When I last blogged about Michael and our journey with him through dialysis, we had just gotten into the rhythm of doing home hemodialysis. In that blog, I outlined the process that we go through each time we administer dialysis–the set up, the take down, and all the ups and downs in between. I also mentioned that we were mentally in a quirky spot, trying to wrap our heads around the Forever aspect that is dialysis because dialysis (we are frequently reminded) is a treatment, not a cure.
It was a very dark time for us, one where we tried to not get mired down in dark thoughts but not sure how to avoid them. Where we tried to be careful not to snipe at each other because each other was kind of all we had to lean on and we couldn’t afford to lose our balance. And where we tried to not be overwhelmed with the feeling of “this is for forever and we have to do this for forever and this is all we’ll ever be doing and we’re trying so hard not to resent this machine and all it represents as far as our future and our freedom forever and ever and ever.”
But we were. Mired and snipey and overwhelmed.
It felt like every sentence I said had the word “dialysis” in it. What did y’all do last night? Dialysis. Can you come to Bunco? No that’s a dialysis night. You know, we should probably go to the grocery store before we start dialysis. Are you going to Book Club? No we’ll be doing dialysis. We have tickets for that Rangers game, but I guess we’ll have to sell them because that’s a dialysis night. Can Riley come over to play? Absolutely she’d love to– I can bring her over but can you bring her home because we’ll be doing dialysis by then. Want to meet for dinner? Sure, we’ll start dialysis at 2:00 so we should be done by 4:30 and can meet you by 5:30. Unless there’s a problem during dialysis and it goes long, in which case I’ll text you. During dialysis. Cuz, you know, we’re doing dialysis.
Dialysis, dialysis, dialysis… like the ooze in The Blob, it rose up and took over, drowning and crushing all of our normalcy. That’s how if felt at the worst point.
And while we still talk like that, and think like that, and work our schedule around that… it doesn’t feel quite as awful anymore. It almost, somehow, has become okay. It’s this thing we do, four times a week, every week. It’s still as long and convoluted and slightly scary and often boring as ever, but it doesn’t feel like it’s controlling us anymore. We don’t feel drowned or crushed. It’s not overwhelming.
Maybe the overwhelming feeling has subsided because we’ve seen what a big difference it has made to Michael. How much more energy he has, how much more interactive he is, how much better he eats, and how much improved his health numbers are. Everything that was out of whack in his lab results have been fixed through dialysis. Twice a month Mike draws blood as part of the pre and post times in the dialysis sessions and packages it up to be sent to the lab. Within 2 days the lab result numbers are posted online. And the results reveal that everything has improved considerably.
Then once a month we meet with the dialysis team (the nephrologist, a nurse, a dietitian) and we discuss his lab results with them. And at each of those meetings, we have been given high praise and positive feedback, as things roll along in the right direction. We’ve mastered the process and we see that what we’re doing is working, and is helping to improve our son’s quality of life. Overwhelming took a back seat to Overjoyed at some point.
Or maybe the overwhelming feeling of home dialysis has subsided because we’ve done it so many times. To be precise, we’ve done it 100 times. Under our control, on our machine, with our hot little hands: 100 times.
I didn’t think it had been that many times, but it had. How do I know? Well, I’d read a status on one of the Facebook Home Hemodialysis pages (did you KNOW there are Facebook Home Hemodialysis pages?) about someone hitting their 1,000th treatment mark. I thought, “1,000? What, have they been doing this for 10 years?” ( because my fairly impressive math mind apparently wasn’t firing on all of its usual cylinders in that moment)
So I got out our binder where we keep the flow sheets where we record all of the data during the dialysis sessions. Every 30 minutes during dialysis we have to record Michael’s vital signs and jot down some machine readings and a bunch of other thingamagoobies that keep us kosher with the dialysis treatment center and possibly some laws somewhere, and we keep the sheets in that binder. I flipped it open to the first session, which you might remember was on Valentine’s Day (Romantic dinner? no, sorry, we were doing dialysis) and numbered that sheet #1 and then marked all of the rest of the pages stopping at #99 on Thursday. Which meant the session we were about to begin on Saturday when I started counting was going to be session #100. How fortuitous that I chose that day to do the count, am I right? Weirdness.
