Thursday, July 28, 2011

Today we headed up to clinic for a follow up appointment for fevers and for a liver panel.  Both are great!  I havent had to give Sky Tylenol since Saturday night, this is the longest he has gone without it for months.  He will still get warm and will get up to 38.2 but they dont consider that a fever until it gets to 38.3.  At least its alot better than being in the 40's.  Also his liver enzymes that we were worried about getting too high with this new oral antifungal are hanging in there.  They are still elevated but not to a worrisome level so things are headed in the right direction.  Its been so nice not having to hook Sky up everyday.  Its a new, much needed freedom and its been wonderful.  One thing I wasnt expecting was that his ANC dropped from 5.3 to .9  His platelets also plummeted to 12 and his hematocrit also took a nose dive.  I wasnt surprised by these two numbers at all though because he has been bruising like crazy and he is so pale and tired all the time.  We will head back up to clinic tomorrow for a blood and platelet transfusion.

We also met with a physical therapist to assess Skyler's walking and to help us get him back to where he was before diagnosis.  He is still extremely weak and stiff.  She gave me some exercises to do at home with him and also a physical therapist will come to our house three times a week to work with him.  Another factor into some of his weakness is from not eating enough.  He has been really nauseous lately and is starting to get mouth sores again so he is starting to lose even more weight.  He is just stick and bones so I have decided to have them place a feeding tube on Tuesday with his LP and sedated hearing test.  Hopefully he wont throw this one up so we can get some meet on his bones.


Brittney said...

You are truly amazing. My heart goes out to you. You have endured so much and you just keep pushing forward. You are an inspiration to me. Thank you.

Kenzie said...

Crystal, I dont know if you remember me but I have been reading your blog for months now and just wanted to tell you what an inspirational strong woman you are. My son is five weeks old and we've been in the hospital twice in his short life and whenever I start feeling bad for myself I always think of you and how strong you and your little boy are. I dont know how you do what you do but you're amazing... I'm sure you know that. You guys are always in my prayers.
Mckenzie (hardy) graham

susi and adam said...

Oh Crystal I'm so sad that you have to keep struggling with all of this. I'm sure I would not come close to managing all of this with the strength and stamina you have. Poor Skyler... I can't think of another little boy that has my admiration right now more than he does. My heart is with you guys and I am remembering you guys in my prayers daily. I don't believe God has forgotten about you. It's just so hard to see through all of this right now.... Hang in there. Much love from our little corner and hope that tomorrow is a much better day!!