Medically, Matilda is doing very well. Her six month transplant-iversary was a huge milestone. It means that we will begin weaning Matilda off of her steroid soon. This will be fun because we will get to see if those cheeks of hers are really hers or just a side effect of the medication. It will also be scary because this is when liver numbers can take a dive and rejection is nothing to take lightly. The truth is that we were very well aware of what was going on around us while we were in the PICU and we saw lots of transplant patients coming and going while weaning off of steroids. I am also uncomfortable with the speed at which we are able to get our lab results to the transplant team. We drive to a nearby town, they send the blood to a different town, who processes the blood and sends the results back to the hospital, which then faxes them to Mount Sinai. It takes about a week. Which is fine when everything is fine, but what about when things are not fine?
So we are working on making that process as efficient as possible. In the meantime we are adjusting some of Matilda's other medications. Not a big deal, just small adjustments to make sure her anti-rejection medication is right where it needs to be. It was a little low last week.
Remember when we first moved Matilda from the hospital to the Ronald McDonald House? We were giving her medications every two hours from 6am until 10pm at night. She is now down to five medications total, eight doses in a day (four at 8am, four at 8pm). We will take her to Syracuse next week and then back to NYC in June. She is doing so well, and we are so proud of her.
