring is just around the corner and I can't hardly stand it! Dare I even think about possibly going to church on Easter with Jophie? It's been soooo long since he's been able to go. I do miss it so. There are so many factors to consider mainly the germs and then his overall well being as in.."Is he going to need suctioned throughout the whole service?" which has always been a main concern. Also, his ped will want to check the flu status because during the years we were able to go, there have been times that she told us to stay home because the flu was still to prevalent. Lately the suctioning has been a bit less so maybe we could go? Praying all things fall into place! We shall see. One thing IS for certain. I am going to make this Jophies best summer ever! He deserves one so badly! I will do whatever it takes to get my pool up and running so Jophie can enjoy all summer! Last summer that crazy thing gave me fits! I worked non-stop all summer trying to get it ready and next thing I knew it was fall. I think the pump is going to need replaced and I'm going to have to drain it so I can get it as clean as possible for him. I'm also guessing the liner is going to need replacing and, I know a few of the sandbags holding the steps down have ruptured so those will have to be replaced as well as the sand in the filter. I've got my work cut out for me but Jophie is SOOOO worth it! His birthday is fast approaching and I can NOT believe my sweet baby is going to be 13! A teenager! No way! It seems like just yesterday I was driving home from the hospital with him. Time does fly doesn't it? I'm still going to the Y and enjoying every single minute of it! I feel better than I have in years plus I'm getting to spend so much quality time with my parents. This is the happiest I have seen them since my brother Sean was killed in a car accident 3 years ago on May 4th 2003. His birthday was May 16 so he was just a few days shy of his 30th birthday. Gosh has it been that long since he died? THAT too seems like yesterday. I do miss him so and can't wait to see him again! Soon and very soon buddy! Well I need to scoot as I'm starving and I have no clue what I'm going to eat. Thank you all for your continued prayers, support, and kind words in Jophies guestbook. Please continue to keep Jophie close to your heart. Please pray this antibiotic will kill his current infection and that the other meds can rid him of his yeasty beasty. Have a wonderful Valentines Day! I know I'm gonna kiss and snuggle extra close to "My Funny Valentine" JOHPIE! :0) Love you all! Trina(Who's looking upward) and Jophie(Who's resting in the loving/healing arms of our heavenly father)
Tuesday, January 17, 2006 3:10 AM CST Hi all I have just a moment here and wanted to touch base on our last week or so. Jophies had a sick tummy and I still am not sure exactly where that was coming from but now he has thrush. Ick! It's been so long since I've dealt with thrush. He has yeast infections in his diaper area often but this is just down right icky. I feel so sorry for the little guy. He sits with his little tongue hangin out and just drools cause his mouth is so sore. His pedatrician called him in some Diflucan so he'll be on that for the next 14 days. She also called in some of the Nystatin liquid. He can't swallow it but I've been rubbing it on his tongue, lips, and cheeks in hopes that it will soothe a bit. These generally work fairly quick. I can't wait so he's not so uncomfy. I gave him something to help him sleep tonight because he just kept rubbing his face on his boppy and moaning and whining. I know it has to hurt. Hmm what else? Ahhh the prescription for his new wheelchair and for the suction toothbrushes are in the mail on their way to me. The script for the chair will keep us from paying taxes on the chair. AND, ugh on those stupid toothbrushes. They were denied AGAIN! I can't even begin to count how many times over the years they have been denied. SOOOO, we are trying a new prescription along with a new letter. My hope is if we can word it in such a way that we aren't using the word toothbrush then, we might get lucky and they'll pass it on through. I'm thinking something like .... Oral evacuation device used to remove debris and secretions to prevent aspiration, choking, and growth of harmful bacteria leading to pneumonias. Whatcha think? Does that sound like we're asking for a toothbrush or does it sound more like a piece of medical equipment which by the way IT IS. Unless you own a suction machine you can't even use these....Duh AHHH bout forgot! I have a dear friend who could use some encouragement and definitely your prayers. On Thursday she will be having her 6th brain surgery. Yep you read that right. Number 6. Her name is Laura...That would be AR pinkpinknpink Stop by if you have a moment and offer her some encouragement and read her story. She is an amazing lady. Ok I need to scoot. It's almost 4:30 a.m... Please continue to bend those knees and storm those gates for my sweet Jophie. Thank you all for your continued prayers and support. All our love Trina(Who's walking in SONshine) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Monday, January 9, 2006 4:12 AM CST Happy New Year late! LOL Well I started this