Prepare for Takeoff

Things progressed fairly quickly after we found out about Charlie’s collapsing airway. We had a conference with the team and were told there was a big possibility Charlie would need a tracheostomy (more permanent airway) and that he would be in the hospital likely until his first birthday. This was heartbreaking. For the last few months ALL I wanted was for Charlie to be home. Hearing just how long his hospital stay was realistically going to be was hard. Going home every night with him was hard. It was so upsetting because I just wanted things to be normal. The team was comfortable trying to push Charlie over a few weeks to see if they would be able to decrease his settings enough to not need. We agreed, but it made every episode so much worse because we could see he was failing the trial.

Over the next few “trial” weeks, Charlie’s episodes were becoming more frequent. His oxygen was going lower and he was recovering slower. The ventilator changes that were once working weren’t nearly as effective. There were times his oxygen would get below 50% and he had to be removed from the ventilator and manually bagged by the respiratory therapist or nurse. Because of this, they decided to raise his PEEP back up to 15 and keep it there. This was really high, especially for a baby with CDH. But it was one of the only things that seemed to help at all.

With all the episodes, it was clear Charlie was not doing better and he was not growing out of his airway collapse. We knew at this point Children’s Mercy was out of options besides a trach, so we started to seek second opinions. We found a few hospitals in the country who had a specialized procedure to treat the airway collapse. Zach spent several days contacting their teams and setting up meetings. We had our first meeting with Johns Hopkins All Children’s Hospital in Florida. I had heard a lot about them because they are the only hospital with a CDH specific unit. It was comforting to know they had one of the best airway surgeons in the country, but also well versed in Charlie’s condition. Our meeting went well. We discussed with the Children’s Mercy team, and many of the doctor’s and nurses were extremely supportive. We LOVED Children’s, but we had to do what was best for Charlie. We knew if we didn’t take him to Florida for this, we would always ask “what if?” So once he was stable on his high PEEP, we didn’t make a lot of changes while w were waiting to transfer. We wanted to keep him in as healthy condition as we could to lessen any complications.

During the waiting process, Charlie grew. He surpassed 100 days, 4 months old, and more than doubled his birth weight! He was still loving bath time and found a new favorite thing, balloons. There was straps used to hold on his hospital band that we attached balloons to. He would have the balloons usually on his feet and kick away. He was so smart and learned that the harder he kicked the more the balloon moved. When he would get a really big kick he would look to us to make sure we saw it. And of course, he loved being held. Charlie would have “off” days where he wasn’t super sick, but he also wasn’t doing well. Those days he would be more fussy, but once we held him things would almost always improve. While we held him, we tried to sit him up more or do tummy time on us to help strengthen him. He even started sitting in a special chair when he worked with PT! He wasn’t sure at first, but soon enough he would nap in it. The last first in Missouri was his first tornado warning. Zach and I were both stuck at work. My stomach was in knots because I was so anxious. Luckily, things were safe and he just got moved a little more into the hallway and away from the window.

After a week or two, everything for the transfer to Florida was approved. We were excited and nervous. We just wanted the best for Charlie, and we really felt like this was his best shot.  He had SO many visitors come by his room to see him off, and he loved all the attention. The week before we left, he was so playful, happy, and smiley. I was so excited for his future and to get to a more normal life. Even if he had to be in the hospital, we were going to make the most of it by being with him, playing, and being involved in every way we could. It was amazing to see all the people who loved him and wished him well. The team made him a sign with his face on a plane that they all signed. It was hard to leave his home at Children’s Mercy and all the amazing people we had met, but we knew we would be back.

But, of course, the day he was scheduled to leave it was cancelled due to weather. The flight was rescheduled to the next day. We planned for Zach to ride with him and I would fly commercially and meet them at the hospital. My nerves were so high and I cried a lot when I left them. I had no idea how much things were going to change.