Surgery Updates (and plastic surgery info)

3:00pm UPDATE

Just wanted to let you know that she's out of surgery and sleeping well. The surgeon is great and said that everything went really well. They were able to do it laproscopically, with no problems, so we are really happy about that. He also saved her g-tube site, so we're thrilled about that! He saved her peg tube for me to see. It was MORE than due to come outta there! I am hoping that maybe that could have been the cause of some of her stomach irritation. Guess I'll bounce that off them when they come to check on her later.

She has a mic-key button now, which I'm pretty excited about. No more sewing button holes in her clothes (thanks, Mom) and hopefully less of waking her up to connect or disconnect feedings, give meds, etc.

The surgery ended at almost 2:00pm. So, she was in there for six long hours. The waiting got very difficult there near the end. I guess it didn't help that I was hungry. Plus, there was some miscommunication when they paged us and told us to go to the PICU because that's where she was. When we got there, she wasn't there. So, we went back and I had the girl call back there to figure out what was going on. It just didn't make any sense that the surgeon wouldn't come out to tell us what happened. She made a call and found out that she was STILL in the OR - so I guess they paged us by mistake. After that, they paged us and said that he was closing up and he would be out soon. We waited another long hour! I was getting very nervous. Then he came out and told us how it went.

They took her straight to PICU, our old home sweet home from one year ago. She is on the vent and they are trying to slowly cut back the rate so we can get her breathing on her own again. She is quite swollen, but hopefully that will go down soon. It really makes me dread the surgery in two weeks. I'm not looking forward to all that.

Well, that's about it for now. I am still hoping that they will discharge her tomorrow, but he warned us that it might be Friday. I will update as I can. Thanks for checking in!

8:00am UPDATE

Just thought I would let you know that they took her back around 8am this morning. She is something. She cried for a little bit when we woke her up (before 5am!) but then settled down and fell back to sleep in the car on the way down. Then when I got her out of the car, she woke up for good, and was in her usual good mood, despite loosing a few hours of sleep.

We went through all the usual stuff pre-op. I am really starting to dislike that whole ordeal. I made a medical summary that puts everything a doctor would want to know about her – all the usual questions, all her surgeries, listed in order, all her meds including concentrations, dosages, times, her feeding schedule, etc. And they still ask me every question – the nurse, the anesthesiologist, the OR nurse, etc. I tried to remember all the times she’s had anesthesia. I can’t recall. She’s had so many diagnostic studies which require anesthesia, plus her surgeries - this whole routine is growing tiresome! And it doesn’t help that we just spent most of the day yesterday doing the same thing. And we’ll have to do it again in two weeks. Ugh.

While I have some time I can go over what we learned yesterday…The neurosurgeon will go in and take a sizeable bone graft from her skull. Then he will replace it with cadaver bone. He said that her surgery is relatively easy (he’s not removing a brain tumor after all) but it is still scary knowing that her brain will be exposed. Kind of hits home how incredible it is that they can “harvest” the bone without doing major damage. He will shave her head from one ear to the other (like a headband) and cut her open there. Odds are that the graft site will not grow the same as the rest of her skull, so we’ll probably have to go in and do some more work on her skull in the future.

Then Dr. Magee will go in and do the jaw reconstruction. Based on her CT scan a few months ago, most of her bone structure in her face looks good (mainly cheek bones) which is great. She is missing a lot of the joint area close to her right ear though, and that complicates matters. He can’t fix that. So, although the bone from her skull “should” grow in her jaw – that won’t help her overall jaw growth. What I mean is that the slow growing part is in the joint, and that will always remain the same (since he can’t fix that). So, as she grows, the distortion will become more obvious (this is true about Goldenhar Syndrome from what I understood since the beginning). So, what that means is that in all likelihood, we will be looking at some sort of revisions down the road. I have to admit that I was disappointed to hear that both areas will require further repairs.

All of the wiring will be under her skin in her face, and then through her jaw. That should minimize scarring, which is good. Hopefully it will work and all will be great come fall. We’ll just have to see.

It was a long day because we also met with anesthesia. I am VERY nervous about her having this major surgery with no cardiologist following her. So, we are working on a way to make that better. We still don’t have an actual surgery date. It will be either the 2nd, 3rd, or 4th of June, that’s all we know at this point.

I will say that if you ever think your life is hard, just go to a pediatric craniofacial clinic. You will go away feeling very blessed. Well, I will update more later. Thanks for the prayers and thanks for checking in!

Take care,
Christy