I’ve had a few people ask for updates, ask how things are going, ask how we’re dealing with everything. My answer waffles between the socially expected and accepted “Fine!” to the brutally honest “Shitty!” … but I usually eek out a fairly indistinguishable “Mmmmmeh-bleh-pffffft” and then sort of laugh. It gets the point across that things aren’t all hunky dory, without being specific. Most people let it go at that point, realizing that they have not gotten the happy answer they were looking for and are relieved to back away.
I have learned in life that people don’t really want to know that your life is shitty. Few people are close enough to you to really WANT to know about the bad side of your life. And if they hear that things aren’t going well, then they feel awkwardly bound to say something reassuring or do something helpful… but they rarely know what is the correct thing to say or do (nor do I), so they stumble through a messy exchange, fervently wishing they’d asked someone else how THEY were doing.
So in all of my human kindness, I try my best to spare them that. Mostly because I’d like for people to continue to interact with me and I realize that if every time they talk to me I become a dervish of negative, whining energy, they will avoid me. And I do need some peoples around.
But here, on my keyboad, in my world that is the blog, I can say whatever I want, I can say it all. And if it makes people uncomfortable, they can just pretend they never read it. And none of us will be the wiser.
So here goes.
After spending 6 weeks (4 weekday mornings per week) at the dialysis center being trained, we have spent the last 7 weeks administering dialysis to Michael in our home. We have relegated a sizeable part of the gameroom to this task. We have a giant recliner that we cover with a king sized waterproof mattress pad to protect from blood spatters. We bought a hospital utensil tray for the supplies to be used during dialysis. That stands between the recliner and the giant dialysis machine that beeps and whirs at random times, and radiates heat like a mofo. On the other side of the recliner is a book case we’ve had for years, but it now houses tape and gauze and syringes and masks and tweezers and tourniquets and a blood pressure cuff and a thermometer, and alcohol wipes and various sterility-ensuring items etc etc. Now of course, me being me, the open shelves have decorative baskets set on them to hold the supplies. Because heaven forbid we have plain brown boxes of ugly medical supplies showing!
Oh, and the game room closet! The one that used to be thought of as the Game Closet, with a future earmark to being converted to a dry bar upstairs when we converted the upper half of the game room into a sports-themed fun adult area. It’s now half full of stacked boxes of the big supplies like cartridges and dialysate bags and tubes and needles and saline sacks and… well… dialysis STUFF.
We use the supplies from both areas as needed, and we order supplies as we get low, from 2 different medical supply companies. Each month online forms come asking what we need, so we fill out the request forms, and a few days later more boxes show up on the front porch. I cannot begin to tell you how many cardboard boxes we have opened, sorted, broken down, and sent to the recycle can in the garage. So. Many. Boxes.
So the supplies are there, the area is set up, and we now have our routine mostly in place. Our “official” prescription given to us by the nephrologist for administering dialysis is every other day, 2 hours at a time. Which would mean Monday, Wednesday, Friday one week then Sunday, Tuesday, Thursday, Saturday the next week, alternating ad infinitum. It sounds good and regular in theory, but when you look at the calendar of activities in your life they rarely line up with this sort of schedule. If you have a child who plays a sport (and we do) then practices are the same day each week. If you have a child who wants to volunteer at an animal shelter on a particular day or two each week (and we do) then you need to leave that particular day(s) open if you can. So we looked at our calendar and decided that Monday and Wednesday were consistently busy evenings, while Tuesday, Thursday, and Friday were not. And weekends always had some free time in them. So we settled on a schedule of Tuesday and Thursday nights, and then anytime on Saturday and Sunday. A consistent 4 treatments a week. And we know that this treatment schedule is flexible so we can move the 4 days around if we need to; this is just the schedule that works best right now.
I mentioned up there 2 hours at a time. That 2 hours is just the time Michael is actually hooked up to the machine, when his blood is being cleaned and dialyzed. There is also a certain amount of pre work, or set up, time and some post work, or break down, time. First we have to decide what time are we going to start so that we can put some numbing cream on Michael’s arm to make the needle entry as pain free as possible (it’s still not pain free) and time it so that the numbing cream is most effective. They estimate that it takes an hour to be at its optimum numbing potential. I sure wish he could tell us if that’s true. He winces just as often as he doesn’t, even at the supposed peak one hour time.
30-40 minutes later, the machine has to be loaded with a special cartridge full of tubes that have to be hooked up to a saline bag and to the dialysate liquid. This takes a few minutes to load and 15 minutes to prime. During the priming stage, Michael has to be weighed, have his blood pressure taken (both sitting down and standing up), a rectal suppository inserted to ensure he has no big seizures during the process, and his temperature taken. There is a flowsheet full of data that has to be filled out each time to record all of the vital signs we just took, as well as information regarding the machine’s lot numbers for the various parts.
