The first three months of the kids being home from the NICU was intense in every way. It was difficult and tiring and it was exciting and joyful. Throughout those months, we were assuming that we were still in the initial adjustment phase and taking for granted that the coming months would see us settling into a routine and that the difficulties would start to fade into the background and the joys of being a family at home would increase. We enjoyed those three months, but we definitely lived them assuming easier days were ahead. Unfortunately, we were wrong in that assumption. Three months home from the NICU, right about when we thought things were going to start getting easy and routine, we ran into a huge obstacle that seemed to provoke a domino effect of impossible decisions, heartbreaking discoveries and never ending procedures and drama that would not settle down until Addie would be transplanted six months later. Knowing all we now do, I wish we had savored those three months more because on the Sunday after Thanksgiving, our world was about to get turned upside down. And it all started with a grunt.
Thanksgiving week itself was wonderful. Since Addie had come home the Sunday night before I started teaching, I had not really had any stretch of time home with the kids so I was counting down to that Thanksgiving week like never before. Nine days off in a row to just be with my babies and my family and to rest. We decided we needed a change in scenery from our gameroom hospital so we actually loaded up tons of medical supplies, all our theirs clothes and toys and 150 'Cell City' posters that I had big intentions of grading and we moved in with my parents for the week. They were living at Bethel, their huge dream home and there was tons of room there and it was just a great change of environment for us. The week was restful and fun and although not free of some hiccups, generally lived up to what I had envisioned.
The only significant issue that came up that week was that we met what we now refer to as 'The Picture Curse'. With us all being together and my brother being out as well, my mom had booked a professional photographer to come to their house and take photos. The babies had long missed out on newborn photo sessions and we were all excited to get some great photos of them and all of us together. The night before the photo shoot though, late in the evening, Al noticed that instead of draining clear fluid from his dialysis, Max was instead draining bright red Kool Aid looking fluid. We were terrified and drove him downtown to the ER at close to midnight. Several fun hours in the ER and it was determined that he had drained blood due to a problem with his heparin or blood thinner dosing. He seemed fine several hours later and we were on our way back home but all exhausted and Max had missed dialysis during the night so had to come home and spend the day hooked up to his machine so pictures had to be cancelled. It would be three more cancelled picture sessions before we would identify that planning family pictures is most clearly a curse!
Other than that, the week was uneventful and we were sad to pack back up on Sunday and head back home. We gathered all our equipment and the 150 Cell City posters that remained ungraded and headed home. I had noticed even the day before that Addie had seemed grumpier than normal. And Sunday morning she definitely did not seem like herself. Initially she just seemed fussy but as the day went on, she was no longer really fussing but just tired acting and not her smiling self. And then I heard it. She was grunting as she was breathing. I had to listen for a while to make sure that I was hearing it correctly and not just crazy paranoid imagining it. Ever since Addie had grunted while breathing during her heart failure, I had learned to fear hearing that sound come back. In the initial weeks after her heart failure, I actually thought I was losing my mind trying to strain my ears to make sure there was no hint of a grunt in her breath. But months had passed since then and I had stopped thinking it was about to come back. Until it did that Sunday.
I wasn't sure what to do so I sat Addie in my lap and used my iPhone to video her breathing and sent it to our dialysis nurse who passed it onto her doctor. Their biggest reaction was "Addie looks better than you do! You look completely stressed out and panicked!" They did agree that Addie seemed to be breathing heavy with some grunt but thought she was still active and alert so they had me check all her vitals- blood pressure, oxygen saturations, temperature- and when everything seemed fine, they told me she probably had some extra fluid on her so run her on high dialysis settings and then bring her in to the hospital once her treatment was done the next morning so they could check her out. Had we tried to take her in that night, we would have ended up in the ER for hours before getting a room and she would have missed important time on her dialysis machine so the plan made perfect sense.
If I had anything to do over again, I would not have gone to work the next morning. It was, and to this day still is, such a struggle to balance working with kids with major medical needs. And if I took off every time something seemed wrong, I don't think I would ever have worked those first couple of years. Addie was sleeping peacefully when I left and she wasn't set to come off her machine until about 10am, at which point my mom was going to take her down to the hospital to have them look at her. I figured I would work and leave right at 230 and meet them down there. Even though I had heard the grunting and was really worried about Addie, I clearly had no idea what was really going on or I would have stayed home with her and been there for that hospital trip.
