Things at some point have to calm down, right?
They have to get better. People can't live like this forever.
One day we are going to turn a corner, and it will all be up from there, right?
My mortal brain is silly.
Because that isn't life.
At least, it isn't ours.
Jayson caught a nasty virus last April that impacted him through June, as our last post said. Well, things did not suddenly get better. His symptoms, although improved, continued through July and his O2 needs and desaturations while asleep increased as time went on. For three months he had been sick. For three months we had been on high alert. For three months we did not know how the day would go, how sick he would be, what he would be able to do and when he would get better. We followed up with his GI doctor to see if we could figure out what was going on. He informed us just how bad this Adenovirus is. He told us it has killed kids as medically fragile as Jayson. He told us it was great Jayson was improving as much as he was. We were informed that his delayed motility, continued nausea, unstable bowel movements, and abdominal and rectal pain could be caused by a couple of things:
-Maybe he is still carrying the Adenovirus and being affected while he is still recovering
-Maybe the Adenovirus wreaked some havoc and caused some long-term GI damage
-Maybe he has developed some new GI conditions and problems
In order to find out which was the case he ordered a test to see if Jayson was still carrying the Adenovirus or caught another GI bug. He also set up an appointment to scope Jayson from the top down and bottom up while under anesthesia to look for abnormalities. A week later we got a phone call. It was the end of July and we couldn't believe it.... Jayson STILL had the Adenovirus in his system. Nearly FOUR MONTHS!! Jayson had been fighting this GI virus for nearly FOUR MONTHS. It was a relief to have an explanation and to know that he didn't likely develop any new major GI issues and his problems were all related to this virus. Yet, do you know how discouraging it is to have your child catch a common virus and be hospitalized a couple of times, go through so many setbacks and so much pain for four months and still not be recovering???? It really hit me just how fragile Jayson is. It may not always be that he's so fragile he's fighting for his life, but he is so fragile that a common illness can affect him so severely that it may take him months or years to recover, if at all. That can be really discouraging!!! And I was scared to let him go out and do things, because I didn't want him to catch another virus while he was still fighting this one so hard. And I was scared to think how the next virus might impact him! I really don't know if there are adequate words to describe this fear, frustration and anguish.
But it didn't stop here. There had to be more. No matter how much I wanted to just recover from a virus and sit tight for a while, there was more.
There were more rain clouds. Another storm. And we hadn't even seen the sun.
The last week of July we had another follow up doctor appointment with Jayson's craniofacial orthodontist. We see him every 6-12 months just to see how Jayson's mouth and teeth are doing with his unique structure. This visit is typically super quick and almost not even worth the trip up there because there is so little to discuss. But this time was different. Our doctor read through Jayson's notes, asked a lot of questions and then did a thorough exam. He then used a lot of words that I didn't understand. I'm not sure if it was that the words were new to me or if it was because I was so shocked from the conversation that I shut down. He explained that in his exam (he used a mirror to look down Jayson's throat and airway) he noticed Jayson's airway was very narrow. He explained that most children with craniofacial syndromes can have small airways that get incredibly narrow. But Jayson's airway was completely closed off at the time of his exam, while awake. He was concerned about what his airway might look like while asleep. It seemed Jayson's airway was so narrow it periodically closes off. He asked if Jayson had been desatting. He had. While awake or asleep? Both. His O2 had been low lately, even while awake. He had been desatting while on bipap and 5 Liters of O2, and our concentrator doesn't go any higher. He explained Jayson's palate was very narrow and how it impacted his airway and ability to breathe. He said that it would be less concerning if Jayson could breathe well out of his nose, but he can't. He described Jayson's nasal passages as being incredibly narrow and he was uncertain how well Jayson was able to use them to breathe. He then proceeded to tell us about two invasive surgeries he would recommend. Distraction surgeries. With surgerical cuts, surgical breaks in the jaw and facial bones, with hardware and the parents adjusting them. We were talking about another distraction surgery before our family had fully recovered emotionally from the last. I'm pretty sure I started shaking and my brain kind of shut down. I couldn't believe we were having this discussion. I saw the doctor patiently trying to explain the procedures and demonstrating how he would make cuts on my child's face and reconstruct his beautiful, yet imperfect, features. I felt like I was having an out of body experience. This had to have been a dream. It came out of nowhere. This can't be happening.
The following days and weeks were rough as I went in and out of phases of trying to process this information and being in denial. To be able to cope, I told myself that this was only one doctor's opinion. He has 19 of them, after all. How could his palate and nasal passages and airway be so narrow and dangerously affecting his breathing yet all of the 18 doctors and specialists had not noticed? I convinced myself that this must have been a mistake. Jayson was fine. We had a pulmonology and ENT appointment coming up where this would be discussed. We would be told everything is okay.... right?
We saw a new pulmonologist who works in our hospital and in our network. Our last one we weren't crazy about and it made it very difficult for our doctors to communicate with her since she wasn't in our hospital's network. We liked our new pulmonologist but the appointment was very much a first-time entry appointment. It was all about getting to know Jayson, his background and history, and very little about recommended treatment at this time. He was messaged by the craniofacial orthondontist about his concerns, and so he told us we should get a new sleep study to look at the most recent data before making decisions about surgery. We got one scheduled for September.
