Wow. I’m not sure what happened to the last three days. They just flew by and were super busy. So I apologize for this update being so late. Let’s get caught up on everything that has gone on.
First up, Carson had his second surgery on Thursday to close his hernia. The doctors we able to close it most of the way, but not all the way. They are going to do one more surgery next week sometime to finish that up. What a relief to have one thing behind us and be moving forward.
While writing this update I got a phone call from the ENT specialist to talk about the tracheotomy that will need to be done on Carson because of his nasal airway being closed. I asked the doctor why they couldn’t do surgery and here’s what he said. He said that on a skull there are two openings in the bone shaped like triangles, and that about 1 cm behind that is where Carson’s airway is closed off. He said there are a lot of important structures there, like the brain and eyes that are very close to where they would need to operate. He said that he would not risk damaging those to free up his airway. In a few more years, there may be more room for them to operate on his nose and open it up. Also, in a few more years Carson will be less dependent on breathing through his nose.
We are very nervous about having the trache tube because it carries some big risks and limitations on the way he lives. With it, he couldn’t be left with anyone who didn’t know how to take care of it (clearing it, suctioning it, putting it back in if it comes out). He’s also more prone to infection because the air he breathes is not filtered by the nose hairs. There is also a 1% mortality rate associated with it because of how delicate it is. The doc told us that we’d likely need to have in home care for him from a respiratory therapist to watch him while he sleeps at night, or to have equipment that monitors him sleeping. We’re going to have some big changes ahead with this, but we’re trusting God that he knew what he was doing when he made Carson.
I was able to see the x-rays of Carson’s hands and feet. The nurse wasn’t able to tell me exactly what was going on because she didn’t know. She said that a plastic surgeon would come by sometime and let us know what they showed. From what I saw, all of his bones in his toes are completely separate! That means that we could have them separated someday for cosmetic purposes. As for his hands I could tell that some of his fingers are separate, but I couldn’t tell what is going on with his ring finger and middle finger. They are the ones that are most affected by the fusion. We’ll have to wait and see what the doc says.
Carson doesn’t have anything major happening this weekend, which is good because he needs a rest. They haven’t had to sedate him much lately so we’ve been able to see his beautiful eyes open and looking around. One thing to pray for is his muscle control on his eyes. Apert’s Syndrome causes weak eye muscles. I’ve seen one of his eyes react very slow and not in sync to his other eye. It’s scary because we just want him to have as normal of a life as possible, and this could be another big setback. We’re going to talk with the docs about it to see if there’s some therapy that can be done.
On the home side of things, Jorrey came on Wednesday to stay with us for a while and take care of Avery. What a huge blessing. When I lived at the camp in Montana she was only 8 years old, and now she’s almost 16! Where has the time gone? She is very mature for her age and helps out without even being asked. It is such a relief to have her here.
Heather’s mom left on Friday for Illinois. She was a big help in taking care of Avery while we were prisoners at the hospital. We are very thankful that she was here and took care of everything for us. It’s sad to have family leave, but we’ve got amazing support here from our church family. My mom (Steve’s mom) is coming on Monday to stay for a week. She’s going to be a big help for Heather because she still doesn’t feel good enough to drive to the hospital. We’re so happy to have all of the support that we’ve had.
One last thing in my giant book of updates. A nurse case manager from our insurance company called and said that Carson’s condition was flagged by the insurance company. They assigned her to us and she will be our advocate to the insurance company to get us coverage on things and answer all of our questions. She mentioned that because craniofacial reconstructive surgery is so specialized, that there are only a few places in the US that actually do those types of surgeries. Even though they are not in our insurance network, she said that insurance company understands that these surgeries need to be done and that they would be willing to cover the costs for them. We are very excited to know that our insurance company is even willing to work with us and help us.
A big thank you again for everyone who worked on and paid for our bedroom in the basement. It looks awesome and is more than I could have done on my own. Also thank you to those who have been doing my yard work and bringing us dinner. You have taken huge burdens off of us and allow us to focus on little Carson. We are so blessed to have such good friends! We love you guys.
Steve, Heather, Avery, and Carson