Warning: This information is largely for those who are looking for information on bone grafts in cleft kids, including myself since we will be doing this again in 4-5 years, but I won't remember any of this by then. All of it will be way to boring for most of you.
Pre-op
Kate went in for surgery early on October 3rd. Dr. N. had scheduled the bone graft to be done at a nearby hospital that we hadn't used before. Check-in was smooth, although we had to repeat the same information to the nurses several times because they both seemed to keep losing the information they just collected. The anesthesiologists were very nice, and one of them ended up holding Kate while she "went to sleep."
The surgery went very well, and Dr. N. was able to drill down into her right hip (iliac crest), remove some shavings, and then place them in her gumline to complete her upper jaw. It is actually much more complicated than that, but that is as much of it as I understand, so that is all you will get from me on that topic, other than to say no donor, cadaver, or synthetic bone was used. Dr. N. thought he would need to pull the left canine and molar (both baby teeth) so that he would have the space to repair the alveolar ridge, but thankfully he only had to pull the canine. That left him with enough room to work. The hole was triangle-shaped, and it had actually be growing in the last year. Before that it had shrunk it just a tiny hole.
The recovery room was difficult, but only because it is yucky coming off the anesthesia. That half-awake-where-am-I feeling isn't much fun. And about two minutes after waking up she asked when she could watch
Teen Beach Movie (ok, it was longer than that, but not much).
Once we got upstairs, we got settled in and popped in a movie, someone came around and asked if Kate had enjoyed her lunch. I was confused by this question since Kate was on a clear liquid diet, having just had surgery on her mouth two hours before, but I said, "No." The well-meaning tech then proceeded to ask Kate if she would like her to order some chicken nuggets for her for lunch. Ummm, no. Clear liquid diet. She then apologized and had some broth sent up, which Kate did
enjoy very much eat without complaining.
We spent the rest of the day in the bed watching as many Disney movies and TV shows that we could squeeze in. She was not interested in sleep. At all. She did so well eating and going to the bathroom, that by 5pm, Dr. N. said that she could go home in the morning as soon as we were ready, and she could eat soft foods that didn't require front teeth (pudding, ice cream, mashed potatoes, etc). Food services immediately brought her a sandwich. The tech was in the room when that happened, so this time nice tech lady sent them back with instructions to bring her more broth and some ice cream. I was just thankful I didn't have be rude again. I had already done enough of that, as you will see below.
Mmmm, ice cream and movies
There is no pediatric unit at this hospital, which means that some of the folks didn't know what to do with her. We had a day nurse that did not understand pediatric pain management. Usually, pediatric nurses come in and say, "We don't want her to be in any pain, so we will give the meds regularly until tomorrow morning, and then we will assess where we are and what she needs. You just focus on getting liquids in her." But this was not a pediatric nurse. I had to call her every single time meds were needed, and when she brought them it took forever. She also expected my six-year old daughter to rate her pain on a scale of 1-10. Puh-leaze. Just the week before, Will had tried to explain this concept to her. It wasn't going to happen. She said 5 or 6 every single time, whether she was fine or in tears. I asked why she couldn't just bring the meds on a schedule. The
mean nurse said that Kate had to ask for them. As if a six-year old has the life experience to predict when her pain meds are going to wear off and when she might need more.
When the night nurse showed up, I asked her right off the bat what our pain management plan was. She said, "Well, the patient is supposed to ask for pain meds." I glared. She said, "Or I could go ahead and bring them in every four hours." Yes, that seems like an excellent idea. Why don't you do that?
And so the night went. We didn't get much sleep, but her pain was well-managed. Somewhere around 6am we all zonked out and were dead to the world until about 8:30. And while we slept the day nurse came back. I woke up to Kate beside me crying because she was more than an hour overdue for her dose. I buzzed for the nurse. No answer. I stomped down the hall, but she was nowhere. Finally the well-meaning tech comes in, takes one look at us, and offers to find another nurse to administer the medicine. When our nurse finally came, I asked to be discharged immediately. I knew I could do a better job administering meds at home than this lady could.
Overall our experience was fine, and there were even a couple of great folks we came across. (Kate even commented to me how the nice tech went above and beyond to make her comfortable.) However, I was thrilled to get out of there and back home.
For the rest of Friday and Saturday, Kate was in a bit of pain, and I kept her on a regular schedule with her medicines. She ate a lot of fried eggs and milk shakes, and she watched
Teen Beach Movie. A lot. (She stopped counting at eleven.) Although she didn't have any swelling in her mouth on Thursday, there was considerable swelling on Friday and Saturday. By Sunday morning it had disappeared. I woke up and heard her sweet voice singing and then asking for food. I smiled, and she said, "I am feeling like myself again." YAY!
After that she continually got better. We made her walk laps around the inside of the house every day, and over the course of about ten days she gradually went from bent over and hobbling to standing up straight and walking without a limp. After a week, Dr. N. cleared her to eat soft meats cut up small, and anything she didn't have to tear at with her front teeth. Crunchy, hard foods are still off limits.
As to the success of the surgery, everything looks great. It is still too soon to tell if the bone is growing or if it has failed, but there no reason to think that there is a problem. Hopefully, the worst is over, and it is all down hill from here.
Last, lots of people have asked me two specific questions:
1.
Is this Kate's last surgery? No, there will be at least
one more to repair the hole in her right eardrum and to do a lip revision to address some of the muscle issues going on. Hopefully it will help with her speech. I can't say if there will be more in the future, since it will be up to her when she is older if she wants any more revisions done. And of course, this is assuming no p-flaps, grafts, or anything else needed.
2.
Will Jack have this surgery done? Yes. Although his clefts in his alveolar ridge aren't visible without an x-ray, he does have bone missing on both sides of his upper jaw. In 4-5 years we will do this all over again with him, although probably with a different team of doctors. One of their doctors once said to me that you don't switch trains while they are in motion. In other words, stick with one team until the palate repairs are done. Because Kate's plastic surgeon had retired, we chose a different team for Jack. That team actually has two oral surgeons we can choose from. Now that Kate's palate repair is complete (fingers crossed), we will probably move her to that team as well, just to make our lives a little more simple. Dr. L will do Kate's lip revision, and probably Jack's bone grafts too.