Sometimes I still forget that most people have no idea what dialysis actually entails. I have a tendency to casually refer to the kids as having been on dialysis like they will obviously know what that would mean. In doing so, of course I forget that I once upon a time would not have know what that meant. The word sounded daunting enough that I would have assumed it was very dramatic. I probably would have pictured an enormous, intimidating loud machine and a child wailing in pain and lots of surgical masks and general anxiety in the air.
In reality, dialysis actually looks from the outside deceptively simple. The babies were started on peritoneal dialysis which is a form of dialysis that essentially involves no more than putting water into the babies bellies and then pulling it back out again. Hemodialysis is considerably more complex in set up and nature but peritoneal dialysis can basically be done with a bag of sugar water and a tube. I think that the part of dialysis that most people found so surprising was just how simple it actually is- as long as it is working, of course. Dialysis seems amazingly easy when it is going smoothly and terribly complicated and confusing when complications arise.
We were actually lucky to get a 'sneak peak' at what dialysis would involve because we shared a NICU room with a baby who was already on dialysis. This sweet baby boy had been on dialysis for several months by the time Max and Addie would begin. And so we were able to both observe what was going on in his corner of the world and ask his mom questions as we approached the time to begin dialysis. We knew that there was no fan fare, alarms and drama when their neighbor went on dialysis and I think it definitely reassured us. Had we not had that daily experience of seeing his life on dialysis I know we would have been way more frightened so I am thankful that God placed us in the same room with that sweet boy so that his journey could provide reassurance for us.
Without kidneys, a person cannot pee at all. It's a weird concept, especially when you are looking at a baby in dry diapers! Without peeing, two things build up in the body which cause problems- water and waste products. Our dialysis buddy in the room still had his kidneys so he did still pee and could get rid of water on his own but his kidneys just did not effectively filter out waste. So dialysis actually had a smaller role for him. But for Max and Addie, they would rely on dialysis to get rid of all fluid and all waste that accumulated in their body. The premise of peritoneal dialysis is that you can place sugary water into the person's abdomen and as the blood circulates through, the magic that is osmosis and diffusion will pull both toxins and water out of the blood and into the sugar water.
I'm erring on the side of simplicity in explaining this, although I have done an hour long presentation to the 9th graders at my school explaining the process in terms of the principles of osmosis. But without my PowerPoint full of diagrams and without risking boring you to tears, it can be difficult to go into it with that level of scientific detail. So I'll stick with a more basic understanding which is definitely all you need to understand the impact that dialysis had on Max and Addie and on our family.
After approximately an hour, the once pure sugar water is now full of wastes and extra water and cannot really do its job anymore (a phenomenon called Equilibrium). At this point, that old water needs to be drained out of the body and replaced with new sugar water. Which will sit for an hour, and then be drained. Which is really all there is to dialysis. Fill the belly with sugar water. Wait an hour. Drain. Fill with new sugar water. Rather, Rinse, Repeat...
Initially, this process was done by their nurses. I will always remember their first day on dialysis, it was a Sunday and instead of sharing a nurse, they would each have their own nurse. Max had our favorite nurse Lori and Addie had a nurse we did not know as well but who was familiar with dialysis. The time came to begin dialysis and the nurses very simply open a clamp, placed a bag of sugar water on a pole and allowed water into the babies. Then they set their little hand held kitchen timers and we sat there. And that was all. It was so amazing to me that this moment we had so anticipated and so built up was so incredibly boring!!
After the hour was up, the nurse would then drain the water out of the body by turning another clamp. The nurses made it fun and turned it into a competition to see whose baby could drain more which I remember finding very funny and was very appreciative for anything to add a bit of energy to this process that I was otherwise finding to be monumentally dull! And the afternoon passed like that- clamps were turned, the babies were held and life continued absolutely like normal except for once an hour when the big drain would happen and we would all wait to see who baby would win that round. (I am pretty sure Max won Day 1 on dialysis which is most appropriate because Max was definitely the dialysis golden child in the long run!)
Over time, we would be able to get a machine to do the job those nurses were doing- filling and draining the babies at set times but it would be a couple of months before we would be able to switch to the machine. So for now, it would be lots of idle time with our two nurses, lots of unexciting turning of clamps and some bags of little more than clear kool aid. So when I would tell people the kids were starting dialysis I always thought they probably imagined it being way more dramatic and exciting than it was!
Like i mentioned earlier, though, the key with dialysis is that it is simple when it is working well. The first couple days on dialysis lured me into a false sense of security really. I was so underwhelmed by the process that within a few days I had abandoned all my worries and fears and decided dialysis was easy and things were all going to be sunny and rosy from now on. Never did it occur to me that this simple sugar water turning clamps process could go wrong in as many ways as it would. Sitting there bored on that first Sunday was not preparing me for the weeks that were coming when the difficulty of finding the right fluid balance would send my baby girl in heart failure.
I think I will always have a love hate relationship with dialysis. Dialysis kept my babies alive so I will always be grateful for the medical advancements that led to it being able to be used even on babies. And when it worked well, dialysis was blissfully simple and painless and we were able to continue with life as normal quite well on it. However, at the end of the day, dialysis can never replace a kidney and is a flawed process. And when it doesn't work, it can lead to terrifying life threatening crises. My love and gratitude for dialysis can only be matched by how haunted I will always be by some of the horrible scares Addie had while on it. But, complications and limitations included, I do know that dialysis was monumental in our journey and that it was necessary to sustain our family while we waited on transplant. So for that, I will ultimately always be glad for those bags of sugar and clamps that did the best they could to play the role of the kidney understudy those months in Max and Addie's story.