I apologize for the lack of info. It really has been a long few days. As a result, you get to read a very long post. :)
We saw the orthodontist which was...entertaining. He is making a mold of Will's mouth and a splint that will help to wire Will's jaw back together after surgery. He is obviously a pediatric orthodontist. When he finished with Will, he said, "Think I have all the pictures I need of your toothies." Will was amused.
We then killed an hour and a half then headed to the appointment with the plastic surgeon...where we waited an additional two hours past our appointment time. Fortunately, he was totally worth the wait. He was so kind to Will. Even as he explained the horrid details of what is to come, he did it with a gentleness that was very appreciated. The full scope is truly just ugly. Basically his lower jaw will be split down the middle (including his lip), his tongue will be split, and he will have a tracheostomy. The trach had been removed from the plan, but Dr. Bilmeier apologized and stated that it was indeed necessary.
After that appointment, I looked at Will and said, "I wish we could pretend it all away." He replied, "I already do that." Compartmentalization. I am a pro at that, and apparently so is he. So, we pretended it away and then went for food and retail therapy. :)
Will has been wanting a Cincinnati Reds hoody, so while here, I had hoped to find him one. Well, we went to a bunch of stores. You can find men's medium through xxl, but you cannot find a small. Apparently they don't make a small. So we looked for a youth xl. That is literally the only size we could not find. So, the internet quest begins...
Thursday we had the day off, so I let Will sleep til he awakened (which was 1 pm!!) and then we headed to find Will a coat. We bought him a coat last December, and I bought it a size larger than he needed so he would have it this year. He brought it with him...but when he put it on, his wrists are forearms were just a little too visible. So we obviously need a coat, and taking him right after surgery is simply not kind. So we went shopping...again...then headed to Whole Foods for groceries. We dropped those off and I made the daily call to the Ronald McDonald House and discovered that we have a room! Cool! But we have to leave immediately to register in time. Not so cool. It is rush hour and will take more than 30 minutes to get there.
Today was the anesthesia pre-op appointment. I was able to voice my concerns regarding Will's medications and food issues post-op, so she did include that in her email to the surgeons involved. She also recommended that we make an appointment with Dr. Putnam, a gastroenterologist and guru of EE. So, I called clinical concierge and made my request for a miraculous appointment in the near future. She is actually hoping to get Will seen while he is inpatient. No promises, but she is trying. That would be mimraculous because his appointments are apparently a treasured commodity. :)
Somehow Mimi, Dr. Crone's assistant, received a call that I was unhappy with anesthesia. Interesting, because I am not...I am unhappy with my unanswered questions regarding food and meds post-op, but I am not unhappy with anesthesia. So I told Mimi my concerns and she kindly patted me on the head and told me that all will be fine. Um, if you know me, a head pat is so not going to do it. :)
I recognize that I can be a full fledged mama bear regarding William. But when you have all of these different specialists focusing on their own specialty and no one looking at the big picture, then someone has to see that big picture. Fine. Will will have surgery, be deconstructed, then reconstructed. What happens when he doesn't receive his bp meds because he can't take them orally? Seriously, which ones of these can be given IV? Someone needs to be considering the options. The consequences of NOT considering that little detail are significant. So please do not pat me on the head. My cub is in danger and you do not want to be the one standing in the way of him getting what he needs. :)
I think she finally understood that I am not being a pain in the neck just cause I can. I really have valid concerns and they need to be addressed. They are surgeons, not physicians who know how to handle mito and autonomic dysfunction. I don't expect them to understand it all. But I do expect them to ensure that their patient is receiving the meds and services necessary for his well being. So, I hopefully gave them the nudge toward the bigger picture and can put my claws away...at least I hope so.