Today we saw our ENT. The same ENT we have seen since Jayson was 2 months old. The ENT who has seen his airway dozens of times and scoped him in clinic, in the hospital and in the OR. This surely would be the doctor to trust. I was very nervous for our appointment today for several reasons. I knew we would be likely getting clarification about Jayson's airway and craniofacial concerns; I also was worried this might lead to Jayson getting scoped in his office, which is traumatizing. Our ENT entered the room and knew right away why we were there. He had received the messages from the craniofacial orthodontist and seemed a little surprised by them. After some discussion, he decided to examine Jayson. He examined his nasal passages and his mouth, throat and airway. He said he was able to see well enough that it didn't constitute a scope in office, thank goodness, although holding Jayson down long enough for this thorough exam was still quite traumatic for him. Unfortunately, he was surprised to learn that Jayson's nasal passages where incredibly narrow. And his palate was "impressively" narrow which was likely impacting his airway and breathing. It was true. Everything the craniofacial orthodontist said was true. We conversed for a while about what this means, what our next steps are and where this might lead us. I held it together quite well for this entire conversation. We decided that Jayson's nasal passages and airway needed to be scoped under anesthesia to understand truly how this is impacting his breathing, particularly while asleep. If it's difficult to get a scope down, we will know they are too dangerously narrow and he will need intervention. Our ENT also mentioned we may want more CT scans of Jayson's nose and palate area, to learn more about their structure. Also, they may or may not want information from the upcoming sleep study to play into the decision. I was asked a couple of times what I thought they should do or what I thought about surgery. I like to be included in decisions, but not in these. I will never choose to cut open or harm my son. NEVER. Don't ask me to. I asked him to please collaboratively work with our other doctors to make the decisions about tests they do, how to proceed with the sleep study and if they need to treat these conditions. Mike and I agree that we only want intervention if it will improve Jayson's breathing or keep him safe while breathing or while sick. If it won't change anything, it's not worth doing. He agreed.
So now we wait.... We wait for more tests.... We wait for discussions.... We wait for decisions to be made. And I wait to hear whether or not my son will be going through more pain and suffering in order to perform simple tasks we all take for granted such as BREATHING. It's not fair. It's not fair at all.
Hours later now that I sit here processing all that is happening, I'm having a hard time keeping it together. Why? Why do things not ever get easier for my sweet boy? Why must his life be so hard and painful? Why is it constantly one thing after another? I keep waiting for things to get calm, yet they never do. Will we not ever get to that point of stability and calm??? My heart is tired, so very tired.
I'm also having unrighteous feelings of anger. Yes, I've had these before. How is it that my son has 19 doctors and specialists, yet we are just NOW at nearly the age of five finding his narrow palate, nasal passages and airway??? He was born with a craniofacial syndrome. He was born with these features that are common with any craniofacial syndrome. I know ours doesn't have a name, but should it have to??? He was not examined recently using invasive means. He was simply looked at closely. Has he not been looked at this closely before??? We knew my son had a craniofacial syndrome, yet we never suspected craniosynostosis until he was almost three years old. And now that he's almost five, my son with a craniofacial syndrome is just now having his palate and upper airway checked out? Really? Maybe I'm too hard on our doctors. Maybe I don't understand medicine or the system. But I do know we can do better. I do know my son deserves better. How many more things are we missing? How many more surprises will our family experience? It's exhausting to think about. Again, my heart is tired.
So here we are. Trying to process new information and come to grips with the fact our son may be in for more craniofacial surgeries and sooner rather than later. After doing a little research, I learned that the first surgery we are discussing is not as awful as I originally pictured. The distractors are internal. They don't come out of his face or head like his previous surgery. They do break his jaw in several places which sounds horrendous, but the risks of infection is less and I don't believe there are open wounds for us to care for on a daily basis. The SARPE looks something like this:
There is another surgery the doctors mentioned involving the mid-face, cutting at the cheeks, bringing things forward and opening the nasal passages, but I think that one would be done after the SARPE if necessary.
We will have more tests and procedures in the upcoming weeks as we decide as a team what is best for Jayson. We would appreciate and welcome any thoughts, love, support or prayers sent Little J's way. He is a warrior. He never gives up, even when I want to. He perseveres and takes on everything... with a smile on his face. I know we will get through all of this and anything else that comes our way. I just wish he didn't have to be so strong.
We have recently had a big batch of good news come our way, which is sooooo needed in our lives right now!! I hope to blog about it and share it soon! A new {possible} neurological diagnosis and a TREATMENT which seems to be working may change things big time for our family. Little J deserves a change! He deserves to have things be a tiny bit easier for him! I truly hope with all of my heart this is the break he so deserves.
This boy is my hero. He fights a lot of battles. But he wins, every time. I don't expect the result of any of this to be any different. He will always win. Fight on, warrior boy. You've got an army behind you!!
