During Addie's post Thanksgiving hospital admission, I described living up at the hospital like having chronic jet lag. All concept of night and day dissolves when you have nurses and doctors who work night shifts and when you have a child who is not only going to have medical dramas during respectable waking hours. It was a completely typical night when a doctor would wake me up at 2am to ask me a random question about their medical history. It also had that blurred confusion feeling that I always associate with jet lag. The feeling of not being entirely sure where you are or what is going on and like the world around you is moving faster than your mind can work itself around. Looking back on that three week hospitalization, I still feel the fatigue and confusion. It is still difficult to put words to the highs and lows that happened constantly, at all hours of the day. More than any other phase or any other hospital stay, this one tested the limits of my physical strength and intellectual capacity.
Twelve hours after Addie first arrived at the hospital, she was sleeping with a chest tube in place constantly draining clear dialysis fluid from her chest into a white plastic collection container that doctors and nurses would come stare at every few minutes with serious pensive faces. She had a canula giving her oxygen since her flooded chest was making breathing more challenging. Her dialysis had been turned off to limit new fluid entering her chest so as a result her food had been watered down and significantly reduced. Exhausted from working so hard to breathe recently, she was sleeping oblivious to the concerned faces gathering around her bed all night and the hushed voices trying to work out a plan. No one really knew how to procede because no one had seen this complication before. They had no precedence to look to for direction. So they continued to stare of the box collecting fluid and grimace and sigh a lot. Laying on the couch in the room, it was nearly impossible to sleep myself as I was trying to make sense of their mutters and raised eyebrows.
A few short hours later and the day doctors came on and formulated a plan. Initially it had seemed inevitable that Addie would need to start hemodialysis, the form of dialysis that removed blood from the body and filters it through a large machine before returning it. Because of her very small size, the risks associated with this were terrifying. Such that every time a doctor mentioned the word 'hemodialysis' I envisioned a big terrifying black cloud of doom entering the room and immediately darkening the conversation with fear and dread. Raining down threats like 'seizures', 'multiple blood transfusions', 'infections', 'loss of ability to transplant', 'high mortality rate'. Any light in the room would be sucked out with just the mention of hemodialysis. So when the doctors came in Tuesday morning with a plan that would avoid hemo, I was all ears. The cardiovascular surgeon believed he could go in and find the source of the 'leak' that was allowing the fluid into her chest and remove the route for that to occur. He said it would involve a couple of weeks of recovery in the hospital but he thought she could stay on her peritoneal dialysis at very gentle low settings in the hospital with the chest tube in place in case any fluid did accumulate. Compared to what we had been fearing in the past few hours since this all erupted, this sounded like a great plan to us.
The next day, Addie was taken to surgery and it was the scariest surgery we had experienced in part because it involved her lungs but largely because the stakes seemed so high. If the surgeon could repair the area, she could eventually go home back on her machine and this whole disaster could be put behind us. If, however, he was not successful we all knew that the hemo black cloud would come storming in, terrifying us with its ominous risks. My mom and I sat there waiting for what seemed like an eternity for the surgeon to come talk to us. When he finally came out, he was smiling. He felt like the surgery was successful. He explained that he put staples in Addie's chest, closing off the area where the fluid had been accumulating. He stapled the outside of her lung to the wall of her chest cavity, removing any space for fluid to collect. He was happy with this outcome and presented us with pictures and a little baggie that had several example staples so we could see what was inside of her now.
It was a strange thing to be thrilled about but my mom and I were overjoyed with relief. We clutched our little baggie of staples and truly believed that those little pieces of metal were going to be the much needed solution to this nightmarish dilemma. We cheerfully passed on the news to our family and friends that Addie was going to be okay. And then we prepared ourselves for a reasonably lengthy hospital stay waiting for her to recover. But, we were okay with that because she was going to be just fine.
Over the course of the next week, we continued to grasp onto our hope even when her 'getting better' did not seem to be happening as quickly or as seemlessly as we had anticipated. The surgeon warned us that until everything was completely healed, we may still see some fluid collecting so when a couple of days after the surgery we start seeing the white box slowly filling up again, we tried not to panic. Once again the nights were marked with bright lights and concerned faces and staring at a fluid as if through sheer watching of it, we could all will that fluid to go away. Since she was still collecting fluid in her chest, we had to give her less and less dialysis which meant we consequently had to give her less and less food since we could not effectively clear waste.
