Sunday, April 11, 2010

Day + 31 and Day +32

So far Kyler is doing good. They took him of of GCSF so of course his counts dropped but they are working their way back up on their on. His platelets are starting to hold a little better and so his his HGB. The biggest issue now is the nausea/vomiting. The doctor has decided that he is going to scope him this week so we can find out what is going on so we can hopefully start treatment, get him back on oral meds (they were oral then had to go back on I.V) and then hopefully get home so that the Three of us can have our family time together at home :) I am so ready to take him outside to play etc (which it will be a while before he can go anywhere.) I was strict before his transplant when he had some immune system. Now that he has very little immune system Im going to be super strict :) The doctors said to expect it to atleast be 6 months or so before he starts being able to go places, around crowds etc. Thats ok though. Mommy and daddy can find plenty of ways to make home fun for him :) I think he will be so thrilled to have the whole house to play in instead of one room that he wont even notice that he isnt getting to leave for a while :) This week they are going to do a test to see how many donor vs his cells are in his body since it is taking longer for everything to come up on its own. They dont expect there to be any issues with that though. As far as everything else goes, he is off antibiotics, almost off pain meds, and is only on his important meds. (Anti GVHD anti fungal anti virul) and his stomach meds (which there are quite a few of those)
Now fun information. I finally taught him how to blow kisses :) He can now stand up by himself (well holding on to something) for a few minute before he starts losing his balance and today he walked from side to side of the cot holding on to it. Super cute!! He can say "Night night" even though he very rarely actually goes to sleep after saying it LOL :) He is getting SO big!!! I cant believe my precious baby will be 1 year old thursday (The 15th). This year has flown by. It has been the best year of Coty and MY life :) OH and the other day his doctor came in (who he loves) and I kept saying "theres Dr. G" and Ky started saying doc doc doc when he was leaving :) There has been a LOT happen but I havent had time to update in a while and its too much to type :) I included the basics though:) Well, Ky was asleep but then they gave him ativan and now he has his happy going and is calling for mommy so I better go! Ill update when I have a chance. :)
Okay, Well I typed the above part yesterday and forgot to post it, so I just added todays to it :). Today Kyler had an NG tube put in. They are hoping his stomach just needs to be stimulated since it hasnt been used in a while. If this doesnt work then they will do the Scope.He did GREAT with the Tube. I played with him and they cuaght him off guard and just put it in. He didnt cry or anything, Just sneezed a lot and as expected he vomited quite a bit afterwards. I was so proud of him though. They were shocked at how good he did. I joked and told them they should be use to how good he is by now. We make a good team...I keep him distracted and he lets them do pretty much whatever they want as long as I stay with him. :) If the scope doesnt show anything they will have to do a more permanant tube. His counts are still coming up. OH And I realized I forgot to mention that his lungs were all clear on the CT scan YAY!!! That was a HUGE deal I just didnt realize I hadnt updated since then. Ive been busy playing with my little boy :) Other than that nothing is different today from yesterday. Please Keep Him In Your Prayers :)


  1. Yay! So glad the CT scan was clear! Going home will be really nice for y'all. If you have a back yard or something like that, he can even play outside some as long as it's not in the sun. We used to take Ayden on walks at dusk before it got too dark, but after the sun wasn't shining on us anymore.

    Here's hoping for the NG tube to work! Quickly! We're still praying for Kyler every night!

  2. Hi Jill,

    thanks for the update. Glad the CT was Clear and that your little one is keeping you busy and happy despite all that he is going through.

    Many prayers for Ky to start eating on his own and to go home soon!