We stayed at the Ronald McDonald house; I was very grateful for being able to stay there and will encourage everyone to donate to them. Ladybug didn't sleep the greatest since she was in a strange place, but thankfully she didn't cry too much so our poor neighbors were able to sleep. 0430 she was wide awake... 0500 I gave up and just got up. We walked to the McD's next door for some breakfast and coffee, then started the cold uphill trek to the hospital. Just what I wanted to be doing... wandering downtown Chattanooga, in the dark, alone with a baby and no gun. Took awhile but I finally found the ER entrance and actually got to our appointment on time. Ladybug had it easy; she took a nap in the stroller!
I was very pleased with the staff at TC Thompson Children's Hospital. They were courteous, professional, and organized. I felt very comfortable with them caring for my child. The hospital itself was clean and beautifully decorated. I guess it's a children's hospital thing, but I loved the murals on the walls! We were in a jungle in one hallway, and her CT felt like it was in a stable! Would have been awesome if she'd been old enough to enjoy it... but I enjoyed it for her!
There was a team of three from anesthesia, in addition to the radiology staff, and the MD was very involved which was reassuring. They allowed me to go back with her all the way to the room next to the CT machine; I wasn't with her while they put her to sleep but I was next door and could hear her. I about cried when she started screaming about the mask, but I knew she'd be screaming just as hard even if I was holding her so I held myself together. It didn't take 15 minutes to do the CT, and then they let me in the room while they took the anesthesia mask off her and transferred her to the stretcher. That was the second time I about cried... she was so limp and unresponsive. But, it was good to see how many monitors they had her on and how careful they were.
She was asleep for what seemed like ages in the recovery room, but the nurse said she preferred to not try to wake them up because they tended to wake up a little happier. She assured me that when she woke up most of her unhappiness would be because she hadn't eaten in well over 12 hours. As soon as she stirred she pulled the artificial airway out and let me pick her up. Sure enough, once she realized that weird nipple I stuck in her mouth was Pedialyte she gobbled it down. Then they let me feed her the normal formula and after she held down 8oz of that we were free to go.
We found our way back to the McD house, this time taking a much shorter route after asking for directions! Ladybug was still sleepy so she and I took a nap before checking out of our room and heading back to the hospital for our visit with the surgeon. He had looked at the CT and said all her sutures were wide open; there was no indication at all of closure, not even any fibers. I presume fibers precede closing. So, that means no need for surgery at this point.
I'm comfortable in going with his opinion on this since it sounds like the CT was pretty conclusive. I don't quite understand how the genetic test correlates with everything; I'm probably going to be going to a local med school library to do some research on this condition. From what I understand, she has the gene mutation, and therefore has a 50/50 chance of passing it on each time she has a child. I also know some family members have shown no symptoms until 4 years of age, so we'll keep an eye on her. But, I wonder if it's possible to have the mutation and just have minor effects, like tiny ear canals. I also wonder if some people have the gene and the effects are so minor that they don't even realize they have them.
The biggest thing that worries me is that even the specialists don't understand the genetic part of this. I don't know if it's simply that no one has done research on the genetic forms of this condition, or if it's that most cases are spontaneous and don't get passed on. I also wonder if those with spontaneous mutations choose not to have children for fear of passing it on. Our family baffles doctors; we've had specialists say that this condition has to manifest itself by one year, but obviously that's not the case in our family. I feel like as a mother with some medical training, I need to learn everything there is to know about this condition, since it can affect both my children and my grandchildren. I also think it's important to learn what I can since it seems like very few medical personal know much about this condition. I've had to educate several people involved in Ladybug's care already.