We are leaving the hospital! Nervous about giving up the resource of the surgeons and nurses, but looking forward to getting Leah unhooked, cleaned up, and out of this hospital room!
Thursday, October 24, 2013
Two eyes opened...
...and the only IV left (which she still hates with the fiery passion of a thousand burning suns...)
Much improved!
The good news is that Leah is doing very well today. She we moved out of intensive care and on to a general surgical floor. While we miss the fabulous nurses on the seventh floor, we like the progress the move signifies. Her heart monitor was removed, which is another good sign, and they are now just taking her vitals every four hours. Best of all, her swelling is down, and her left eye is especially looking great.
More good news: David convinced me to leave the hospital last night and sleep at Dara's house while he stayed here in an armchair with Leah. As a result I got almost eight hours of solid sleep, so an feeling like a completely new person. This is all much easier to face when one has a fabulous husband!
Today we are hoping to talk in depth with Dr. Taylor about how we are going to manage care of Leah's distractor and how we can help her to manage it.
Wednesday, October 23, 2013
A little bit of daylight
Leah can finally open her left eye a little bit. This afternoon she has been awake and looking at us out of the opened eye, and even playing a bit. One of the nurses gave her a bath because she is still covered in dried blood and surgical tape residue. She is still uncomfortable from all the swelling, so she didn't love the bath. But once she was cleaned up we held her for a while and she fell asleep again. The nurse took out the arterial line going into her neck, so that makes it much easier for us to hold her. Still, we are looking forward to the swelling going down some more in the next days.
Distractor Turning
A gentle heads-up: the text and photos in this post may not be appropriate for the squeamish...
Dr. Taylor came by our room this morning after the bandages were off to turn Leah's distractor for the first time, and to teach us how to do it. He explained that the device, which is like a wrench, will attach to the end of the distractor like a sleeve. The distractor and the wrench are hexagon shaped on the inside, so they have to be fitted together. Once they are fitted together, we turn one full turn in the direction in which the arrow printed on the wrench is pointing. This is obviously very important, since if we turn the other direction, we will reverse any progress, and this entire surgery will have to be repeated. Not a good scenario...
Each time we turn the wrench, it will expand the distractor by .5mm. Since we will turn it twice per day, we are expanding the space in her skull by 1mm per day, and since we are looking for a total expansion of about 20-30 mm, this will be in place for about 20-30 days. At that time, we will come back to Philadelphia to have the external part of the distractor removed, while the internal part will remain in place until Leah's second surgery, which will probably happen sometime in January.
All of the doctors who have seen her incision say it looks great, and that she is doing better than expected. She continues to drink bottles well, and has wet diapers, so we know her usual systems are working. The nurses took out her arterial line this morning as well, which she did not love. It bled pretty substantially, but they managed to clean her up a bit and give her some more morphine, so she is now sleeping comfortably.
Some incision and distractor photos are below:
Bandages off
The plastic surgery team was in this morning to check on Leah. She had been awake and upset for a good while before they came in, and I had just managed to calm her down, so I was a little dismayed that they decided to remove the bandages at that exact time. But they pressed on and cut away the bonnet, then started to unwrap. There was a lot of gauze, then several layers of antibiotic padding which they took off a little more carefully because it was up against the incision. They checked her incision with a flashlight and said it all looks great. Then they stepped back and let me have a look.
I was seeing quite a bit all at once, so it was hard to take: her shaved head, more swelling of her whole head and neck, the ear-to-ear incision, and the distractor. Frankly, it is awful. I was trying to prepare myself for it, but I have apparently failed. It will take me a few hours to become comfortable with it before I can post photos.
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