Heart of Beckett

UPDATE (10/25/18)

Today was a good day. Stable. Uneventful. Good. Beckett had a rough start to the morning when he woke up about 6am crying out in pain. Crying quickly turns to coughing, to more crying, more coughing, can’t catch his breath, oxygen dropping, getting bluer, and round and round we go. The nurse and I were trying everything to calm him and while he would settle for a brief moment it was short lived before the cycle started again. He was asking for his dad so I called him to come over as he is staying across the street in the Ronald McDonald house. Unfortunately we were not able to get him calmed down after about 40 minutes so they decided to give him morphine to ease his distress. It was perfect. So I guess it was a little eventful first thing but nothing after that. Beckett spent the day watching movies and goofing around with family. He was able to sit in the chair most of the time he was awake and took a three hour nap. His appetite is slowly returning. We even played one of his favorite games, Bingo, which he won.

So what are they saying? Beckett’s respiratory distress is being cause by a pneumonia in his right lung. He is getting IV antibiotics, special breathing treatments and being encouraged to cough as much as he can. All the tests that have been done concerning his heart have shown no change from his previous appointments. Great news. Unfortunately it seems we may have hit the perfect storm as far as why he got so sick. He may have had something brewing prior to surgery on Tuesday that was exacerbated by being intubated for surgery, compounded by his post op pain and therefore not breathing deeply, along with pain medication that further decreases your respiratory drive. Over time it looks like this led to decreased oxygen until his body finally gave out. Possibly. They can’t say for sure why he was “passing out”/turning so blue, and we may never know. While a pneumonia like this would make any child ill, it’s possible due to Beckett’s abnormal cardiac anatomy he just couldn’t fight it.

So now it’s a waiting game. Waiting to see how long it takes to fight off the infection. Waiting to see how long it takes to decrease his oxygen demands. He is on a high flow oxygen that is giving him a lot of support. We can’t leave the ICU and move to step down until that significantly decreases. Waiting to make sure he continues getting better rather than worse. We will be here at least a few more days. But, we would rather stay here as long as it takes than not have our son. So, we wait. A game with which we are all too familiar.

We can not say enough thanks for all the words of encouragement, prayers, texts, calls and even visits. It means more than you will ever know.