So, it’s an interesting thing, being a special-needs parent. Sometimes, it means we get to witness the most inspiring moments, like seeing Will walk down the hospital hall today, determined to get back on his feet, despite the fact that he was clearly still in discomfort. Sometimes, it means we feel like those punching clowns people hit and hit and hit just to see them come back for more. This afternoon, for example, we found out that the formula Will needs to be on will cost $600-$700 a month, and insurance doesn’t cover it because, “You’d be feeding your child if he weren’t on formula.” Right. That makes perfect sense…if you don’t really stop and think about it. At all. Yeah. You can bet we’ll bounce back to that conversation.
In tough times like these, I try to remind myself of a David Allen quote (and I honestly have no idea who this dude is beyond the person who said this one thing one time that I really like*), “You can do anything, but not everything.” Damn right. This little marble of brilliance has gotten me through some really challenging moments. I have a tendency, as do so many people, to try to do everything and be everywhere for everyone, every day. And of course, this is an exercise in futility because it’s literally not possible in any way, shape, or form. Marty does it, too. Maybe it’s inherent to special-needs parents after a while. I don’t really know. Anyway, when Marty’s in full-speed mode, he’s fond of quoting Warren Zevon, who sang, “I’ll sleep when I’m dead.” What can I say? We’re different…and we’re alike.
Anyway, these are the rambling thought nuggets pinging around in my overloaded brain at the moment as I listen to a storm roll in while Will is taking his first bolus tube feed, watching Finding Nemo, and playing with two iPods simultaneously, including playing the Avett Brothers repeatedly. Talk about trying to do everything. He’s a pro.
He’s also a pro at school. I’m proud to say that Will’s teacher, who is such an incredible woman, came to visit this evening and brought Will some surprises, including cards from his buddies at school and….drumroll please….Will’s very first Littlewood Leader award! This is a, “Citizen of the Month” type of award that Will has never received in his five years at Littlewood. What a great surprise with fantastic timing! We were certainly due for some happy news after the tough day we had.
It started out ok. Will got to sleep through the night, as they were finally able to hold off on all the vitals checks. The nurse came in periodically to add formula to Will’s bag (it’s kind of an IV setup that runs through a feeding pump), and she pushed Motrin through the tube, all without waking Will. So that was great. First thing in the morning, we had a blood draw, which is much much much much much less horrible now that he has this PICC line so there are no needles involved. Did I mention it’s better? Seriously. Better.
Then it really started. Before Marty even arrived for the morning, and the man was here by 8:30, we were in a bit of a crisis. I had met with the doctor for our morning goal-setting and review. We had drawn labs, as I mentioned, and I had even found a moment to brush my teeth. But then the nurse rushed in with blood-drawing gear, telling me she needed to re-draw the morning’s labs. Will’s potassium came back at 6.3. That’s high. High is bad. If 3 is the low end of normal, and 5 is the high end of normal, that told my non-medical-person-brain that a 6.3 was as high-bad as a 2 or so is low-bad. Plus, she had that very determined nurse face on that lets you know in no uncertain terms, We have to deal with this right now.
Even better <sarcasm, really big sarcasm> was that we now also needed an EKG to check Will’s heart. That’s not something you want to see someone do to your 9-year-old. Seriously. Their little hearts are supposed to be perfect. So we’ll just say that was pretty much horrible but at least not painful. Around this time, the pediatrician’s office called for an update, so I had to hang up on Marty to fill them in, and then the Occupational Therapist (OT) came to get Will up and walking around the halls.
Then my friend Sharon showed up with coffee. That’s right. I handled that without coffee. No, I don’t know how. Marty had arrived by then, and we were waiting on the lab and EKG results while we ate Panera. It was such an oddly normal thing to do, eating bagels and eggs while waiting on a scary medical test. But that’s what we did. And then the Resident came in and told us Will’s potassium was totally normal. 3something. Completely not high and fine. Five minutes after the EKG I will probably get billed $1k for, but whatever. I’m trying really, really hard not to think about what 9 days in the hospital costs.
