Wednesday, May 12, 2010

Day +63 Things are looking GREAT!!

Okay, so I am going to start this blog by listing some AWESOME facts:
1.) Kyler is eating and drinking on his own w/o the feeding tube (this past saturday he decided to throw it up and has had a much better appetite since:) )
2.) Kyler is on ALL oral meds and is doing AMAZING with all of them EVEN the Cyclosporin which they warned us he may either, not take, or throw up. he drinks it like its juice :)
3.) Kylers counts are AWESOME!!! Platelets are 187K and white blood cells were 9K
4.) We MAY be going home soon if he continues to eat/drink and get enough nutrition on his own.
5.) His sinuses are MUCH better :)

Now, How it all came about because is it a very interesting story :)
Kyler had his TP feeding tube (which goes deeper than a NG tube) placed two tuesdays ago. Well by the end of the day he had thrown up so much that we just knew it was NG again. Long story short they managed to get his feeds up to 40ml/hour after two weeks. This past weekend he was very nauseated and was throwing up a lot. The tube then proceeded to get clogged up. They had an xray done to see what position it was in and to our amazement/ shock it was STILL TP!!! That was on saturday during the day. Well, Saturday night Kyler threw up FOUR times which was a lot more than he had been recently. I got up with him to do my routing diaper change around 2am and he started vomitting for the fifth time. Well, as we always do I was holding the tube and having to push it back into his nose every time he would gag/vomit...I looked down and here the tube comes OUT OF HIS MOUTH!! I called the nurse and in the meantime I pulled the tube completely out through his nose. As soon as the tube was out he was SUPER thirsty and drank 3/4 of a caprisun. The next day he had a small appetite and by monday of this week he was eating/ drinking like a little piggy compared to what he had been doing. Coty and I and the doctors were SUPER exicted!! He has done so welland as mentioned before yesterday he was put on ALL oral meds other than his antibiotic.
Now, about going home. WE MIGHT be going home earlier than originally suggested or it could still be next week. We have to do several things to go home. We have to make sure his oral cyclosporin levels are good,make sure he is getting enough calories/fluids and do several "check out" things such as tutoring about at home care (even though we had been doing most of it before all of this) ordering certain things (like his ID bracelet which super-mommy (me) has already ordered LOL ) and we have to make payment arrangements etc. Other than that we are one foot out the door and let me tell you...I truelly believe the day we leave Kyler will miraculously start walking/ running to the car LOL I know he is JUST as ready if not more to get out of this room as we are.We are so proud of him. He has done amazing through everything!! He is my little trooper!
With that said...just some extra "notes"....He Is Not out of the woods yet. For the next 6 months or even a year ANYTHING can happen.Even though his WBC's are great he Does NOT have all of his lymphocytes back yet which are his viral fighting WBC's. He is on an anti-viral that he will go home with but that wont completely block out viruses. We really dont want that sweet baby to be back here after everything hes been through so as much as we want everyone to see/ love on him we are asking that everyone remember his health comes first and he is not 100% yet, so we will still be as careful, well actually more so than we were pre-transplant. It isnt anything personal...but our little Kyler monkey is the most important thing in the world to us and we wont let anything jeopardize his health and everything hes been through. Once everything is almost back normal we would LOVE for everyone to come see him love on him etc. We will be letting people see him, we will just be VERY particular about colds/viruses other children etc,and we will let people know when we feel he is ready for visitors.We want him to get settled and make sure going home doesnt reverse all of the good things weve , well actually HE has accomplished. Thank you all for your prayers and encouraging comments through all of this. Love you all!


  1. 'Tis a joy to my heart to hear that he is doing so well. Prayers continuing.

    What's the urgency about the ID bracelet? Am I missing some element of BMT protocol?

  2. Bob- Thank you! About the bracelet...This hospital requires that you have a bracelet telling what kind of blood must be transfused if needed (lueko filtered) incase of an accident/emergency etc and if there is ever a situation where he has to go to another hospital that doesnt know.

  3. Hi Jill,
    Just Wonderful to hear all the good news about Ky. He is a super kid and has a Super Mom!

    With continued good wishes for wonderful health and happiness for all of you.


  4. Thanks for the explanation. I suspected something along those...lines. (I think there's a pun in there somewhere.)

    As part of the research at NIH they once harvested some leukocytes from me, meaning, I suppose, that they put my 'filtered' blood back in. (I believe leukophoresis is the fancy word for how they do it, using an electromagnetic field to differentially separate the different blood cells based on their differing charges.) Fully leaded out one arm, unleaded back in the other...and me sitting still with unbent arms for 3 hours.

    I dearly hope Kyler didn't have to go through that, and if he did, not too many times! I was antzy enough in my thirties; I can only imagine a toddler crawling the walls within a half-hour. But then again, you've reported that he's done so well through much worse stuff...he'd probably have shrugged that off, too.


  5. Bob- oh no luckily he didnt have to do that...someone else did it so he could have there blood! LOL J/k...Im am VERY thankful there are people who go through that for sick children.:)