It's been a minute since I blogged about what it's like when Hayden needs some sort of emergent medical care. There was an ankle incident I shared about fifteen years ago if anyone cares to revisit that memory, which was also during Fragile X Awareness Month.
Fragile X Awareness Month doesn't go away, neither does fragile x, so here's a dose of July awareneXs.
Yesterday morning Hayden left his room after he woke up, which he typically doesn't do because he prefers to wait for one of us to get him or we end up needing to anyway, to help him wake up. He approached me still in PJs but of course with his baseball hat on, faux glasses on his face, & wallet in hand. He may have also had his stethoscope. He was on his way to the bathroom but went up to me to show me his finger (I don't recall what he said). His fingertip was red, visibly swollen, the cuticle line was green, & right below that his skin looked almost the same white as blood flow being cut off.
I'm going to fast-forward through some of the sequence of events that morning but somehow he got dressed & ate breakfast. However, I knew he could not attend program because that finger needed to be tended to. I will say that having a little emergency is enough to throw him off, let alone when dealing with said emergency also means we must stray from our usual schedule/ routine. That will make it worse.
After approximately two & a half hours of me unsuccessfully trying to tend to his finger myself, on & off because of his tactile defensiveness, we finally managed to get him to follow through with leaving the house. Which we had also been trying to do-- just to get him to choose one or the other, either accept my help or let us take you somewhere to get help. At one point things escalated to Hayden beginning to grabbing & throwing whatever he could off of the kitchen table. Last time that happened was the February incident when I got a laptop to my eye, but thank goodness Hayden did not get heightened to that degree this time. Plus Dan was home, which helped prevent the situation from getting to that point.
We opted for a local urgent care where they miraculously/ successfully were able to complete a TB skin test last month, that Hayden needed prior to starting his new program. Also this solved the issue of him not currently having a local Dr because his (newer to us) PCP who is definitely not nearby, currently manages his medication regimen. In the past, he had a fragile x specialist for the latter but the most recent one relocated to the other side of the country (& the one before that retired).
So by the time of the urgent care visit, we were about 3 hours into this ordeal. The doctor there told us that it was an infection & it needed to be drained but they couldn't do that there (I think because they didn't have the staff & she knew from experience we need enough hands on deck to accomplish something like that with Hayden). She said our best bet was to go to an ER. The two closest options are similar in distance from where we were-- one maybe a couple or few minutes further-- but Dan opted for the slightly closer one mainly because we know from experience the wait time at the other one is typically not good. We had never been to the other one before but it's owned by the same company as the one we are familiar with. Just a side note, it was impressive not only that Hayden answered some of the nurse's questions at the urgent care but how he answered-- he communicated well. And not that I need a reminder, but when I re-read that ankle blog post from so long ago his speech progression was even more apparent.
When Dan, Hayden, Grover, & I arrived at the ER it was not busy. Check-in was easy. The woman at the desk was very kind & seemed to understand Hayden's unique needs. She even gave Grover his own visitor badge. The wait to be called into the first room was relatively quick. The next woman was also very kind, asked the right questions, seemed receptive & accommodating. I believe there was also another nurse in that first room. The wait time in the room where Hayden was assigned an ER bed is where things really slowed.
Start to finish took about 3 hours. The majority of the wait time was until someone came in the room to assist him. The rest of the wait time was mostly for the numbing agent to kick-in as well as the calming agents (plural) to also kick-in. This included being pinned down by about half a dozen adults (it's a blur) & one of the nurses giving him a needle to his thigh.
He was able to walk (albeit unsteadily) when he was discharged. He slept the rest of the day & well into the evening until I finally got him to wake to shower & eat something. He went back to bed probably less than two hours after that.
After-care includes soaking the finger at least a couple times a day, ointment application after, & dosing an oral antibiotic 3 times daily. Antibiotic for Hayden must be a tablet that is safe to crush or a capsule that can be opened. He will not eat a chewable, or drink a liquid, or certainly never swallow a pill. He needs a follow-up tomorrow to check that it's healing. Let's review said after-care: if we can convince Hayden to put his finger in warm water, he will not keep it there long enough for it to soak. Ointment application & re-bandaging with a little gauge will be hit or miss. Three times daily dosing of the oral med-- let alone for 5 days-- is going to take a mini-miracle. As it is I have to hide his crushed meds in his daily breakfast & the horse capsule antibiotics have a lot of powder in them. Nothing else that he takes in the morning is re-dosed during the day, but timing of other meals is less predictable because that always depends on how long since he last ate... vs it's such & such a specific time so he's ready to eat. Doesn't work that way in our fragile x world.
Any problem that needs to be tended to, is only the beginning of the problem. An injury itself is just the preface. So for this particular awareneXs post I raise Hayden's infected middle finger to fragile x.
Although... I do place my hand to my heart for the rare healthcare providers who bother to truly listen, have an appropriate sense of urgency, & are receptive to doing everything we can to safely assist Hayden together. Thank you. Thank you.
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