Getting moved to less private rooms always felt like a good step forward. When Charlie moved to his first room with a window, we were in a normal NICU pod. We were moving closer to home! However, Charlie's first two nights in his new room were rough. He started to have high carbon dioxide levels and they had to increase his ventilator settings. This helped a little, but one night he had to be paralyzed. This made it so Charlie wasn't fighting against the machines and he could get into a more stable spot. For some reason, paralyzing him has given him a chance to "reset" and he generally recovers. At this point, we were fighting everyday against agitation. His agitation spells caused his oxygen to go down and carbon dioxide to go up. For several weeks, we were in a standstill because every time a change was made he would get agitated and need to go back to the previous settings. It was frustrating.
At Children's Mercy, the doctors are divided into colored teams and the patients are split based on diagnosis (generally). For Charlie's entire admission, he was on the Pink Team. They specialized in acutely sick patient's. Since he was having so much trouble getting off the ventilator, he started to become more "chronic". For that reason, Charlie was transferred to the Red Team. They specialized in chronic patients, especially those with lung disease. I was scared to transfer to a new team. We knew our Pink Team doctors so well, and more importantly they knew everything about Charlie. But I was also very excited. I was excited for him to have some new eyes look at him and get some ideas on how to get him home. Our newest roommate was also on the Red Team. Once we met them and started talking, we realized our sons’ courses were very different, but had a lot of similarities. They were both intubated for a long period of time and struggled to come off. At this point in their journey, they were extubated and working towards going home. It gave me hope to see what the Red Team was able to do for them and they were also happy working with them. They were (and are) a family I look up to. They show up on the hardest days, advocate hard, and love so strongly. The days in the NICU are tough and you really only understand if you've been there, so it was nice to talk to people who truly got it.
The first days on the Red Team proved to be a big change. The first day they started making a lot of changes. It was such a breath of fresh air. For what felt like weeks, we were at a standstill and not making many changes and in one day they did a lot. There was a lot of ventilator changes. Previously they had discussed waiting to start decreasing his pulmonary hypertension medication (Remodulin) until he was extubated, but they also slowly started taking that away. It was good to see progress, but there were still a lot of hard moments. The very first day on Red Team I was holding Charlie, which we did nearly every day. Just before it was time to put him back in bed, he had a meltdown. Charlie wouldn't stop crying and his oxygen was dropping. He also started squirming and trying to turn his head, and he turned his head just right to kink his breathing tube. His nurse was standing next to me trying to help, but once he wasn't getting oxygen his vitals started dropping fast. She yelled for help. Being a nurse, I panicked. Yelling for help means it's bad, and I definitely had some PTSD from situations when I yelled for help with dying patients. My anxiety raced and I started crying. I looked at Zach and he looked at me and tried to calm me down. He grounded me. Panicking was only going to make things worse because Charlie could sense me. Multiple people including the nurse practitioners, staff nurses, and respiratory therapists came quickly and were able to safely get him into bed. He was safe, but I became really anxious every time I held him. It took me quite awhile before I felt comfortable holding him and didn't worry the entire time.
That same week, we found out a few things. One thing was that Charlies was positive for a gene called ABCA3 but was only a carrier. This gene affects the body's ability to produce surfactant, something that helps keep air sacs of the lungs open. The genetic counselors said since he was only a carrier he wouldn't have any symptoms. But there were some cases where they did have mild symptoms. They could also tell that the gene came from me. I felt so much guilt already about my body failing to grow him properly, and now I gave him a gene that could be causing some of his issues (but we've now found out is not an issue for him). It hurt a lot, and I still have a lot of guilt that I'm working through. And I know if I had any choice in it, I would give him nothing but a healthy body and happy life, but we don't get to choose those things. We also found out that the team was fairly certain he had tracheobronchomalacia. This means that his airway collapses, especially when crying or bearing down- like with pooping. It seemed like that was likely, given any time he would cry or poop his oxygen would tank. To solve this they increased the pressure on his ventilator during these episodes. The thought was that the increased pressure would help keep the airway open and keep his oxygen levels more stable. It did seem to help and he was able to recover faster during the episodes. The last bombshell we found out was that it wouldn't be a few weeks to get extubated and then work to going home- it would be months. And Charlie could even quite possibly still be in the hospital at his first birthday. This was devastating. What we had thought would be a 6-12 week hospital admission was turning into a nightmare. Obviously we were going to do whatever we had to for Charlie to be healthy, but I also wanted him to have a normal life. And that was not happening in the hospital. But if that's what he needed, we would show up and support him through every moment.
Through every moment, I still tried to find the positive. Everyday I write down the medical changes as well as anything positive that happened that day. This is mostly who held Charlie that day, visitors, books read, funny things, and personal accomplishments. During this time, Charlie turned 2 months old. He was 9 pounds 3 ounces and 20 inches long. He was really starting to grow. Charlies was starting to do some developmental activities- he was lifting his head, reaching to play with his toys, and tracking better every day. We had so much love and support surrounding our small family, we had to look at the good things because they were everywhere.
As quickly as we got comfortable in our new room, it was time to move again. Charlie was working on decreasing his sedatives and was having withdrawal. He became very sensitive to sound, so was moved to a quieter room. We were very sad to leave our roommate we had bonded with, but we often walked by their room to check in. And then the day came that everyone looks forward to- they got to discharge. We were sad to see them go, but it was the happiest goodbye. Thankfully staying in contact is easier than ever, so we still support each other even at a distance. We knew our day would come- and luckily our new room still had a window.
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