My mom called me at my lunch break and said that they were on their way but Addie did not seem good to her. She and Al had both agreed that Addie seemed pale and like breathing was a struggle. I felt really awful then not being there but my mom assured me Addie was in good hands (which she was) and that she would keep me updated when they got there. So, despite feeling very anxious and upset, I taught the rest of the day. I had a few updates from my mom but not enough to really put together what was going on. As soon as my last group of students walked out the door, my mom said that the doctor wanted to talk to me and explain what was going on and asked me to call her.
I remember the scene far too well, standing in my classroom using my room phone by the door and talking to our wonderful kidney doctor Dr S who sounded shaken up and genuinely sad as she told me that Addie's oxygen saturations were too low (sitting in the 80s instead of upper 90s) and that when they listened to her, one of her lungs seemed to be collapsed by fluid surrounding it. She told me with emotion that she had admitted Addie straight to the Pediatric ICU and that she was going to have to have a chest tube placed in her lung to drain the fluid and we will go there. She recommended I get there as soon as possible and told me how sorry she was. I stood there talking to her with tears pouring down my face. I had no idea what was happening, none of us did yet, but I knew it was very bad and that I was scared to death. I defaulted to assuming something must be wrong with her heart again and felt so petrified of heading back down that road. Several of my co-workers had walked through to see me standing on the phone with the doctor crying so everyone was coming in and asking what they could do to help. My friend Shannon ended up driving me to the hospital so I didn't have to drive myself while my friend Eve went to my house to collect clothes and anything we needed from home to bring up to the hospital for us.
We arrived at the hospital and Addie was in the PICU on oxygen and it was so sad to see her like that. It was a long evening and night as we worked to get her stable and to get answers. Dr S explained that she had two main hypotheses for what was wrong: either she was in heart failure again, or she had a bad respiratory infection that was causing pneumonia. Both of those options sounded terrible. We needed to get the fluid out of her chest and then get bloodwork and a heart echocardiogram done. They gave her mild sedation and put a chest tube through the side of her chest into her chest cavity. The fluid drained out pretty quickly and within an hour, 400ml (more than a can of soft drink!) had drained out her chest. The most shocking part though was not even the amount of fluid... it was that is was absolutely clear. It looked nothing like any of the fluid you would expect to come off someone with an infection or heart trouble. It looked foreign, not like your own body's fluid would look like. When she saw it, our Dr S recognized immediately. Oh my goodness, I think that is dialysis sugar water coming out of her chest.
Every day we were putting clear sugar water into her abdomen, the peritoneal cavity that is a self contained space holding your digestive organs. Separating that area from the lungs are layers of tissue and a diaphragm. There should not be any reason at all for dialysis fluid to be anywhere but her belly. And yet when they run dextrose sugar tests on the fluid coming out of her chest, sure enough it was dialysis fluid surrounding her lungs and making her work hard to breathe.
I think a part of me was relieved by this news initially. It wasn't her heart!! And the echocardiogram the next morning would support that her heart seemed to be just fine. I was so grateful for that news that I was not sure what to make of the fact that it was instead a very confusing and serious dialysis complication. Addie started breathing easier and the grunting had stopped once the fluid had been drained so as I made my little cot bed up that night in her room in the PICU, I had calmed down a lot from how upset I had been earlier in the day. I figured she had some dialysis issue that they would be able to figure out and fix and everything would be fine.
While I slept on my cot that night in my ignorant relief, it was a long night for Addie's doctors who were frantically researching what was going on with her. By the time we woke up early the next morning, they had discovered that there are only three documented cases of this complication happening to someone on dialysis and they were all adults. There was not a single case they could find of a child on dialysis ending up with fluid in their chest. Turns out my sweet girl was truly one in a bazillion. And it turns out in this case, that was NOT a good thing. That day meant meeting with a lot of doctors trying to work out a plan for her. We debated surgery, we debated hemodialysis and we talked a lot about how very unsure we were of what would end up working for her.
I wish this was a short story that I could now neatly wrap up but that Monday was but the beginning of a three week PICU stay that would include two surgeries and a transition to Hemodialysis. Life for Addie and for our family would never be the same again after that and the happy ending to this story is months away in a new hospital PICU room in California. In the meantime, there are more stories to be told, more challenges to endure, and more evidence that my little girl is a complete miracle.
And so just like that, with a grunt, our three months of having the babies home and adjusting to a lovely life at home together came to a crashing halt and we were thrown onto a whole new crazy rollercoaster...