entry around 5:30 this morning but decided I'd better catch a few zzzzz's! For the last month or so 2 of Jophies aids have been sick so I've only had one girl working which has left me no help on several days. Ugh! AND, you won't believe this. My phone rang around 2 a.m. and the ONLY remaining girl I have working has injured her leg and who knows when she will be back..UGH again. SOOO, I've went from a very tiring weekend right into what looks to be a very tiring week. I'm sure praying these girls get better and their injuries heal. Jophie has been doing well. I reduced his steroid again by 5mg and so far he has handled this drop. That now brings him down to 25 mg per day which is very close to his maintenance of 20mg! YAY! The little guy does have the worst boo boo on the roof of his mouth though and I did it! UGH! Well technically I didn't do it but I had a hand in it to speak. Jophie has his own little schedule and decides when and where he's going to do just about anything. Well at 3:30ish a.m. he decides he's gonna get all smiley so I grab the camera and throw a valentiney looking sweater on him. Ya gotta grab these moments when you can with him because like any other kid he just doesn't cooperate when I "PLAN" on taking his picture...LOL Anyway, I decided that I'd try and clean his teeth up a bit before the picture and those of you who have followed Jophie know the fights we have had with insurance companies denying his suction toothbrushes. Welll, I didn't have any but I did have one of the suction spongey thingys left from his last hospital stay. Of course with it being a sponge and all soft and everything I wasn't too worried about his mouth getting injured. (I have to be very careful with suction toothbrush because his mouth cuts and bleeds very easily which is NOT good when you immune system is compromised) OK knowing all that I start scrubbing his teeth. The suction sponges comes 2 to a pack with these little pouches inside that you bust which releases this peroxidey, minty solution. You then dip the sponge into this solution without covering the little hold on the handle which by the way when attached to the suction creates the suction power. So, now were ready. The sponge is all saturated, handle is connected to his suction machine ready to go. I started rubbing and scrubbing which he LOVES by the way and next thing I know blood is pouring out of his mouth! OMGooosh! Uck! It was everywhere. It took forever to clot and stop bleeding and do you know 2 days later it is still bleeding a bit?? What is up with that? It's worse to if he gets excited or agitated. UGH! Initially I had no clue what had happened nor where it was coming from. After I was finally able to slow the bleeding down I could see it was coming from the roof of his mouth. Oh and by the way....You should see me trying to stop bleeding in the roof of a child who is spastic, wild because he just sustained and injury, has a terrible clonic/tonic BITE reflex! OUCH!!! Let me just say it was an adventure to say the least and no I sustained no lasting injuries only a few scrapes and nibble marks...I've learned to be VERY quick when entering that lock jaw trap!...LOL I just hate it though because of course I'm worried it might get infected. So far I've been using peroxide on a q-tip to just dab on the roof of his mouth and then pulling it out with the suction. I can't let that stuff go down his throat which is also driving me crazy. The blood is definitely trickling down his throat which I am finding when I check his stomach contents and in turn is making him sick to his stomach. Poor little guy. I just can't wait for it to heal. Everything is still progressing on the purchase of his stroller style wheelchair. We are in the "gathering quotes" stage and I think we have found a medical supply that is willing to work with us. So far they have given us the best quote and after talking with with one of the sales people today, she said if I could get a prescription from his doc then they don't have to charge us tax! yay! The prescription will NOT be a problem. Also, another good thing is this med supply is in Huntington and are willing to come to my house and fit Jophie in the chair here since he's not supposed to be out around anyone because of GERMS! SOOO YAY on that too! I still am pinching myself over the kindess of all my dear friends from the Boutique Designers and Buyers Board who have made this happen! Jophie has so many things that are just beyond my reach. I had gotten to the point that I just push those things into the back of my mind knowing there was just no way. Little did I know how wrong I was! I honestly can't express how thankful I am to them for loving him so much to do this for him. Well I forgot to hit enter so now its almost 8:00 p.m. and I'm REALLY putting this entry in! LOL Thank you for you prayers and your support. All our love Trina(Who's still looking upward and trusting him) and Jophie(Who remains snuggled in the loving/healing arms of our heavenly father)
I'm thinking she should actually be able to start in March if the state stays on the ball with her paperwork. I'm so thankful to have found her and can't wait for her to start.
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