Once upon a time, when I had a normal life and simpler problems, I taught Psychology. I loved learning about how the mind works and the tools to treat it when problems arose. Of all the mental illnesses we would cover, students were particularly drawn to learning about phobias. From the unusual things people could be afraid of to the creative ways to treat them, it is undeniably an intriguing look at the human mind. One theory is that the best way to treat a fear of phobia is simply prolonged exposure. We tend to fear things that we have not experienced and were we to experience it, the irrational fear would be replaced with a logical understanding of the previously terrifying concept. There is plenty of debate as to whether that form or therapy is brilliant or downright traumatizing but it has certainly been widely used.
Obviously I was not always afraid of hemodialysis. Back in my blissfully simply psychology teaching days, I never even thought about hemodialysis, if I even really knew what it was. But over the course of the year since Max and Addie, I had learned enough to be truly terrified of it, complete with sweating, heart racing and shuddering at the sound of it. Any parent could surely identify- imagine holding your new small, dependent, soft, just starting to smile and cling to you new baby and hearing about inserting a plastic tube into their heart. Then hooking them up to a machine that pulls their blood out of that tiny baby's heart, running it through the machine, easily ten times the size of your wee one, and then after three or four hours returning that blood, hopefully without encountering seizures, blood pressure swings or fatal infections. It would surely be enough to terrify any new mom. On top of the whole removing my baby's blood fear, we had been warned that babies on hemodialysis often need repeated blood transfusions, even every single hemo treatment and that more than six blood transfusions can make finding any compatible donor for transplant close to impossible. Both the immediate and long term risks scared me to death.
For this reason and because every doctor seemed to say the word quietly as if it was the medical equivalent of Voldimort and simply saying it would wreak havoc, I had a full blown phobia of hemodialysis. And throughout those two weeks in November, it was lurking at every corner and filling me with fear. I was so adamant against it initially that spending two weeks in the ICU, having chest surgery, and essentially starving my child all felt like a better option than hooking her up to the dreaded machine. However, my phobia was about to be put to the ultimate test- it was about to receive exposure therapy and time would tell if I would fear it more or less after seeing it face to face.
Exactly two weeks after Addie initially came to the hospital with fluid in her chest, we are sitting in the hospital room with a new chest tube in place, restricting her fluids and providing pitifully insufficient dialysis and feeling thoroughly defeated. The kidney doctors rotated weeks on service in the hospital so after a year of being immersed in hospital culture, we knew that Mondays would mean a new doctor, a new perspective and a new plan. Dr Doom and Gloom had moved to another hospital a few months ago so at this time, there were only three kidney doctors who would alternate: Dr Optimistic, Dr Nice and Dr Funny. I even told them I had them all pegged and really with those descriptions, we clearly liked them all and felt they all brought something useful and distinct to their way of interacting with us.
That Monday, Dr Optimistic came on to replace Dr Nice. This doctor was also the head of dialysis and the head of transplant so the doctor we had the most experience with and attachment to. She loved Max and Addie and had invested in our family and did always try and encourage us that we would survive all of this and see a great outcome. That Monday though, she walked in looking very sad. Since she had been one of the key ones emphasizing how hard hemodialysis would be on them, she definitely came in with a heavy heart to tell us we needed to start Addie on hemodialysis. By this point, though, we definitely saw it coming and had begun to make our own peace with it.
Dr Optimistic (or Dr S as we actually call her) went through all the reasons why we did not really have any other option. It was pretty clear that we did not know how to stop her from leaking fluid into her chest and continuing to withhold food, run poor dialysis and leave a plastic tube coming out of her side were not appropriate long term solutions. I will never forget Dr S saying to us that we needed to move to hemodialysis immediately because Addie was getting very sick on the inside and if we did not act soon, she was going to be backed into a corner that we could no longer get her out of. Right now, we could still help her and get her sorted out but if we left it much longer, it could be too late.
Those words were exactly what I needed to sign all the consent forms for hemodialysis confidently. I knew we needed to help Addie now and that this was the only choice we had. After all, everyone knows you never put a baby in a corner...
We actually could not act as quickly as we would have liked though because Addie was actually too sick and compromised for anesthesia that Monday. I always assumed you could be so sick you needed anesthesia, I had only recently learned you could be so sick you were denied anesthesia. Without good dialysis, all the electrolytes in Addie's body had become so messed up that it was not safe to put her under. The plan was we would substantially increase her peritoneal dialysis, running it with greater amounts of fluid and for longer for the next day. This would cause much more fluid to go into her chest but we had a chest tube in place to handle that. And then once we got her levels acceptable, she would go to the OR and have the plastic hemodialysis catheter tube placed into her heart. It would protrude out of her chest, in the area where you hold your hand over your heart to say the pledge. Then, because she was needing good dialysis so badly, the plan was to take her directly from the OR to the PICU and go ahead and have her first dialysis treatment that day. We were assured that there would be lots of doctors in her room and standing by during that treatment since we were not sure how she would respond to Hemo and especially having just been under anesthesia.
After that, we would remain in the hospital for a week or so for healing and monitoring. And then we go home and return five days a week for a three hour hemodialysis treatment. That which I had so feared was about to become a very big part of our lives. But, her home machine would no longer be used, there would no longer be fluid in her belly to get into her chest and she could breathe comfortably and sleep free of any machines. It had its clear pros as well.
