Tuesday update

Well, we didn't go home on Monday. It looks like we may be here until this weekend, possibly the beginning of NEXT week as well. I am thinking of flying home Thursday though, so I can see the kids and get some other things in order just in case Gavin gets another offer this weekend. Its been really hard for me though...everytime I look at flight schedules and think of packing my bag and calling a taxi I start crying. I just don't want to be so far away from Gavin. I am just really hoping that on Thursday they can give us a more definite idea of when Gavin will be able to leave.

Things that have been keeping us from going home are:

- Gavin has needed blood transfusions every other day this week, in comparison to once a week before. That is not so good news. His doctor said he may need to be in the hospital until transplant because of it, but that we can at least transfer him back home to the hospital in AZ eventually. That is really not good news. It has been kind of rough these last few days for me, because everything is starting to feel "real" again, and I can feel him slipping into this scary place where I do NOT want to go!!!!

- Gavin did end up catching Andre's cold, which put him off the list for a couple of days until the lab results showed that it wasn't a viral infection (that was just tonight). So starting tomorrow, he is back on the list! He was all congested and snotty the last couple of days, but is starting to look (and sound) better today, and his appetite has increased a lot! Thankfully he is off contact precautions (again...the C-diff turned out negative, too) so tomorrow he can FINALLY go in the playroom!!! :D So that's good news!

- Gavin has a strange scabby, hard purpley-red thing on his stomach that started a few weeks ago as a skin irritation/breakdown from tape. Somehow it has turned into this ugly, angry looking thing. The Infectious Disease team and the Dermatologists have been streaming in and out today to look at it, and they will biopsy it tomorrow to see if anything grows, like a bacterial infection or a fungal thing. That will take 1-3 days, so I'm really hoping we get the results soon, because that is pretty much the only thing left keeping us here. Another idea is that it could be Alpha-1 induced Panniculitis. That would extremely rare and very strange, and none of the doctors have ever seen that before in person. Once again Gavin has to prove beyond all doubt that he is a very special little guy! :P

So that's where we're at. Today two different teams of 2nd year students came in to see Gavin and hear his history. Andre and I got to tell them all about what happened, how he was diagnosed, etc, then they asked us questions, and got to examine Gavin. It was very interesting and fun! I was really happy that at least there are now 20 doctors out there who will never misdiagnose Alpha-1 or wait to give their newborn patients a blood test for jaundice!!!

Last night Andre and I managed to slip away for a couple of hours after Gavin went to sleep and we walked down to Westwood Village to get something to eat. It was really nice and relaxing. We really do love Los Angeles...it's a beautiful city and the weather is so nice and you can just faintly smell the ocean. And no matter what time of the day or night, there are always people walking around. It's so nice to have everything so close by. We probably won't even need our car here during the transplant.

Starting tonight we're both sleeping in the hospital room b/c we didn't want to keep paying for a hotel room. That should be interesting! :P