This meant that session #100 was about 1 week short of the 6 month mark of doing dialysis at home. 6 months. In some ways (like everything in life) it feels longer, in some ways shorter. During that time, we’ve handled machine malfunctions (we’re actually on our 2nd machine because the 1st one just refused to reset itself one day and they sent us a new one the next morning), alarm codes, emergency shutdowns, and… vacation! Twice we’ve taken this bad boy to the beach and done a dialysis session on Michael in the condo. It wasn’t my ideal way to spend that particular 4 hours, and it CERTAINLY wasn’t Riley’s ideal way to spend that particular 4 hours. She voiced her displeasure out loud, not happy to waste vacation time sitting in the room. I reminded her that Michael couldn’t go more than 48 hours between dialysis treatments, but since we had dragged the machine to the beach to “waste” that time doing dialysis, we were able to stay an extra 2 days at the beach. Her math mind WAS firing on all of its usual cylinders and she quickly realized the upside to that equation.
If I had to pick something that hasn’t 100% worked itself out during the 100 treatments, it would be how this has affected Riley. At first we thought we’d just let her do whatever she wanted to do while we tended to Michael and the dialysis sessions, but we quickly found out she wanted to be part of what we were doing. So now we try to involve her in as much of the treatment as she wants to be on any given day. She has taken his temperature and his blood pressure before we start; she puts on gloves and a mask so she can tape up his arm after the needles are withdrawn and the bleeding finally stops; she helps Mike with the post-treatment blood pressure and weigh in; she cracks the 3 eggs that are often the basis of his 6 Breakfast Burrito late-night dinners when he’s starving after dialysis; and she’s peeled off the wad of tape and gauze on his upper arm after the minimum 4 hours has passed.
We all sit together in the gameroom watching a movie or a Rangers game during the treatment, with the volume turned up to override the machine’s hum. But it does feel like Mike and Michael and I are all on one side of the room tending to Michael to keep him quiet and seated, while she is separated from us, especially during the beginning and ending sections, where the needle insertion and withdrawal happens. If she’s talking when the machine beeps signaling it is time to record data, we have to halt her mid-sentence because we only have a 2 minute window to get that done. After we get everything started, she will often squeeze onto the arm of the recliner to sit near us, or she will bring a deck of cards over for me to attempt to play a game of Crazy 8’s with my one free hand.
She frequently asks on dialysis nights, “Are we doing anything tonight besides dialysis?” This is such an odd question when I hear it, made even odder since she doesn’t usually ask it on non-dialysis nights even though we rarely do anything outside of the house on those nights either.
This is the one thing I don’t know how to undo or to fix–her feelings about this part of her life. Each of her siblings has grown up being involved with Michael in various capacities: vacation constraints, being the focus of unwanted attention, early departures from get-togethers, untimely and unfortunate smells. But never has our involvement with him been as time consuming as it has been during the dialysis treatments, and she’s the only one at home to be dealing with it. It’s natural that she feels left out and in some ways, jealous.
Obviously she understands the importance of the process. We’ve explained what kidneys do, how Michael’s aren’t doing it, and what happens if we don’t do the treatment. She’s seen him at his sickest, and definitely doesn’t want to see Michael revert to his not eating, not happy, oh no he’s going to throw up again, days. She’s never suggested that this be something she wants us to stop doing. But I know that if it feels to ME like a lot of time is spent revolving around Michael, it has to feel even more disproportionate to her.
We muddle through as best we can as we are wont to do. Muddling experts, as we all are in life. We keep her focused on her activities. We’ve tried to maintain as much normalcy as possible: volunteering at the animal shelter, going to Rangers games, having playdates, going to summer mini-camps, going on vacations (both the kind tempered by a dialysis treatment, and a shortie trip without Michael while my mom watched him for 48 hours), and having regular family time going out to eat, watching movies or swimming in the backyard.
Normal things in a decidedly abnormal environment is the best we can offer.
Meanwhile, abnormal has taken us into our second set of 100 sessions of dialysis.With the machine and the paperwork and the labwork and the meetings. With the needles and the blood and the tubes and the numbers and the gauze and the tape and the tubes and the tubes. Cuz, you know, we’re doing dialysis.