Monday, March 29, 2010

Day +18 GREAT day!

I havent updated in a while because things have been going good and have stayed the same the last few days. He hasnt had fever since last wednesday(which was the day they had predicted that his lungs would be so bad he would be in the ICU ) (Day +13) and hasnt had oxygen since last thursday (Day +14). They are cutting down on his meds especially his antibiotics and his morphine. He seems to be doing MUCH better! He has been waking up and playing and laughing and seems to feel a little more like himself again. It's SOSO great to see him like this again :) So, some POSSIBLE good news is that: for the last few days his WBC's and ANC has been on the rise. Well today his ANC is above 500 so if it stays that way for 3 days then today will be the official day of engraftment. I am super excited BUT I realize that in a matter of hours everything could change for better or even for worse. A few things we have got to work on now is getting his temporary line taken out and either a CVL or port put back in. They will decide which one based on rather or not it looks like he will be going home with TPN. With that said, we also have to start trying to get him to eat on his own again. A few things I am going to change, though, is that since he should be coming off of the bottle when he is 1 (WHICH BTW HE WILL BE IN EXACTLY 18 DAYS AT 4:38pm) I am going to start out with a sippy cup instead of a bottle. When he feels like it we also plan on trying to start practicing walking with him since he obviously has no use and/ or desire to crawl. I probably wont put him back in a walker since it seemed to make him want to walk on his tip toes even when he wasnt in it. A few other medical things that need to happen if he has actually engrafted is that in the next few weeks he will be switching from IV meds to oral meds (That part is going to be a little tricky.) So far everything SEEMS to be going great though! We are soso happy! :) He has kept us laughing the last few days when he is awake. He still sleeps a pretty good bit but he is having periods of time when he is awake and playful and happy. He's also still pretty nauseated..but that could be a mixture of things and should get better with time. I am SO proud of Coty and My little boy! I have been every day for the last 11 months and 19 days :) I have said this many many times BUT he is my little hero!! He amazes me every day! Thank you so much for all of your prayers! I know God has been watching over Ky and has taken care of him since day 1. Please keep praying for him! :)


  1. Hi Jill,

    Great news indeed! So glad that little Ky's counts are coming up and that his fevers are gone. Glad that you are able to enjoy your little one smiling again!

    Keep the good news coming.

    Best Wishes,


  2. Hey Jill!

    Yay! Great news! Yeah, Ayden completely stopped taking a bottle while we were in the hospital with him. The problem was, he also wouldn't take a sippy cup. The ONLY way he would drink anything was when I dipped a straw in something and gave it to him a little at a time. Needless to say, with that plus only eating a few jars of baby food a day and refusing formula completely, he went home on TPN. He was probably on it for about 2 1/2 months after we got out of the hospital until he started taking a sippy cup and we mixed powdered formula into his baby food to get him the calories he needed (I think we did 2 scoops per 4 oz. jar). The chemo can make things they used to like taste weird to them and it takes a while for that to wear off. It's a struggle, but don't get discouraged. Hopefully Kyler won't make that part as difficult for you as Ayden did for us! :-D

    Here's hoping today was Engraftment Day!!!