The Resident explained that potassium is very temperamental, and if blood isn’t tested quickly in the lab, it can do some sort of hoobadoo and get all funkified and then the potassium looks higher than it actually is and then you have a little heart attack thinking your kid has high potassium and ohmygosh now we’re going to be here another week and why do we need an EKG right this second is he going to die? He didn’t say all that last part. And I’m pretty sure he didn’t say, “hoobadoo,” but I honestly stopped processing information after he said Will was fine. Fuck you, potassium.
Also on the good news front, the throat biopsy taken during the upper endoscopy portion of Will’s surgery on Tuesday came back negative, which in doctor language means good, which sums up everything I need to know about medicine: it’s just some kind of Bizzaro World. But I digress. We also found out Will doesn’t have Cushing’s Syndrome, which I swear they scared the living daylights out of us with yesterday because some hormone levels were wonky and they really, really could have just run the tests without telling us Will might have a massively scary disease that probably wouldn’t kill him, but in my head already had. (And of course, yes, in reality I want to know everything that’s going on, but that was really stressful.) Also, when Marty and I used to watch, “House,” it was ALWAYS Cushing’s when there was no other answer. And Cushing’s looked BAD.
So in the midst of all this craziness, we had an OT evaluation and got a PT (physical therapy) referral due to Will’s depleted state. I’m sure her report sounded way more official than that, but basically, he’s lost a lot of muscle and needs strengthening. He’s walking like a hunched old man or a woman who just had a c-section, yet still trying to run, while walking on his heels and favoring his left side where the button (tube site) is, and he has lost weight. Today, after two days of continuous tube feeding, my 9-year-old weighed in at 22kg. For you normal people, that’s 48.5 pounds. Yes, I had to look it up after they weighed him to figure out the pounds. He’s below the 3rd percentile for height and weight. For comparison’s sake, the average boy Will’s age weighs over 61 pounds. Losing five pounds makes a huge difference when it’s 10% of your body weight.
What else … PT came by and made Will walk around some more; the pediatrics team came to do rounds and present to the Attending, who discussed medication changes and dosing and all that. Our wonderful, awesome, spectacular Tube Feeding Fairy came by too. Twice. And you know, I’m sure she has a boring title, but it’s late and I don’t feel like looking it up. She’s the nurse who teaches people how to manage g-tubes and tracheotomies and things like that at home. And she’s rad. She was followed up much later in the day by the DME people (that’s durable medical equipment for those of you lucky enough not to be familiar) who brought us our very own feeding pump and a mini IV stand to take home. Just what I always wanted. On the plus side, we have all our gear to go home with, so that’s a good start.
Somewhere in the middle of all of this Cathy Zenko from the Center for Autism and Related Disabilities (CARD) came back around for a long visit. She stayed long enough to get to meet everyone who has asked me how to improve the floor for kids on the spectrum, and she went off to do her own super fabulousness with them. She was already looking into this issue when Will was admitted, so now they have a bit of a case study to work from. We sat and I rambled on for ages about what does and doesn’t work from my layman’s perspective, and so, hopefully, in some small way, we are paying forward some of the kindness and grace that is coming our way. Our experiences may ultimately lead to improvements here at Shands Children’s Hospital that will help make this type of admission easier for kids with autism. It seems there is always a chance to pay it forward if you look for it.
It also seems there’s always something to be grateful for. Today, I’m grateful that Will is making gains. He showered today and walked the hall three times. He laughed. He smiled. He got to see Julia briefly when she arrived into town. He achieved his feeding goals for the day. He pooped some more. Hey, it’s a big deal. They don’t let you go home if you’re not pooping. Yay for poop.
I’m also so grateful for all of the loving support our friends and family are providing. I am comforted in the knowledge that people are lifting our family up in prayer all over the world. I’ll be honest. I go back and forth on religion and all that goes with it. But recently, I felt like G-d reappeared in my life. Or maybe I just started paying attention. Whatever the case, I am certain that we are not alone in this at any moment. My little beat up family of punching clowns won’t stay down for long. We’ll pop back up quickly. We’ve got this.
*Ok, also, it turns out David Allen is a dude who makes a living telling other people how to tell other people what to do in his branded $600 a day seminars while he’s in Ojai with his fourth wife. Not that I’m judging…But isn’t that trying to do anything AND everything? Now I’m confused. I need a new quote.