For the 48 hours after we formulated that plan, Addie got a lot of dialysis and the doctors measured her bloodwork carefully and we prayed and worried. It was the worst part- knowing what was in store and knowing how many bad things could happen but having nothing to do but still in a small room and wait for it. Finally, the waiting was over and Wednesday arrived. They wheeled Addie off to the OR to get her catheter placed and we sat and waited. Normally, we were waiting for the surgery to be over and the relief to set in that the worst was past. This day though, we were anxious to get her out of surgery and our eyes back on her but knew that it would be a short-lived relief as we then went straight to dialysis. This day, more than any other, was jam-packed with anxiety and uncertainty. My mom, her best friend Becky and I spent the day together, trying to make small talk or read or tell each other stories, anything to take our minds off it all but the anxiety was so thick, it was as much a presence in the room that day as we were.
After a couple of hours in the OR, we got to go see Addie in recovery. She was groggy, whimpering in pain and now sporting her large new plastic tubing. It was nearly unbearable to fathom putting her through another traumatic event that day. The emotional part of me wanted to unhook her, grab her in my arms and just run. But, any time I thought about that, I remembered the metaphorical corner she was backing herself into without hemodialysis and knew that loving her meant holding her hand while she faced this and not whisking her away from it. So, I swallowed the pain and fear and walked with as they wheeled her into the ICU room and placed her next to the machine that towered over her in size. Addie was still drifting into and out of sleep so largely oblivious to the chaos in that room. There were two dialysis nurses- one of whom was our good friend who was their peritoneal dialysis nurse and another nurse who would be running the machine with her. Her PICU nurse was in the room and several PICU doctors were either in her room or just outside of it at all times. Dr S also wanted there to be a nephrologist kidney doctor in the room for the entire hemo treatment and could not be there herself for it all as she had clinic appointments that afternoon.
So into the crowded room where we all were hushed and stressed, entered Dr Funny. As with the other kidney doctors, I had known him close to a year now and always welcomed his stints as his jokes and cheerful approach lightened the atmosphere. Back in the NICU when Max's breath holding spells were scaring the other docs, he would make quips about how interesting it was that I decorated one babies bed in pink and one babies bed in blue and they had each matched their surrounding in their own coloring. He was no stranger to seeing us mid crisis as he had been on the terrible week when Addie was on the ventilator with heart failure so he did not seem particularly surprised to walk in and see me pacing the room in my yoga pants, sweatshirt and ugg boots and crazy hair thrown up in a ponytail looking stressed out and overwhelmed. He didn't seem surprised that I had my mom and Becky with me, as he was used to my support system always being a few feet away. He sat down at the end of the sad little hospital windowsill couch and pulled out a bag of cards.
We were surprised and intrigued as we saw him carefully take a letter on pretty paper and fold it, enclose a picture in it, stuff it in an envelope and then place address stickers and stamps on it. When I stared at him quizzically, he explained that he expected the next three hours to be completely boring and uneventful so he may as well work on his holiday cards while he was sitting there. It is hard to explain how much those words filled me with relief. Here I had been convinced the next three hours were going to be horrific, filled with blood splatterings, seizures, monitors alarming and utter panic and heartbreak. I had prepared myself for the worst few hours ever, But he who knew so much more than me had instead expected boredom and some down time. Surely if he expected blood to shoot from the machine, he would not have his precious cards out. Surely if he anticipated having to leap up to do CPR or dramatic medical interventions, he would not want a lap full of cherished photos. Certainly if he thought he was going to be making constant life and death decisions he would be pacing and scowling like me and not chuckling at his charming family's letter. But he did not seem to be worried about any of those things. And with that assurance, I exhaled, calmed down and paced at least a little bit less.
My mom and Becky, sitting there as bystanders to this scene and feeling quite restless, asked Dr Funny if they could help with the cards and so he handed one a stack of letters and pictures and the other a stack of envelopes and so the Holiday Card Assembly Line began. As the dialysis nurses fiddled with the machine and watched the monitors and Addie slept and I paced, they sat and chatted and stuffed. And that simple set up at once made the room seem less tense and less scary. As other doctors would come in and out, they would check on Addie and see that she was doing fine and then go over to check out the holiday cards, smile over the adorable children, debate about which recipients' names had changed and make cheerful small talk about the upcoming holidays. It was the next best thing to setting up a Christmas tree or placing Santa in the corner. In a room of anxiety, a little bit of cheer had snuck in.
Three hours later, the cards had been finished and Addie's first dialysis treatment came to a completely boring and uneventful finish. She had either slept or just tiredly glanced around. The dialysis nurses diligently managed and watched the machine but the handled it so well that from the outside, there was no obvious issues. Her vitals remained stable and the PICU team who were circling around found there to be nothing for them to do. The bag of blood standing by in case she needed a transfusion remained untouched. Addie's blood was cleaner than it had been in weeks, and we had just faced and survived our biggest fear. We were exhausted but also at peace that evening. That which had felt completely insurmountable had just had happened and we were all okay.
I won't say that I was 'cured' of my fear of hemodialysis. Nor should I have been. We would learn in the months ahead that the dangers of hemodialysis are real and that one uneventful treatment does not garauntee the same for the next one. I will never not fear hemodialysis for my children but my first exposure to it certainly removed my deep phobia of it. My panic and dread of it was replaced with a much more appropriate caution and rational concern. There would always be risks but if Dr Funny could waltz in with his holiday cards, certainly I could handle this and did not need to be on the constant look out for disaster. It was clearly a success story for Exposure Therapy.