Note to parents with kids with failing kidneys: Do not continue reading if you are not having a strong parental day (Really, leave this site now). And go visit or Awkward Family Photos or Go Fug Yourself.
It’s no secret that Quinn was nearing dialysis before her transplant evaluation. Her kidney function leveled down at a steady pace slowly for a couple of years and then over the period of 4 months dropped at an alarming rate. If I had to guess, she would have probably had a catheter placed within a month that she had her transplant. If I, and a very few people involved in her care (doc local, doc out of towner, one coordinator and one case manager) hadn’t pushed for a preemptive transplant, she would likely be on dialysis until we could arrange testing (3 months for 1 person at a time) and surgery.
The same people had all seen firsthand the effects of quickly failing kidneys of a 7 year old child. We’d all (except for our case manager) witnessed Gage’s decline and I assume we all shared some silent guilt that he got that bad – without dialysis he would have died in a matter of weeks – before transplant evaluation, because by the time we got in for that he had very little function. His body was being poisoned from the inside out. He was in terrible shape.
I’m astounded (still) that some people in the health care field don’t think much about a child having to go on dialysis while waiting for a kidney, even when there are willing donors, and in some cases, like ours, multiple willing, potential donors. Some even have the power to change things, but don’t. It’s a sign they’ve lost touch with the impact on the child and the family. I know that dialysis kept my son alive and I am grateful for that option or he would have died. Don’t misunderstand that fact. I have gratefulness everyday for a machine that kept my son alive until Jody could donate her kidney to him.
But living on dialysis, while it is living, isn’t much of a life. What is life like for a child on hemodialysis (preformed at the hospital) 3 days a week?
For some kids, like teenagers, it begins at somewhere around 5:00am. They drive themselves or a friend or family member brings them to arrive at the hospital by 6:15am. Dialysis takes roughly 3 hours, a little more for some, depending on several factors. They come to the early shift usually so they can get to school around 9:30 or 10 and have a semi-normal school day. Unless they are so sick they can’t attend school and they are home schooled or served by their county’s homebound program, which is 5 hours a week of instruction. Many times they are too tired to participate in activities. So sometimes social activities are limited. Some kids, who have little family around them and their parent/caregiver, are driven to and from dialysis by strangers in cabs or on vans.
Kids who come in for the 10 or 10:30 shift are often little bitty ones – the under age 5 group. They don’t have school schedules to contend with so that is the schedule that is given – the middle of the typical dialysis day. There is rarely a choice of a time slot because machines are limited and help 3 kids per day of dialysis per machine. Kids in elementary, like Gage, come in around 2:15 which means they leave school early. For people like us, who are lucky to live near the hospital it’s easy, Gage missed the last 1-2 hours of school. Now, they want you be be there at 2:15 to be ready to get on the machine (takes 15-25 min) around 2:30 because the machine is going to run 3 hours (at least) so that is already pushing you to 5:40pm. But wait! If the machine you are supposed to be on still has a kid on it, you wait. Remember there are 2 other kids on the machine during the day. If they or their driver run late or if there is a complication with their health that slows things down, then well, you don’t get back in the area for prep until later and then 15 minutes for set up so you are pushing 3 or 3:30. Which means you aren’t off the machine until 6:30, or later. You are at the mercy of the time you can get on the machine.
What is being on the machine like for a kid? Well, if you are a teenager on the early shift, you sleep, or you listen to music and do homework, you read or you text, or you watch TV (each chair has a TV with DVD). If you are a little bitty one, you are in a metal crib, your parent or caregiver stands next to you to distract you from wanting to get out of the metal cage you are in. If you are a kid in elementary school or middle school you do your homework, watch TV, play video games. That is unless you feel nauseous enough to vomit for up to the 3 hours. You might feel fine, tired, drained or you might have a massive headache. It all depends on the rate they are running blood out of your body, cleaning it and putting it back into your body, which varies for each child.
That process can mess with your body and each body is different. So you spend a lot of time watching the docs and nurses fine-tuning the settings for the best dialysis arrangement. Except when they need to adjust it, which is more than it is not. They weigh you at the beginning and end of each session and record it. They record the settings on the machines. You are also hooked up to an automatic BP cuff for intervals of blood pressure checks. You come to hate The Cuff. If you are little and can’t be reasoned with to wear it and keep your arm still for the time you are on the machine that the cuff is monitoring your blood pressure, you come cry at sight of The Cuff.
If you are a lucky kid you won’t get an infection at your catheter site or an infection that starts there and moves to your blood. You can’t get the site wet so there are no showers, no swimming and a sterile environment even for something as simple as a bandage replacement – that means masks and gloves for anyone near the site uncovered or with an open edge on the bandage. Catheters have tubes that are hanging out of the body and well, accidents happen when you are a kid. Gage’s unfortunate accident was something as simple as a game of tag at school. Another child accidentally pulled the catheter and it moved just enough to create concern of it coming out (which would create tons of blood loss) with a simple tug of a shirt removal or hug and it had to be replaced. Many kids suffer infections, catheter replacements and hospital stays during their course of dialysis. In fact, all the kids I know from dialysis have.
If you are the parent you are kind of in the way. The nurses are up a lot going from kid to kid because they are recording numbers from the machine, the machine is beeping and they have to make it stop, and the BP machine is beeping and then there are the chairs for the guests. They don’t make them comfortable, you know. It sends a message that they don’t really want you back there. Unless you have a baby and it’s awake and crying to be let out of the metal crib. Then you have to be there standing (remember, it’s like a cage, and it’s high up, so there aren’t really any chairs that high, so if you have a little bitty one, then you are standing most of the time). If you have a little bitty one, you are praying they nap.