Five days after her surgery, I tried to go back to work for a few days. I figured we were just waiting so I may as well try and conserve some of my time off for transplant or another drama down the road. I stayed the night at the hospital, left around 5 in the morning, taught during the day and then drove back out to the hospital. Every other night my mom would stay the night instead so I could have a break from the concerned stares and hospital buzz that continued all night long. I made it through four days back at work before I recognized I simply could not do that. I was far too exhausted and far too worried. The fact that Addie still did not seem better was weighing heavily on us and she was starting to become very weak and sick from the lack of food and the poor quality dialysis.
During this waiting phase, I really learned how incredible my daughter was. She was enduring awful circumstances, stuck in a hospital, being woken up at all hours for chest x-rays and to be stuck for blood. We were giving her barely enough food to survive on and a quick glance at her bloodwork and it was clear she was very sick inside. And yet if you saw Addie, you would never suspect as much. She would sit up and play. She rarely cried and was happy to sit on our laps or play with the new toys we were bringing in to try and cheer her up. She was often babbling and even smiling. She was in the ICU surrounded by extremely sick kids, many of whom were completely sedated and on ventilators and Addie was dressed in her Christmas attire, playing and even smiling at those who walked in. She was something of a celebrity in the PICU, nurses would come by just to see her and smile. Doctors would come in and comment that she must be doing better because of how good she looked only to get her bloodwork back and be taken aback to see how sick she still was. I learned in that phase that my daughter is absolutely the toughest, bravest person I will ever know. She has a strength and resilience I could only strive to match.
Ten days had passed since her surgery and nearly two weeks since she came in and the kidney doctor decided it was time to move forward and hope that she could handle it. Although she had been draining some fluid still, it was far less so he was hopeful that if we clamp the chest tube and then soon after remove it, she would be fine without it. He really felt like she needed some proper dialysis and proposed we put her back on her machine so she could get better clearance and more food and start to feel better. And if she was on her machine and not requiring the nurses to perform the slower dialysis, she could also leave the ICU. So after 10 days of just sitting and watching and waiting, it was decided that we would now change everything at once. We would clamp the chest tube in preparation to remove it soon, move her from the ICU to a normal room and put her back on her machine. If it went smoothly, she could be heading home in a couple of days.
We were nervous about all the changes but more excited than anything else. We were impatient with waiting and so ready to get Addie back home so we felt cautiously optimistic that Saturday evening as we set up her machine and waited. It was all very bizarrely timed that after days of doing nothing, we were now making all these changes at 9pm on a Saturday night but there we were. Al and Max came up and wished Addie luck and then she and I settled in for the evening. One of our old NICU nurses came up to visit us after her shift and she and I were chatting when it all very quickly went wrong. It started with her machine beeping and alarming angrily. It was claiming it could not seem to drain the fluid back out of her abdomen. I was stressing over the machine trying to figure out what was wrong with it when Addie starts fussing and getting really irritable. Then we notice that Addie's shirt is soaking wet. The chest tube itself is clamped so it cannot remove the fluid which seemed to have quickly moved to her chest so instead the water is just pouring out of her skin around the chest tube. I stood there horrified by the machine yelling at me while my baby girl's chest had been turned into a geyser and I am stuck on a Saturday night with no normal doctors around and out of the PICU with a normal nurse looking shocked and panicked with no idea how to handle this. I was so thankful Lori our NICU friend was there keeping me calm and helping to soothe Addie while i had to contact our kidney doctors and try and problem shoot this disaster.
Within a couple of hours, the machine had been turned back off. We had changed about 10 dressings and tops over her leaking chest and cut her food back. My mom had driven down to be with us and we sat there late that night completely discouraged. Two weeks into this awful hospital stay and we had made no discernible progress. Our sweet girl had endured a major surgery and weeks without real nutrition and it seemed we had very little to show for it. I don't think we had ever felt quite the same level of defeat as we did that night. It seemed like an eternity had passed since we enthusiastically clutched to our bag of staples and believed everything was going to be okay.
With the benefit of hindsight, I think that the two weeks of exhaustion and confusion was necessary in its own way. It was preparing our hearts to accept what was in store. Two weeks prior when they had mentioned hemodialysis I was filled with dread and determination to avoid it. I was convinced there had to be better alternatives. But sitting there that Saturday night confident that we had tried our very best and seeing firsthand how utterly unsuccessful we had been, my heart was already softening to moving towards hemodialysis. The two weeks of waiting, watching and feeling disappointment may have been exactly what we all needed to face what the next week had in store. It may have been the only way that when our doctor came in Monday and told us it was time for hemodialysis, we saw a rainbow instead of a black cloud.