Teddy's Story

Chapter 19: We Thought We Were Prepared

To be honest, I have struggled to start writing the next part of Teddy’s story. It was such a hard time and I can’t quite seem to get all the pieces straight in my head. Everything was so stressful and just a rollercoaster, that in the moment, time both seemed to stand still and speed by like a flash of light. I think I honestly tried to block out the details, because looking back I was so overwhelmed. I was frustrated, scared, exhausted, and also felt guilty and so desperate all at the same time. I will try to explain these emotions as I write his story. I tried my best to hide all of this at the time and just be there, in the moment with Teddy, but I know I did not successfully pull that off and it has had lasting effects on me. So as I write the next several chapters, please bear with me. Everything was so complex and hard to explain. So many things were happening at the same time that it was a blur. I will do my best to try and explain it as clearly as possible, but I am not sure I truly understood it all then or now. I truly cannot remember some of the things that happened or the exact order they happened in, but I 100% remember how Teddy once again overcame the impossible and showed the doctors exactly what he was made of. 

When they decided to start weaning Teddy off of the medications, we were ready. We were so ready to hear his sweet voice, see his spunky personality, and finally get to hold him again. We were also ready for the withdrawals he was going to experience. At least we thought we were ready. The doctors had prepared us for what to expect, but more importantly other parents had told us exactly what to expect. While you wouldn’t necessarily expect cutting back on medication would be a hard thing to do, since he had only been on them for a month, but he was tiny, only 8 pounds, and had been on high doses of multiple medications, including morphine for a month and his body essentially became reliant on them or kind of “addicted.” So our tiny baby would have to go through withdrawals, just like you I would if we had become addicted. We knew this going into the surgery and knew it was necessary for him to have the best success at a successful reconnection surgery. All the parents told us that while seeing them sedated and paralyzed was agonizing, watching them wean off the medications was the hardest part. Thankfully, it would only last about a week and then we would have our adorable little boy back, with a shiny new esophagus and no tubes or lines! We would finally be able to hold our baby again, just in time for Christmas!

So we all prepared ourselves for a rough few days and they started to slowly wean him off the medication. A few important things to note that are necessary to explain everything that happened. After they determined that Teddy’s esophagus was not leaking, they started him back on milk through his g-tube. This was a great sign and would help him recover even faster. Teddy still had his breathing tube, because the medications were making his body so relaxed they were essentially making it harder to breathe, but after he was weaned, they would be able to take out his breathing tube. One other thing to mention here, because it becomes very important, is that after Teddy’s surgery he had two chest tubes, which were allowing fluid in his pleural cavity (essentially the space around his lungs) to drain. It is common for fluid to be in these areas after thoracic surgery, because the body responds to trauma with fluid (like your ankle swelling up), so surgery can result in fluid building up. Since fluid in your pleural cavity can cause your lungs to collapse, if there is too much of it causing pressure, you will always have a chest tube placed after any surgery taking place in that area. Teddy’s surgical wounds were healing extremely well and he had no leaks in his esophagus, so since there was no fluid draining out of the tubes they pulled both of his chest tubes, prior to weaning him off the medicine, which would be one less thing to cause irritation as he continued to wake up. While he still had his central line, a PICC line, IV, and his breathing tube, the chest tubes were gone and the rest would come out after he was successfully weaned. 

As we expected, as they started to wean the medication, he started showing signs of withdrawals. In between doses, he was irritable and upset. You could tell he was uncomfortable. His heart rate was high and he was sweating more. His breathing would get more labored and it would be heartbreaking to watch. The doctors and nurses would try to decide if they could keep going down on the doses or if they needed to go back up slightly and give him longer before they decreased again. Other parents had told us they regretted going back up on doses or staying longer on doses, because it had just drawn out the withdrawal symptoms longer. They said that while it was painful to watch, it was so much faster when they just did a slow and steady withdrawal, instead of the back and forth. So that is what we pushed for. To continue a slow decrease, rather than an up and down with the doses. And this is where I feel terribly guilty every time I think about it and I start to feel sick to my stomach. Teddy was struggling so much, but they said it was the withdrawals and he would be better once it was out of his system, so we kept advocating for them to continue to wean, instead of going back up on the medicines. We kept questioning why he seemed to be getting worse, his breathing was getting worse, the lower the doses got and the nurses started to get worried. They wanted to go back up, but also kept saying it was just the withdrawals and he needed more time. We just wanted him off the medicine, so he would get better, but our baby was struggling so much. We were all worried and they had no idea why he was struggling so much more than he should have been.

We had planned for a few rough days of weaning, but instead our baby was really struggling and we were so worried. One of Teddy’s night nurses finally said that this isn’t normal and they started doing tests to figure out why Teddy seemed to be getting worse rather than better. I am so grateful for her. I honestly do not remember her name, she was not one of his primary nurses, which I hate that I have forgotten, but she basically looked at us and said we needed to go back up on his medications and figure out what was wrong. He was deteriorating rapidly and this wasn’t just withdrawals. They started doing chest x-rays, ultrasounds, and scopes and found that his chest was full of fluid and his lung had collapsed. No one knew why, but he immediately got a new chest tube and they started running tests as to why he had fluid building up. We were terrified because they had no idea what was happening. You can prepare yourself for surgeries and potential associated complications, but I do not think you can ever prepare yourself for your child getting sicker and sicker and the doctors not knowing why or when they do find the reason, not knowing if they can fix it. This was the first time we heard the “you have a very sick little boy,” which we would hear on repeat for the next month and even now writing the words makes my anxiety start to build.

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