The Hospital - Our 2nd Home

Hard to believe that for half of Will's life he's been living in a hospital. This is not how any of us thought this little guy would start off life.

On Sunday night Will had another "blue spell" where he stopped breathing while feeding for 45 seconds. This is the 2nd time one of these long spells has happened. We monitored him very closely for the rest of the night and even called our surgeon that night to ask if we should go into the emergency room. He said that we should be ok to wait to see him the next morning. We were admitted to the pediatric hospital after our appointment to have some tests done to try to detemine Will's blue spells.

Over the week we met several times with a pediatric pulmologist, our pediatrician, our surgeon, and a speech therapist. Will had a pneumogram done one night. The pneumogram monitored his breathing throughout the night. This came back showing no signs of apnea spells during the night.

The next test Will had done was a Bronchoscopy. The procedure had to be done under general anesthesia where our surgeon and the pulmologist used scopes to look down Will's trachea. The procedure came back with some answers, but not the answers we were hoping for. The bronch showed Will's tracheomalacia much worse than what we thought. Tracheomalcia is very common in TEF patients; however Will has a much more severe case. The top of Will's trachea is very floppy and is not rigid enough to stay open. The cartlidge did not develop well in the uterus. This explains his blue spells.

Will was born with Esophageal Atresia and a Tacheoesphogelia Fistula (TEF). It means that the top part of his esophagus ended in a blind pouch and the bottom part of his esophagus was connected to his trachea instead of to the top part of the esophagus. This was fixed in his first surgery two days after birth. The problem is the top part of his esophagus is much bigger than normal which causes two problems. One is the milk that he drinks pools in the top part, the pouch, and pushes on his trachea where his tracheomalacia is, collapsing his airway. The other problem is that the connection where his esophagus was fixed is narrow, also causing milk to pool in the pouch, which in turn pushes on his airway.

There were a few options for us and all included surgery. The least invasive surgery was having a feeding tube inserted into Will's stomach. This way the majority of Will's feedings would bypass his esophagus giving his esophagus time to shrink that pouch and time for his trachea to develop and get stronger. Most kids with tracheomalcia grow out of it as they get bigger and their body matures. Will is also going to need to have his esophagus dilated periodically where it is narrow. This should help things move through faster and also help shrink his pouch.

The surgery was done on Saturday and went well. Feedings started today and are going good. On Monday we will learn how the feeding tube works, how the sleep apnea monitor works and how to use an oxygen bag and mask if Will would ever have another one of the long blue spells at home.

We have a few big days ahead of us but we are hoping to be out of the hospital on Tuesday at the latest.