We are home -- yippie! Even though our doc was not too excited to let us go as Gavin is still not himself, he still let us go. Thanks Dr. R! Gavin is doing much better but his energy levels are way down. He has been taking very long naps lasting 5 hours and still sleeping up to 14 hours at night. He is still not sitting up on his own but his belly is also huge, which is probably the cause. His blood levels are not great and he will probably need to be transfused again next week.
So we are at home. Although home is the best place to be I was a bit overwhelmed tonight as I was trying to figure out Gavin's medication schedule. He is running four IV meds one lasting 3 hours, one 2 hours and the last one 1 hour. Wow. We will do what we need to do but this is going to be tough. Please pray Adam and I will find the strength and clarity of mind, especially during the middle of the night, to give Gavin the best chance at staying healthy. We can do it!
Gavin will be back at duPont on the 13th for his small bowel follow through and we hope to be admitted within the next couple of weeks to begin the Omegaven! I was told it would be at least a 3 or 4 day stay, which is actually pretty brief compared to places like Boston, but we know that Gavin will be well -- very well monitored. We never are more than a phone call or email away from our doc.
Thanks for helping us through yet another stay at Hotel duPont!