Day 153

Jacob continues to struggle with various problems. Earlier this week we noticed him getting tremors and getting dizzy and discovered that he was hypoglycemic. Further investigation revealed that his cortisol level was zero, which indicated that his adrenal glands were not working from long term use of steroids. He started on an oral hydrocortisone immediately and seems to be doing better in that aspect. Another problem he's been having is a low grade fever for the past week. All cultures have come back negative, so we are going to stop the neupogen injections to see if he was having a reaction to that. The final problem is that his hemoglobin continues to drop. He is getting a blood transfusion today, so that will hopefully perk him up. He is going to taper off his other immunosuppressant, tacrolimus, because his doctor has ruled out everything else and he believes the problem is medication related. Luckily that is an option because he does not have any evidence of gvhd. Jacob is eating a little, but he is still on 16 hour a day tpn and is now also tolerating some slow feeds, so we are hoping to slowly transition him off of the tpn. It's hard having him hooked up to pumps for the majority of the day. We have to follow him around the house with his iv pole any time he wants to move. It's rough, but better than having him stuck in a bed in the hospital. I'm glad we are able to care for him at home.

Here are some pictures from today's visit. Our appointment has lasted 8 1/2 hours and we still have to stop by the pharmacy. Plus now we are going to hit LA commute traffic... But like I said, at least we are not in the hospital and we can sleep in our own beds.