Sunday, July 01, 2012

Day +85

Jacob had a good 36 hours with no fever. Unfortunately, he began spiking again last night.

He is still not allowed to eat or drink, which has been very hard on the both of us. It goes against all instinct to deny him food and drink when he is begging and begging all day long. I have to trust that the team knows what they are doing by putting him on gut rest.

This is all terribly discouraging. His recovery had been going so smoothly and then got hit with adeno, c diff, pneumatosis, and mostly likely gvhd all at once. His endoscopy is tomorrow, so we will get confirmation of the gvhd, but usually pneumatosis is a symptom of gvhd, so they already started him back at square one with the steroids. It's more than his fragile system can bear.

Yesterday I also found out that he has lost bone density due to the long term use of high dose steroids. He is on calcium supplementation, but it just isn't enough. This could lead to bone fractures.

I am feeling very defeated. The bad news just keeps rolling in.


Trisha said...

I know nothing I say will make this all better, but please know that you all continue to be in our daily thoughts and prayers! I know from experience that being isolated from friends and family during stressful times makes this all much harder. You are doing a great job! Sending big hugs your way!

Wendy said...

So sorry Kylene. The misery of you and your family watching your little boy suffer all of this...wish there was more we could do!