A balancing act

Elliot hasn't had an appointment at Vanderbilt since November 4th, and we aren't scheduled again for anything at Vanderbilt until the end of January. We have never even gone a month without a trip to Vanderbilt since he was born. You'd think there'd be a sense of calm and peace, but I feel like my nervous system is still just ramped up and ready to go. We've been go, go, go for months and the slower pace almost feels more excruciating to me.

Appointments at home have been steady, twice weekly for feeding therapy and one to two times per week for speech therapy. Early intervention for speech has been a blessing, I'm so thankful for a program that meets us where we are instead of requiring us to drive somewhere and spent more time in a clinical office.

We are still making slow progress with feeding therapy, and if I'm honest, it's incredibly frustrating. I want so much for it to just click for Elliot, but I'm reaching the point that I just don't think that's our path. I've reached out to the MCAP/M-CM support group on Facebook to see if any other parents have recommendations for what helped their kiddo if they had feeding issues. Most recommended discussing with ENT which we have done before. Last year we were going to have his ENT perform the supraglottoplasty to alleviate his symptoms of laryngomalacia and to do a full airway scope. Just before this was scheduled we found out about the possible tumor and our ENT plans got derailed. Fast forward to surgery day for adrenalectomy, the ENT was supposed to do the airway scope but day of told us he didn't feel it was necessary as Elliot's laryngomalacia seemed to be mild. I wish we would have fought that decision but we were anxious, scared parents and to be fair we had also stated we felt the laryngomalacia was improving due to decreased breathing issues.

Fast forward to this week- I've been trying to do a little more research to figure out ways we can address Elliot's feeding difficulties. I decided to follow up with the ENT again and asked about scheduling the airway scope and also asked if he felt Elliot would benefit from a craniofacial consult. He felt that the craniofacial team wouldn't recommend any treatment for Elliot's case, my concern was his high/narrow palate. However, he was agreeable with moving forward with the airway scope.

Here comes the balancing act- we were originally scheduled for Elliot to have his post-operative spinal MRI the last week of December since that was close to 3 months from surgery and we'd get the benefit of it being free due to already meeting our deductible. I hate that I even have the thought of basing Elliot's treatment schedule off of money. But the reality is we have thousands in medical debt and any bit we can save is helpful. You might ask why it matters when Elliot's spinal MRI is- well because of his age, all of Elliot's MRIs are done under sedation. In the last 12 months, Elliot has been under general anesthesia 4 times. Both the MRI and the airway scope require that he go under anesthesia. So, the best case scenario is for us coordinate them both on the same day to reduce his anesthetic exposure. The results of studies on early childhood exposure to anesthetics suggest an increase in neurodevelopmental impairment- "childhood exposure to general anesthesia was associated with statistically significantly more behavioral problems and neurodevelopmental disorder diagnoses, as well as deficits in executive function, nonverbal reasoning, motor function, and, to a lesser extent, language, general development, and academics. Cognition score differences, while statistically significant, had the weakest association."

We know that due to Elliot's diagnosis, we likely are looking at many more anesthetic events in his childhood- at one point do we say the risk isn't worth it? Some days I feel like I agonize over whether we are doing too much or not enough. Which decision was right and which one was wrong. But for this time, the decision seemed obvious, push back the MRI to coordinate with ENT. Both are now scheduled for January 24th.

I have a strong feeling that pushing for the airway scope was necessary, especially after talking with other MCAP families. I feel like it may give us the missing piece of information that could help formulate a plan to get Elliot to eat something other than formula. I know he cannot stay on formula forever, and though I don't have a specific timeline for when he needs to be eating I do feel like there's a clock ticking in my head.

For most children with laryngomalacia, symptoms resolve by 18 months. Elliot is still a noisy breather, snores significantly loud for his age, and struggles with coordinating swallowing even with liquids. I feel like we should have moved forward with the supraglottoplasty to treat the laryngomalacia sooner. Several MCAP families felt their child's eating improved after this procedure. I'm hoping the airway scope provides us with some insight on whether the supraglottoplasty is the right decision.

I think all the extra time I've had from not driving back and forth to Vanderbilt or thinking about making my plan for these trips, has allowed me to have enough time to ruminate on everything. I try to stay positive and recognize that despite this big diagnosis we are facing, Elliot really is a pretty healthy kid. And I am grateful that the affects of MCAP for him have been much milder than it could be. But despite all that, today I just feel frustrated. Frustrated about the diagnosis, frustrated with having to balance medical decisions with finances, and frustrated that I can't fix this. I've always felt the need to maintain a certain level of control in my life, and feel like I have very little control with Elliot's health.

Sorry for my ramblings today, if you're reading. I know this feeling will pass and I'll be able to experience gratitude and peace again, but I'm trying to also sit with the negative feelings from time to time. So, here's to showing up authentic today.

Here's my joy for today:

Love you sweet boy!