Next we program the machine with the numbers we decide based on his weight for the day. This part has been very difficult for us because it has truly been a guessing game. There is a target weight, called a dry weight, that we are trying to hit. Dry weight is the amount a person weighs when they have no excess fluid in their body. For most dialysis patients it is simply a matter of knowing how much they typically weigh, calculating how much they drink minus how much they urinate (if any) and taking off that amount of liquid that is unaccounted for and presumed to be excess. Our issue is that we have no idea how much Michael should weigh. Since his kidneys have not been functioning we know he’s had a build up of waste products but he also has been retaining fluid. He still urinates but he’s not urinating out as much as he’s taking in in liquids. Typical dialysis patients also can determine if they have any bloating, if their lungs feel full or heavy, if their blood pressure is elevated, and a couple of other key things. Michael is so bone thin he really has no visible water retention, he can’t tell us how his lungs feel, and since he wears pullups and has accidents we can’t get an accurate measure of his urine output.
So we make our guesstimate. We don’t want to pull too much fluid off because that will cause cramping and pain as we’d basically be dehydrating him. We watch for signs of that throughout the treatment as the fluid is removed (we can see the number of liters decreasing on the machine readout) and we have saline at the ready if he looks like he’s in pain and we can push some back into his system.
We do know we have been successful in one key area, because his blood pressure is significantly lower than when we started. Too much fluid in a body causes blood pressure to go up. His numbers the first few weeks were in the 130’s/90’s range (even on 3 different blood pressure medications) and recently we’ve been consistently in the 100’s/70’s range and NOW have to be careful it’s not dipping too low. We’ve come completely off of one (out of 3) blood pressure medications and are in the process of weaning him off of a second one. That was a huge hurdle to overcome.
Okay! Now that all of the prework is done and the machine has been programmed with his prescription for the day, we finally put Michael in the rocker-recliner and flip up the footrest so that the chair is just a recliner. Rocker would be bad.
After we don our masks and gloves, the next task is to pick off the scabs that have formed over the access (entry) holes so that Mike can insert the needles without shoving old dead scabby skin into his system. Sometimes this takes 30 seconds and sometimes it takes 5 minutes. Crazy disparity there for scab picking.
Then comes the actual beginning of the dialysis process. I kneel on one side of the chair and position myself so that Michael can’t kick his legs, can’t reach over with his right arm, and can’t move his left arm so that he’s as immobile as possible when Mike inserts the needles. He cleans off the site with 2 antiseptic cleaners then inserts the needles, one at a time, while I hold onto Michael and watch his face for signs of distress. Obviously this is my least favorite part. His reaction ranges from a body jerk (the worst) to his eyebrows furrowing in pained confusion to a glance over at his arm to see what’s up to no reaction at all. Once he was “singing” to himself (he makes random humming sounds to entertain himself and I call it singing) as we started and he didn’t even pause in his song as the needles went in. I keep hoping for more of those days.
Then Mike primes the lines (lets the blood flow to the end of the tube line) and runs the lines to the saline bag hanging on the hook. Twice a month we have to draw labs to be sent for analysis. Mike inserts the lab tubes into the arterial line and pulls out whatever they are requiring that week. There’s a whole set of steps for the vials of blood including a centrifuge for spinning it, then refrigerating it, then packaging it on ice to be picked up by a FedEx dude.
And now, FINALLY, we’re ready to actually start the dialysis. We check to see that all of the color coded connections are set right. 4 sets should be open, one set should be closed. Then we both take a deep breath, say “Ready?” and push the buttons to start the machine.
If everything was done correctly, the machine makes a start-up whirring sound and the blood begins to flow out of his arterial line through the tubing that runs through the cartridge in the machine where it flows through a large tube that somehow allows dialysate to clean the blood without actually mixing into his blood, then back out of the cartridge and into his venous line. Over and over and over the blood flows out and then back in.
We record the start time, do a blood pressure reading and watch the numbers on the machine that show the various pressures from the needles. If the needles are positioned incorrectly, an alarm will sound; if there’s a kink in a line, an alarm will sound; if there’s a leak in any of the tubing or equipment, an alarm will sound; if Michael jerks his arm or bends his arm, an alarm will sound; if his blood isn’t flowing correctly, an alarm will sound; if we haven’t sacrificed the correct chicken, an alarm will sound.
