Leah is still very groggy, and when she cries her voice is very hoarse from the breathing tube. But she's hanging in there...
Monday, October 21, 2013
Distractor benefits
We are learning that there are some added benefits to having chosen the distractor surgery as the day goes on. We anticipated that they would install a drain in Leah's head to deal with the excess fluid, and that the drain is pretty noticeable and uncomfortable for babies. Since the distractor placement requires less time in surgery and can be considered less invasive than cranial vault reconstruction, the surgeons don't use a drain during distraction surgery. We were relieved to hear that, as it was part of the recovery we were most dreading. As a result she is leaking some blood and fluid from the back of her head since the drain isn't taking it away, and it's causing a bloodstain on the sheet behind her head. The nurses asked the plastic surgeons and neurosurgeons to come up and look at her bandages because of the bleeding, but they did and said it was of no concern at all.
We know that many children with coronal craniosynostosis have related issues with their optic nerve and eye muscles, especially on the side of the fused suture. While Leah was given a clean bill of health from the eye doctor last week, we will need to monitor her closely in the coming months for eye issues as the space around her eye changes and the pressure levels in her skull change along with it. When he was meeting with us after the surgery, Dr. Taylor said that he is working with Leah's ophthalmologist, Dr. Forbes, to study "cranio" kids with distractors to see if they have less need for later eye surgeries. While the usual rate of additional surgery is about 50%, at this point they have had NO distractor patients who have needed eye surgery at a later point. It's obviously very early to tell if that week be the case long-term, as they have been doing this surgery for only a few years, but he did say it's another reason why they are increasingly turning to distractors to treat coronal craniosynostosis.
All is well
Dr. Taylor came to talk to us, and said everything went very well...he said it was 100% as it should be. The bone was solid and in good shape, which means there was good surface on which the distractor can be affixed. In his opinion, her blood loss was minimal for this kind of surgery, and the anesthesiologists gave her 150 ml during the transfusion.
They are finishing surgery now, taking out her breathing tube, and will begin to wake her up. Her head is going to be bandaged, and that bandage will stay on until Wednesday.
We are now in the NICU, in another small waiting room, and may be here up to an hour while the surgeons finish and bring her up.
Finishing surgery
We just moved to a new, private waiting room because they are finishing the surgery. Dr. Taylor will come to talk to us, then we will go to the NICU. They will remove Leah's breathing tube and when she is breathing on her own completely, they will take her up to the NICU as well.
Transfusion
The doctors told us they would start a blood transfusion for Leah when the neurosurgeon started to work at the front of her skull. The head is full of blood-rich vessels, so they told us to expect a substantial amount of bleeding. Dr. Taylor told us it's likely that Leah will lose her entire volume of blood during the surgery. To keep her heart, lungs and kidneys from knowing that her body is undergoing surgery they start to give her blood right away. Because neither of us match Leah's blood type and because they prefer to use whole blood, the blood is coming from the Red Cross blood bank (which makes me thankful that I have been a blood donor for years...).
Neurosurgery
Our nurse just came out again with another update. The anesthesia team has finished and is stepping back to let the other surgeons start their work. Dr. Taylor goes first and makes the incision, which goes across her head from one ear to the other. He did that part at 9:35 a.m., and now the neurosurgeon, Dr. Heuer, is taking over.
When Dr. Taylor spoke with us earlier this morning, he asked if we wanted him to shave a strip of her hair where the incision will be, or if we prefer him to shave her whole head. We opted for the second, which seems like it will be easier to care for, and will mean her hair won't get caught in her distractor when it is turned. Dr. Taylor said that he supposed this was her first haircut so he would save her hair for us, which I appreciated very much. The last thing he said to us was that, when he got into the operating room, he would treat her as if she were his own daughter, which was incredibly comforting.
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