(are any of you wondering how long i’ll keep up with the “be” titles? Cause i am. wondering that about myself i mean. i give it a week tops. over/under 1.)
So anyways – todays post is titled that simply because that is who we were seeing today at CHW. Special needs/complex care. Typically the level of “help” we get from this team is logistic at best (meaning they help make sure that all the other doctors on kendall’s team don’t come up with conflicting ideas – like when GI wants to start overgrowth antibiotics and ID tells me that that will mutate her gut flora – complex care helps mediate between the ideas and asks us what WE want to do for kendall and helps us make that decision.) The doctor who we see has been a bit “overworked” and as such has not been the best advocate for Kendall (in my opinion) at times – but today he definitely redeemed himself. Well, at least a little bit.
We spent a lot of the appointment kind of covering old ground (part of his lack of input on kendall’s case the past year was because he was the ONLY doctor in the program, and as such was just too darn busy to remember her/us most of the time I think!) – like exactly which of her meds/diagnoses are still relevant. or the fact that his big brainstorm of the day was that she “seems to have a lot of dysautonomia”. my jaw hit the floor. I wanted to yell “welcome back to the page the rest of us have been on for a few years! how was your coma!?!?!” But I refrained. (because i was trying to be CALM, remember?) Anyways. He may have meant it in more of a diagnostic/genetic way vs the typical way its used as a catchall diagnosis for “all the crazy random crap that kendall’s body pulls which keeps us on our toes”. But he wants to do some more digging/theorizing/testing on that front. And more than likely start some medications to help get some of her “issues” under control. We have tried to hold out on starting meds that try to “control” systems that are just wacky without rhyme or reason, because we don’t want to get into a “chasing our tails” type of pattern.
I’ll try to explain that a little more. For instance, Kendall’s heartrates will often be very erratic. She will bounce literally all over the map all nite long – and yet be perfectly “healthy”. Her system just doesn’t have good regulatory mechanisms because the energy required to keep things “stable” is often being diverted elsewhere. The heartrates which used to scare us we now just watch with one eyebrow cocked, waiting to see if it turns into a “real” problem, or if its just a “crazy nite”. For the most part her heart itself is “ok”, so we have come to an understanding that the issues we see are just an inability of her autonomic system to regulate itself, aka “dysautonomia”. (and for those whose children suffer from truly debilitating dysautonomia, please know that I am not trying to trivialize this diagnosis, i’m simply trying to break it down to simplistic terms!) there are some VERY severe forms of dysautonomia, and there are also some very mild forms of it. Kendall probably falls somewhere in the middle of the spectrum, and some days i’d say more towards the severe side with some of the reactions we have seen to seemingly innocuous situations. The problem with medicating some of the issues that dysautonomia affects is that by, say, trying to control her heartrate fluctuations, we could bottom out her blood pressure. By trying to regulate her temperature control center, we could throw her thyroid out of whack.
This is part of the frustrating cycle that so many mito families find themselves in. Where is the line at which you treat issues and risk creating new ones? And of course, i’m not saying that starting kendall on a new medication WOULD create more issues – but for us, it’s just been one thing we could do, or attempt to control rather – limiting her medications. I KNOW that so many people probably use “autonomic regulators” with very few bad side effects, and in fact most kiddos i know of who take them actually have great results from them. But – its still not something to just jump into. Kendall has been referred to a couple different dysautonomia centers, and meds have been brought up a few times – but it just hasn’t seemed like the right choice at the time for plethora reasons.
A new dysautonomia expert was recently hired by milwaukee that dr G (complex care) wants kendall to be seen by, so we will wait to see what she has to say before really jumping into things. I am excited by the fact that she might be able to come up with some good ideas to help get control of some of the “loose ends” we deal with in regard to Kendall’s “healthy days”. None of this info about “dysautonomia” is new really – it’s more my shock that THIS doctor, who tends to blow off ALL of our concerns about kendall’s issues, finally saw today how even on a GREAT DAY, we still have a LOT to deal with, and a lot of moving parts required to KEEP her looking so great.
Other things that came out of this visit is that we will be getting a few things switched over to IV meds in order to alleviate some of her gut pain ( having to push in a large quantity of meds all at once into her J-tube causes a LOT of issues for her lately – we used to be able to get her meds in no problem. I’m still hopeful that its just still the aftereffects of whatever crazy virus Kaylen is fighting, but i am relieved that dr G realized on his own that getting some of the “easy” ones into her TPN would be a big load off! And the last thing is that we definitely need a LOT of followup on the pee issues/lack thereof. i had hoped we could just wave some magic wand at her bladder and there would be a good quick easy fix. No such luck. We will at least be hopefully avoiding further ER trips for a simple cath, but this will involve getting home cath trained and starting on the intermittent cath schedule that the urologist suggested last year. And we have to follow up with him sooner than later. And she will need MORE horrific testing to see where the problem is. Insert a swear word here. I still hold out hope that both her bladder AND her gut will just wake up on their own before i have to actually act on any of this stuff.
I’m totally losing my train of thought here so i’ll wrap it up.
Overall – it was a good visit. We are moving forward, not conceding anything just yet, still hopeful for many many many more great days for KQ! And yes we did survive having all four girls plus me plus the doctor plus our nurse practitioner in one teeny exam room for an hour and a half. Barely. momma needs a xanax now.
Happy January 3rd! Hope everyone is staying warm!