Part of our hospital’s routine was to provide a meal when the child leaves. So we order off a sheet and by the time we leave the food is there, but that’s okay because you can’t eat on dialysis and the kids I’ve seen are pretty hungry. So for as long as you are on dialysis, at least three meals a week are served on cardboard trays, on your way out the door. Carried by the child if they can hold it and in Gage’s case, his backpack and Sally, Ugly Orange Kitty. Often times you just want to get home because your kid is cranky from not having had a break (unless you call the drive from school to the hospital a “break”) so it doesn’t take much persuading for your kid to agree to eat in the car. Off of the cardboard tray they’ve carried themselves. In the back seat of your car as you drive, usually in the dark, on the way home (not too long before bedtime actually). Unless you have to drop off or pick up a prescription.
You are getting off during traffic if you are on the last shift. Most kid’s dialysis centers are in Children’s Hopsitals in cities, so often times the commute time is made harder because of traffic in the city. But most of the time, your child is eating, so they are distracted, unless they aren’t feeling well and they are throwing up into one of those kidney shaped (HAHAHAHA really) vomit holders and you are leaning over handing them napkins and towels. Sometimes they have a headache so bad they aren’t talking.
So what does your child miss?
Everything connected with time. Time to build friendships and more importantly to learn how to build friendships if you are a kid Gage’s age. For a baby, you miss critical time to develop your little body and brain. You don’t hit milestones on time. For important pre and teen years, puberty is messed up. For all kids, growth is an issue, so your body is smaller than your peers. You don’t really have time see your friends because of dialysis and all your appointments. Probably some tutoring to try to stay ahead (or just catch up) educationally if you are school-aged. Therapy appointments if you are an itty bitty one. You are on a restricted diet so going to parties and out to eat becomes an issue (if you want to stay healthy, but if you are a teenager…it’s hard not to eat what your friends are and it’s a constant struggle within yourself.). Many of these issues mess with your self-esteem too, by the way. Not for all kids, but for kids like Gage, who were probably going to have issues anyway this just compounds the problems.
School is a challenge. Not for all kids I’m sure, but a lot. It could be from having to have so much time out of school or it could be because you can’t concentrate when you are in kidney failure, as one teenager told me was her issue. I’ve never forgotten the conversation as a teenager explained she would raise her hand in class and by the time she was called on she would forget what she was going to say.
Dialysis. It kept Gage alive and I would help him through all of that and more to survive it. But still. There’s an impact.
Obviously, as the caregiver, if you try to work and care for a kid on dialysis, it’s hard. Because you either have to work for yourself or you have to have a hellofan understanding boss. You can’t make money usually (I couldn’t figure out the perfect way, except for being able to send some emails) when you are at dialysis with your kid, which you desperately need to pay for life and for the self-employed, insurance premiums, but what can you do. You hope that government assistance helps you enough. There’s the costs associated with being at the hospital. Parking, food (as a parent you skip lunch on dialysis days to get other things done during that precious time), and gas for transportation. Then there’s the dinner thing. At least three days a week if you are on the late shift like we were you don’t get to eat dinner together as a family (Gage usually went to bed close to when we got home). Siblings also miss out on your time if you are the caregiver parent. And what if you are single? You have to depend on family or great friends to care for your other children while you are out with your kid on dialysis. Because sick kids are first priority. Siblings are 2nd tier for the time being and they have to cope with that fact.
If you are married or a couple with a child on dialysis? You talk a lot about kidney failure and about what happened on dialysis. In a case like ours we were constantly talking about where we were in the donor testing process either for us or our (finally approved) non-related donor, Jody. That doesn’t leave much room for romance, you know? Because nothing says romance like cleaning up throw up or talking about what else your kid has missed during his time out for dialysis. Or talking about how you cope with the emotional effects of having a sick kid. Each day you play catch up.
Time for yourself as the caregiver? It’s great when you can steal a few moments for a movie, a hobby, a phone call. Even a bath or pedicure. But that doesn’t happen very often. And it’s made harder because when you are the caregiver it’s hard to let other people go with the child because no one knows them like you. For the few (literally few) times that someone took Gage (out of 78 times he had dialysis treatment) I worried about him, or it felt like I had to cover nearly every aspect of the visit and the potential mishaps they could encounter. It just felt easier going myself. If I wasn’t there, I worried constantly of what could be going wrong and how only I would know the exact way to help Gage cope (I know this isn’t the most rational thing, but you know what, I was his primary medical caregiver and that’s how I felt.).
If you are like me the one constant thing you think about is how to make your kid feel normal. But really, that’s impossible to do, even if you are as creative as me. There’s no way to make this feel normal. But you have to act like it’s normal or your head will explode.
The other constant things you think about are your financial stability, your kid’s education, their development, your job, your other child/ren, when will your kid get a kidney, your relationships and what you are ignoring in them and just about everything else because it all feels so out of control.
It is excruciating to watch your child go through dialysis. Heartbreaking to watch your child suffer the domino toppling impact of a progressive disease and poor health. It changes the very nature of the interaction of a family. Of a parent and child, a sibling with her brother, a husband and wife and their supporting loved ones. It changes everything that should have been, including the child they should have been.
So when people make decisions that prolong the process, donor centers have long testing times and the systems in place fight against a family for their kid to get a kidney, what they are really saying is….just put the kid on dialysis.
These pictures are from Gage’s first dialysis session on Friday, September 22, 2006.
Scared boy, worried parents.
All trying to hold themselves together and make this feel normal. Short session of dialysis for this first day with a regular session starting the following Monday and another 77 times.
