Intricate Surgery

We saw the pediatric surgeon, Dr. Haynes, today and the news is sobering. The operation will be extremely intricate.

The first step will be to get an MRA. Dr. Haynes needs to know how deep the hemangioma goes and also needs to look at its blood supply. This will be done this week or early next week. Aerin will be sedated and immobilized for the scan because the test is unreadable if she moves at all. Dr. Haynes and his partners will study the scan, as will Dr. Pozez (the plastic surgeon). After they complete their study, they'll all get together, along with the pediatric anesthesiologist, to plan the surgery. The surgery will be done at MCV, rather than St. Mary's. There will be 3+ surgeons operating on Aerin, as well as the anesthesiologist, and St. Mary's doesn't have the facilities for that many doctors. They also have board-certified pediatric anesthesiologists, which is very important.

The pre-op prep will be extensive. We will be having an anesthesia consultation, as well as the usual blood tests and exam. Bleeding is a major issue with this surgery. Aerin will likely require several transplants during the surgery, so she needs to be typed and crossed. Aerin is Type A+, but she has antibodies from all the Rhogam I got when I was pregnant, so finding a donor takes a bit more time than it ordinarily would. There is a chance that the bleeding would become dangerous, in which case they would stop the surgery and give Aerin a chance to recover. They would have to leave her open and go back in, so we're really hoping that doesn't happen. Aside from the bleeding issue is the preservation of function in Aerin's arm and shoulder. The MRA will tell us how difficult that will be. Lastly is the issue of cosmetics, which I couldn't care less about at this point.

Dr. Haynes told us that the chances of Aerin dying during the operation are slim. He was very kind and direct with us and his examination of the hemangioma was both thorough and gentle. He doesn't have any of the social problems that many surgeons seem to, which is especially nice for us. He also told us that it's very likely that Aerin will retain full use of her arm. Aerin didn't make a peep during the exam, to his surprise. She did cry when the nurse took her from me to put her on the scale. Aerin doesn't have any stranger anxiety, but she does have some major separation anxiety. That's perfectly normal for her adjusted age, so c'est le vie.

I spoke with Dr. Al-Mateen, who returned my call from his NICU in Virginia Beach. He'll be observing the surgery, which is a huge load off my mind. He told me that there's almost zero chance of Aerin not surviving the surgery and that he's never heard of any child who didn't survive. We are so blessed to have such wonderful doctors caring for our baby.

In order to prepare Aerin for the surgery, Andrew and I have to put as much weight as we can on her. We're going to see if she'll take whole milk and stuff her full of Cheerios. Aerin is just such an active baby that she burns a lot of calories, so we'll see what we can do.

I have to admit that I'm still having a hard time with this. The surgery will be in late November or early December, which is the same time she almost died of pneumonia last year. It seems that every doctor we see, the news gets worse. I'm very apprehensive about what the MRA will show - I'm hoping for the best, but preparing for the worst. I just try to remind myself that Aerin is my little steel magnolia - dainty on the outside, tough as nails on the inside. G-d has watched over Aerin her whole life and I know He will be with her during the surgery; I just can't help wishing He hadn't chosen such a rocky path for her.