In the debut column of Busy Being Brooks, I mentioned that Brooks's condition leads to him being "medically complex". I now have the perfect example of this and how it happened in our family; how one issue and one Doctor led to another and then another and then another, and how this ends up leaving me feeling like I'm alone in the middle of the world.
Back in the spring, our Allergist suggested that we look at other reasons outside of the Eosinophilic Esophagitis (EoE) that may be causing Brooks's failure to thrive and inability to gain weight. She started on a series of questions about how he sleeps and how well rested he is. He sleeps butt up, head down by the way. He doesn't snore, but he tosses a lot. He's never been a great sleeper and I hadn't really ever considered it a larger issue. That conversation ended in, "Let's see an ENT. Make sure his tonsils aren't an issue - maybe he's working too hard at night, and not gaining enough because of it.". That made sense as a possibility, and so off we went to the ENT.
ENT says tonsils are "on the larger side", but not something that would warrant removal. Adenoids looked fine, completely normal. None the less, ENT sends us for a sleep study. Because let's throw stuff at the wall and see what sticks, right?
The sleep study results were eye-opening. He suffers from all types of apnea, and stops breathing (for more than 10 seconds at a time) up to nine times an hour. That was scary to hear and not something I had ever in my wildest dreams imagined was going on. ENT says that regardless of tonsil size, now they need to come out. It's the only treatment available for moderate apnea in someone his age. CPAP isn't an option until age five.
From there we went on a wild goose chase to see if we could coordinate this now urgent tonsil and adenoid removal with his next endoscopy, which is how we monitor his EoE. He's due for this next endoscopy now, basically. Unfortunately after much work and much cursing, we were not able to coordinate the procedures. (It's very hard to coordinate specialties for non palliative care kids. Just one nugget I've picked up.) So, on the advice of two ENTs, the Neurologist, and our primary Pediatrician, we decided to move forward on the tonsillectomy and shelve the endoscopy, for now.
Surgery was Monday, and we're in the thick of recovery now. Overall he's doing really, really well although I wish he'd drink more. An on-going issue seems to be how his lungs react to any procedure that involves putting something down his throat - which is all of the procedures he's had. He comes out of recovery sounding croupy, and sometimes it gets bad enough to warrant steroids. This was one of those times. We all know how scary sounding croup can be. Imagine it the day of surgery. Terrible. Thankfully this time we were in-patient when it happened, so it was an easy (and quick) fix.
And that brings us current. Our biggest concern now is - did the surgery work? Will this fix his apnea and help him gain weight? We didn't exactly get the warm, fuzzy, hopeful feeling from the surgeon who told us his tonsils were smaller than they originally thought. We won't know until we do a repeat sleep study. And unfortunately, if he fails again we're just out of options on that front.
I said this once before but it bears repeating a few times... I know it sounds like a lot and it is - but it's also peanuts compared to what other families have to go through. It's all relative, all the time. I honestly don't know that I'd be able to manage any of this on my own, and I'm so incredibly grateful for our amazing support system. Friends, family, neighbors have brought over food, organized a meal train, sent cards, and flowers, and incredible edible bouquets. One of my friends, and fellow special needs warrior Mom, even has me hooked up with our medical food shake mix while we (still) wait on insurance approval.
There are always tons of offers of help and I know whatever we need, we will have.
And yet, I still feel so alone.
That's the paradox of this life, I think. We have all of these people around us who love us and want to help, but sometimes we can't get closer to any of them because of our current circumstances. For me, I simply don't have the resources available to further my own relationships at this point in my life, and it weighs on me. A lot. Between appointments, phone calls, therapies, groups, more appointments, chasing insurance... not only don't I have the time, I more often than not don't have the energy. My brain feels just slightly shy of fried All. The. Time. I'm tired and groggy and cranky and snarky. I try not to be, but this is me, NOT at my best right now. Not pretty.
So what do we do? What do I do? I'm not segueing here, I'm truly asking. What can we do to nurture ourselves through our relationships when we're in the trenches? Like really, really in the trenches? How do we maintain the friendships we have, when we can barely make time to shower most days? This isn't just a special needs problem, either. A lot of times it's a parenthood in general problem. I made the It Takes A Village group to hopefully foster some sense of community for anyone who is interested, but that's still on-line and not face to face actual human interaction. There has to be more. So how do YOU cope?
If you've got the answer, or any tips at all, throw them at me. Comment below, join our facebook group, or email me. I'm all ears.
Xo
Andrea