And it’s not like the alarms sound and you get a read out with words like “Arterial needle out of position.” No, you get a number. A Yellow 10 or a Red 24 or a Red 38 or whatever. I think there are 60 different alarm codes. And you have to flip open the book if it’s not a common alarm to find out what it is, and what to do to rectify it. A few we know already because they happen fairly frequently and we quickly fix them. A few we’ve had that were new to us, but we were able to overcome. And then there were a few we’ve had that we couldn’t fix even after a call to the Help Center and we had to terminate the session. THAT is the WORST feeling EVER. To be less than an hour into the session and have to terminate. When you terminate a session because the alarm sounded and the machine refuses to start again, you lose all of the blood that is in the tubing and in the machine. Twice in one weekend we had to terminate and he lost 277 cc’s (about a half a pint) of blood each day. For a kid who has struggled with anemia and red blood counts, he doesn’t need to be spending time making new blood.
Ever since that weekend (when we were told to come into the Center on Monday morning to ensure he’d get a good session with a nurse watching over us because it had been too long between sessions and his blood needed to be cleaned… it felt like being called to the Principal’s Office) Fear Of Alarms is the number one stressor in my life. I sit there during the 2 hours, holding Michael’s arm, recording data, watching TV or surfing the internet, completely tense waiting for the dreaded dinging signalling something is wrong. The past few weeks we haven’t had any alarms, but that doesn’t make me feel any more reassured or any calmer. I just keep waiting for the Bad News Ding.
But meanwhile, when things aren’t dinging, Mike and I sit one on each side of him, holding his arms for the 2 hours. Every 30 minutes we have to do a blood pressure check, and write down some other numbers the machine is showing, and verify we’ve checked his needle sites to show he’s not bleeding out onto the floor (short sleeves only and don’t put a blanket over that arm) and administered saline if needed. And in between that we watch TV and talk. With no alarms it’s not an awful way to spend 2 hours.
Of course that’s assuming he’s cooperative. Sometimes he dozes off, sometimes he sits calmly, sometimes he even looks like he’s enjoying watching TV although we know he doesn’t ever actively seek out that activity. But most times there comes a point when he’s active, even agitated, and wants out of the chair. He struggles to lean forward and get up. We hold him back in the chair and calmly tell him he has to stay seated. We are rewarded with a dirty sideways look.
Lately he’s taken to sloooowly, imperceptibly, sliding down in the chair, and we don’t even realize he’s gotten so low until we are alerted by an alarm sounding that there’s a kink in a line because his elbow is so far bent, or we feel the chair tilting forward due to his legs almost reaching the ground. Then we have to bend his legs up on the footrest, get a grip under his armpits and hoist him while asking him to Sit Up. He obliges by pushing with his feet against the footrest and sliding upwards. We have had to do this anywhere from 1 to 12 times in various sessions.
When the session ends, we mask up again (Riley even knows to mask up at certain times if she’s in the room) and start the process of flushing the lines with saline to send the residual blood back into his body. We do another blood pressure reading, and then Mike disconnects the lines and pulls out the needles, one at a time. He has to hold a piece of gauze over the access site for many minutes because Michael’s fistula (the newly constructed vein/artery connection) is very strong and pumps the blood quite rapidly and it takes awhile to get the flow to stop. Early on, when he was severely anemic and his blood was thinner, it took 14-19 minutes to stop the arterial access. It would spew blood if Mike took the pressure off too soon. Since he’s been given sufficient amounts of iron and epogen so that his body can make and store iron again (kidneys produce Erythropoietin which is a hormone that helps the body make and store red blood cells– kidneys do a TON of things!) his blood is thicker and it clots faster after the needles come out. It also was too thick and caused the alarms that one weekend so now he has to have a blood thinner administered just before we start the sessions. See? Fix one thing, cause another problem.
Then we cover the site with gauze and tape, get 2 more blood pressure readings (one sitting, one standing), take his temperature, and weigh him to see how we did with fluid removal. And then, a mere 3 to 3-1/2 hours after we have started the process, we’re done. Til the next time.
At this point we either take Michael downstairs to eat a meal (I usually have something prepared to reheat or do the final preparations on a new meal while Mike does the final weighing and temperature reading upstairs) or we go out to eat. Either place, the boy will EAT. He eats so much food right after he’s had a dialysis session it’s almost gross. And not just his usual stand-by favorite foods, but pretty much ANY food: pastas, stews, salads, sandwiches, casseroles, chili, meats of all types, side dishes, on and on. Sadly this has been the only time he’s significantly hungry and even as early as the next morning his appetite has dropped off again. This is a question we’re working on finding the answer to, because he really needs to be eating more consistently.
