Sometimes, I feel like a frog that’s lost a leg. A frog can survive with three legs even if it’s used to four; it just needs to learn how to hop and move and live within its new parameters, its new normal. At every major challenge in life, it seems to go this way. I get crushed a bit. I lose something precious or gain something unexpected or unwanted or am faced with a big unknown. I have my moments of breakdown. And then I put on my big-girl panties and get on with it. Because really, what other choice is there?
Will is very much the same. He has been knocked down by things. He’s been injured and sick and beaten down by his own little body time and again. Infections, injuries, self-inflicted injuries, the stress of maintaining his autism- and OCD-fueled world… it’s all HARD. It’s WORK being Will. But Will is a fighter. He pulls himself up by his bootstraps and moves on. Every time. Every day. He’s the bravest person I know. He’s my hero.
So, we’ve been in the hospital a week now, little (partial) family of three-legged frogs that we are, and we have adjusted to our new (very ab-) normal of hospital life. We’re hoping this never feels totally normal and we head home soon. On Tuesday, surgery day, they predicted we would go home Friday, but now, Thursday, they’re saying Saturday, and I’ve learned that, “probably Saturday,” more likely means Sunday or Monday. Whenever it is, it is. We’re here as long as Will needs to be here. It’s as simple as that.
Once we get home, though, we will most definitely have to learn to hop again, because there is nothing normal about any of this stuff. Tube feeding is much more complicated than I thought. I figured we open a port, plug in the tube, syringe the food, close the port. That’s not hard, right? Wrong. Way wrong. Tube feeding requires multiple steps, constant cleaning of both the button (the port site on his abdomen) and all the stuff that connects to it. There’s a lot of “flushing” of things and clamping and washing and measuring and charging and priming and … and … and…
Plus, we haven’t even gotten to the logistics of HOW we’re going to manage this whole thing. “Bolus or continuous?” they all want to know. Marty and I are pretty much saying, “Bolus or continuous WHAT?” and “Aren’t you guys supposed to tell us?” It feels a bit like when you get home with your first baby, have your first (really horrible) night, and you look at each other and say, “Now what?” There’s no real instruction manual, yet you can’t just wing it, either. So this is a time of asking for help and demonstrations and then more help, more demonstrations, and over and over until we get all of this information through our very sleep-deprived, overloaded brains.
It’s also a time of staunch advocacy, because although the wonderful folks at Shands Children’s Hospital are pediatric experts, they’re generally not autism experts. And surprising as it seems, a good percentage of the medical personnel don’t seem to have much experience with kids on the spectrum. Doctors? Yes. But some of the nurses and assistants really have no idea how to accommodate Will. This has led to some really interesting conversations with folks from the Child Life team, the nurse managers, the social worker, and some other folks. I think we’ve been able to pay it forward a little by walking these receptive professionals through what does and doesn’t work about their current setup when it comes to a kid with autism, specifically one with real sensory challenges. I’m very hopeful that some of what we’ve discussed will help make this journey a little easier for the next family like ours.
Beyond all the advocacy, case management, phone calls, coordination, service requests, and meetings with doctors, nurses, social support people, tube feeding specialists, nutritionists, med students, and on and on, we’ve also, and primarily, been focused on Will. He has been on a continuous feed of this special formula since yesterday afternoon. It looks like milky water and can provide all the nutrients he needs in a given day. It’s meant to replace or supplement oral feedings. So yesterday and most of today, they had him on that and an IV, with nothing by mouth. The goal was to get his system acclimated to receiving nutrients by tube and to ensure that his tube site didn’t get overly stressed in the first 48 hours of healing.
We had a small procedure this afternoon. Will had to have his PICC line re-bandaged, and while that doesn’t sound like a big thing, it really, really is. Our poor little guy was held down by four adults, Marty and me included, while a nurse removed all his old bandaging and replaced it. This stuff is meant to last several days, so it’s all adhesive-d onto his skin, and that was … unpleasant. But he did walk down the hall for the first time, and that was scary yet fantastic. He’s weak in the knees and unsteady. For those of you who know Will, you know it’s like seeing a bull in a tutu.
By mid-afternoon, Will was really hungry and was demanding pretzels. He got out of bed (insert image of me chasing him around the bed with an IV stand so he doesn’t pull out all his gear) and wobbled over to a chair where he sat down. I thought this was pretty awesome until he took my hand and gestured toward a bag of his pretzels, which I was absolutely not allowed to give him. So we talked about it, and then he proceeded to get up and reach for the pretzels. Another talk. Then he took my iPad, opened the photos app, found a picture of himself eating pretzels, and put my finger on the pretzels. Like, how many more ways do I have to tell you, Mom? I want pretzels. Now.
Then, at the same time, Will was in pain, and he curled up in my lap, something he hasn’t done in ages, burying his head in my chest. He was upset and tired and sore. I had the nurse get Will some Motrin and page the doctor. We talked about increasing the tube feed or adding solid food, discussing the options. He went to discuss it all with the Attending, who brought Peds Surgery into the conversation. Ultimately, our favorite neighborhood med student (seriously, guy is awesome) came by with the good news: Let Him Eat (but not cake).
Will immediately ate a bowl of pretzels mixed with apple chips and drank a big cup of water. He smiled. He laughed. He was HAPPY. And it was AWESOME. Not long after that, Will got up and went to the bathroom. I won’t get all detailed here, but those of you who have potty trained a child and experienced that first poop on the potty will have some idea of the happy dance Marty and I did. That poop gets us one step closer to going home.
With Will eating and drinking, he was allowed to get off of his IV. So now he’s only hooked up to the g-tube feeding pump, as they will keep pushing the formula that way all night. Hopefully, no one will bother him all night and they’ll just let him rest. I’ve been asking absolutely everyone to put it in their notes that no one should wake Will unless absolutely necessary since yesterday morning. They have to check on him. It’s imperative. And there comes a point at which you simply need to let a patient REST. With so many caregivers involved, I think it’s a very hard thing to balance, because they each have to come in to do their separate parts, but I just want 6 uninterrupted hours for him so he can actually feel rested and get a break.
We learned a lot more about tube feedings today, and in another world, Julia had her school’s annual field day. She’ll be here with us tomorrow. Friends came and went, dropping off food and giving great hugs. We hardly stopped for a second. But that’s ok. We need to keep moving. Onward and upward. Forward…hop.