Day +13

Daylon's hair is falling out, so I picked him up this new hat to help keep his head warm! Isn't he cute!!

Things have been moving along pretty well for Daylon. The best news is that his cell count is at a 9! Yes, that's right! A 9 (normal is 5-15)! His absolute neutrophil (infection fighting cells) is an 8!! Normal is 1-8! Oh my goodness! We are so excited!! I'm almost nervous that the tests are wrong the numbers are so good. The docs are completely shocked that his cells are coming in so fast! Due to the new cells, his Creatinine is at .72, down from the .98 of a few days ago (remember they wanted to start dialysis) and his wounds are FINALLY scabbing up! Plus were day 6 with no fever! Daylon went down to the OR today and had his G-tube changed into a G/J-tube so he can start feeds. The TPN is messing up his blood results, so they hope that putting food directly into his intestine will help him to process nutrition better.

There are a few hang ups, but it's nothing Daylon can't conquer! :) His weight right now is at an all time high. His at 13.9 kg which brings his water weight gain to almost seven lbs. That's a lot when you don't even weigh 25lbs to start with. This is more than likely the result of the V.O.D. I'm told that retaining water is one of the many fun (I'm being totally sarcastic) side effects of VOD. Thankfully, his liver isn't reversing the blood flow, so he's not too severe. That being said, the doctors introduced us yesterday to an experimental drug called, Defibrotide. It's not FDA approved for use, but it has been approved for some years now in Europe. There is a 10% chance of side effects like bleeding in the lungs or on the brain and a 1% chance of him getting nauseated or dizzy. Why couldn't it be the other way around? The hospital has used it on 18 kids and only 2 have had an adverse effect (one bleeding behind the eye and one in the lungs). Call me crazy, but doesn't that make the bleeding statistic 1 in 8? He's the first EB BMT to get VOD (VOD only occurs in BMT patients as a result to such extreme forms of chemo), so we don't have another kid as an example of what might happen for him. Brian and I read through everything and prayed about it and eventually decided to sign the form allowing the hospital to put him on the medicine. There is no other option at this time other than to wait it out. It's likely that if we do nothing the liver can cause the kidneys and other vital organs to fail resulting in death or permanent organ trouble. The doctors think he's a good candidate for the medicine so lets hope they're right. He's had several doses over the last 18 hours and will be on it for a minimum of 21 days. It will take several days to see the medicine start to work. Please pray that it will!

My parents left yesterday to head back home to California. It was such a nice visit. My mom started to get sick right before they left so that's too bad.

We lost our big room on the BMT unit. We had to move everything out by last night. I was so disappointed to have to peel my little decals off and take home Daylon's toys. It made the PICU stay feel permanent. I know it's not but I liked being able to go wander back to BMT and see Daylon's stuff waiting for him, like his was going to get better any minute. The PICU is depressing. I feel like I solider at times protecting a sacred monument that kids are trying to play on. There is a ridiculous amount of people coming and going, especially during the day. Yesterday by biggest annoyance was physical therapy. They wanted to move him around so his motor skills don't become delayed. Really? He's almost a year old and he sits. That's it. He can't roll, he can't crawl, he can't walk. I don't think that a 2 week coma is going to throw that curve. She was a nice enough girl, but I was going crazy with her moving him all around. She said that according to her notes, they've been working with him. Yeah, when he didn't have a tube down his fragile airway. Anyway, I shooed her away onto her next victim...which I'm hoping was conscience.

The other kids have kept busy with an attempted trip to a farm to pick strawberries with the RMH and a ton of Bar-B-ques. Plus having my parents around have helped to keep them busy with new people climb all over! All and all, things here have been good the last two days and we feel very blessed. Hope things are going well in your neck of the woods as well!