Max is sick :(

Here we are again in the hospital. It's been a while since our last overnight stay at the hospital so I'm out of practice, cranky and exhausted. Max hasn't really been having a great time either. So here's what happened. On Saturday Max spent the day vomiting and not eating or drinking much of anything. He threw up 3 times and was pretty weak, but playing all day. Then he had some Pedialyte through the night and looked like he was getting better Sunday morning except that his temp went up to 37.5C. And then came a little bit of diarrhea and then Max's temp went up to 38.6 and after a conversation with the Cincy doctor on call, off to the emergency room we went. Why did we go to the ER for something that looks like a stomach virus? Because Max has a port and with a port, there is always the threat of an infection. When there is a fever, there may be bacteria floating around in Max's blood causing trouble. So here we are. We're still waiting for the blood cultures to come back but so far nothing has grown, thank G-d. Anyways, Max's fevers and diarrhea are continuing as would be expected with a virus, but just in case, Max is on an antibiotic. I'm really hoping that tomorrow evening we can go home with clear cultures and they won't make us stay any longer. Please G-d let Max's engraftment go up so that he makes enough enzyme that he doesn't need ERT and we can get rid of this stupid port!!! P.S. Please let that engraftment go up without the need for another transplant...:(

just an update

Well, I'll get to the point. After 12%, Max's engraftment went back to 13% and today's news was 15% so we're still on the roller coaster, just at a lower point. Otherwise, Max is doing well and we're enjoying it!

Engraftment

most recently 12%. starting to seriously plan another transplant. :(

pictures!

Engraftment

15%. The DLI did nothing.

we've been having too much fun to update

So Max had his DLI a few weeks back on a Tuesday and we went on vacation to Rochester and had a great time. Max got ERT at Children's Hospital in Buffalo (it was great and the nurses were awesome) and since we had no orders to take an engraftment level, we kind of enjoyed a vacation away from that too. It was very nice, we LOVE vacation!!! Max's engraftment level went from 16% in the last update, to 17% and then down to 14% the day of the DLI, before any cells were given. Now that we're back in Louisville, Max had ERT here and they took an engraftment level which we can now worry about until Tuesday or Wednesday of next week. I really enjoyed not worrying and just having fun with Max, but life is good so I can worry a little too. Enjoy 2011 and a happy belated new year to all. I'll post some pictures next time, I promise.

After 13%, we got 14% and 16%. We were in Cincinnati today and spoke to Dr. D, we decided to try another DLI. One more big boost to see if maybe it may work. It's scheduled for this coming Tuesday, and I guess it's worth a try. Otherwise, no change. We also saw the hand Dr. C and he was just thrilled with how Max's hands look after the surgery!