Friday, May 27, 2011

Disappointing appointment

Today was a big day, or at least I thought it was going to be. I thought today was going to be the day that Desmond's surgery would be scheduled and all of my many questions would be answered.

We took the drive over to Jackson this morning for Desi's appointment with the neurosurgeon, Dr. Parent. Our last appointment with him was in March. He sent us to all these other doctors and said once they reported back to him he would be able to answer all of my questions at our next appointment.

So, again I arrived with typed list of questions in hand and recording app at the ready so I could make sure not to miss a single detail. And after all the waiting and anticipation and hope that this was the beginning of the end of this process, he barely spoke with us for five minutes. He told me the same thing as last time. At the next appointment, the pre-op, "at that time I'll be able to sit down and spend time with you," he said. Added to this frustration is the fact that the surgery hasn't even been scheduled yet and they say it may be August before they can fit him in.

We managed to squeeze a few answers out of him and the nurses were happy to answer as many of the as they could.

1. Q: How many of these surgeries does he perform per year?
A: Easily over 50 last year just for the sagittal craniosynostosis.

2. Q: Is it better to do the surgery before a year old? Do the outcomes vary depending on the age of the child?
A: Before six months would have been easiest. After that you've passed the time so it doesn't make any difference whether they're seven months or ten months. The success rate is all within the same range.

3. Q: Will we be able to donate blood specifically for Desmond?
A: They will ask you to give blood in the name of the child so it is going directly to him.

4. Q: What does recovery look like?
A: He will be in the ICU for the first day after which he will be in a regular room for five days to a week. He will then get to go home if everything is going well. He will return in about every two to three weeks for a checkups and gradually fewer checkups.

5. Q: how long should I plan to be off of work?
A: Three to four weeks at least.

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