Teddy's Story

Chapter 22: An Uncertain New Year

After Christmas, things started to seem like they were getting better. Teddy was doing better and better each day. The fluid coming out of his chest tube was getting less and less and his breathing was getting stronger and stronger. They had finally been able to wean him off of the high doses of morphine and on December 28th, they were able to take out the breathing tube and put him on high flow oxygen. This was a HUGE step and we were sooo excited! We all started to breathe a little easier. 

Around the same time, the chest tube stopped producing any fluid and they felt the lymphatic leak must have healed, so they removed the chest tube. While he still had an oxygen cannula on and an IV, Teddy was finally free! We could see his beautiful face and hold him without fear of causing damage. He was getting back to his bubbly self and we were so relieved and happy. They also started him back on breast milk and we were so hopeful he was heading back in the right direction.

By New Year’s Eve though, Teddy was starting to struggle again. His breathing was labored and he was showing more and more signs of discomfort. They ended up having to put him on high-flow oxygen (the green cannula), because his oxygen was dropping. They quickly took x-rays and ultrasounds and saw that the fluid was back. His lymphatic leak had either reopened or never healed. The fear came rushing back in. We knew this wasn’t a good sign. The doctor’s were confused, because it should have healed, but they were still hopeful it would all be okay. They immediately put back in a chest tube and thankfully the fluid started flowing again, but it had changed. It seemed thicker and more cloudy. They put him back on TPN and back we went into the waiting game. 

We were still hopeful, that this was just a minor setback and that it would still heal on its own, but the fact that the leak seemed to be worse, it was a sign that it was a much bigger leak than originally thought. I started googling, which we all know is the worst thing you can do, and the results were scary. I tried not to think about it, but Teddy seemed to be getting worse. I was pumping constantly, but he wasn’t able to be fed any of it, which means he was not able to grow. Long term use of TPN can cause damage and at this point he had been on it for a month. It also meant that all that fluid was causing him to retain even more fluid that his single kidney was not able to successfully eliminate on its own.  

While they were always positive when we were around, you could tell the doctors and nurses were getting worried as well. Where they usually would talk about everything in front of us at rounds, their discussions got shorter when we were there and I would see them conferring out of earshot, which is something they had not done before. We had been excited to start the new year with Teddy finally in recovery, but now we were starting 2017 full of fear and confusion. We wanted our happy smiley baby back, but instead he was essentially chained to a NICU bed and always seemed a little distant or dazed. Our sweet amazing little boy, was now a very sick little boy.

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