Then we go upstairs so Mike can unload the cartridge from the machine and throw it away along with the drained saline bags, the used tape and gauze and syringes, tossing all of the sharp needle ends into the “sharps container” for disposal. After he’s done with that I wipe the machine down with a 10:1 water/bleach solution and finish the flow sheet report, which Mike then attaches in an email to the dialysis center.
Twice a week the machine has to be loaded with dialysate which is the cleaning agent that mixes in the machine to clean out his blood before returning it to his body. That’s done on a non dialysis day and isn’t time consuming, it just needs to be remembered to be done. And once a week the drain line is flushed with bleach to avoid it becoming clogged. And once a month a water sample is pulled to be sent to a lab in Florida for analysis.
It’s a process. A multi step process that is becoming more routine as we do it, with a reminder to never become too complacent as we do it. There are so many opportunities for carelessness that could lead to infection. Hygiene, good sanitation, etc, are all so very important.
So. That’s WHAT we’re doing. The bigger question probably is HOW are we doing as we’re doing it. It’s a tough question. We’ve run the gamut of emotions as we’ve dealt with it all. Fear has been a huge factor. Fear when we heard he needed this process to live. Fear we wouldn’t be able to master it. Fear that, even though we’ve technically mastered it, we can still screw it up.
And we’ve traveled through a thought process that started with a frightened “can we get this?” epiphanied to a triumphant “okay we got this” and stumbled onto a “okay we’re always going to have to be getting this” …and that last thought is where we are feeling stuck lately. It’s overwhelming to realize This Will Never End and This Is What We’ll Do For The Rest Of His Life.
This is not something he will get through and recover from. Dialysis will not make him better. What we’re doing is hooking him up to a machine that mimics his kidneys to perform one of the functions of his kidneys, which is removing all of the waste from his blood. And when we take him off the machine, his body immediately begins to deteriorate as the waste immediately begins to build up. We help make him feel better temporarily until the next session. A cycle of up and down. Dialysis will not heal him. It will not cure him. It will never end.
I’ve had family members receive treatment for horrible diseases, including cancer. They receive their prescription from the doctor, and then they endure chemo and radiation and their bodies are poisoned in order to kill the bad cells that have infiltrated their organs. And either the disease wins or the treatment wins. But when the treatment wins, it really and truly wins. They can be cured. They can be whole again.
This isn’t that. There is no winning. There is no “well after 20 or 50 or 500 treatments your kidneys will work again; this treatment has fixed you.” No, kidneys that are broken like Michael’s are broken are broken forever. And without this treatment, he would just get sicker and sicker. His blood would become more and more polluted with no way to remove the waste building up, and eventually his heart would give out. So by hooking him up 4 times a week, we’re basically saving his life.
And while that sounds huge and noble, I can’t find any heroism in that. I find mostly overwhelming panic. Since we have to do this forever, we have to stay healthy to be here to do this forever. We can’t have an accident and disappear. We have to be here. Forever.
So there is a soundtrack of “Don’t” playing in my mind all the time. Don’t get in a car wreck, Don’t break your wrist, Don’t let Mike’s plane go down, Don’t fall down the stairs, Don’t eat that crap food, don’t , don’t, don’t…. Don’t disrupt the routine we have going because we have to keep saving his life, don’t, don’t, don’t….
A body could go crazy with that drumbeat sounding….
And yet, the world keeps turning. So I have to turn down the volume on that cacaphony of catastrophe and pay attention to the rest of the things in our life. The other kids, holidays and birthdays, sporting events, school activities, the three stinky dogs, flippin’ grocery shopping. I continue to listen to the stories of the little one, to appreciate a pretty day, to find the humor where I can, to try to find a balance in the family. And try not to let the bass notes of lunacy color all of our interactions.
We’ve adamantly refused to not let this Thing We Do be an excuse to not do the other things we need to do. Which is why we still helped her sell 200 boxes of Girl Scout cookies, why meals get made and laundry gets folded, why Mike still makes sure to take her to volunteer at the animal shelter, why we still plant flowers in the yard, why spelling words and volleyball practice and church lessons still happen, even on days when I struggle to keep the darkness from taking over, and work hard to turn a deaf ear to the defeatist voice whispering sour nothings into my ear. That our dealing with the big parts of Life and Death don’t let us forget that the little parts are important too… on some days, maybe even more important.
But in piecing all of the little parts together, we know that each plan will revolve around “how will that work with Michael’s dialysis schedule.” We can make invitations to activities work; we just sometimes have to reassess our weekly schedule. And we’ve realized that all of our outings and vacations will be curtailed more than we’re used to.
Our Old Normal was never really normal. And looking at what we’re doing now, I realize our New Normal is ridiculously not. And never will be.
But we can’t change the hand we’ve been dealt. We just play on.