We are home, exhausted, and we successfully traveled with Sam! I don’t know if I’m quite ready to travel with him for fun, but I’ll get there.
Do you want to hear the good news or bad news first? I’d love to tell you there isn’t any bad news, but then I’d be lying.
On Tuesday, Sam was put under for a chest CT scan. He bounced back quickly from the anesthesia like normal. Later in the day we met with a pulmonologist and a gastroenterologist. The pulmonologist had a few areas of concern from the CT scan. She reassured us, she would look further into her concerns when she was able to see better with a scope the next day. Both doctors asked a lot questions, gathering even more information than they had already received from Sam’s docs at home.
On Wednesday, Sam had a triple scope. Skip this next part of you don’t care what a triple scope is.
The scopes/OR procedure we will do are called a flexible bronchoscopy (bronch), MLB (microlaryngoscopy bronchoscopy) and EGD (esophagograstroduodenoscopy). We often refer to this as triple scopes. The bronch is with pulmonary and the physician uses a small flexible tube with a camera on the end to examine the upper airway, with a primary focus on the lungs. The MLB is with ENT using a small rigid instrument with a camera on the end to examine the upper airway to the level of the carina (which is where the lungs branch of left and right). The EGD is GI’s scope where they use a small tube with a camera on the end to examine the esophagus (throat), into the stomach, and the top part of the small intestine called the duodenum.
Sam had a harder recovery, but was put under the day before and had a lot more done with the scopes. They also dilated two parts of his esophagus. He bounced back by the end of the day.
After the scopes and dilations were done, the ENT, pulmonologist, and gastroenterologist came out to give us A LOT of information. Some old news and some new. We didn’t get the hopeful news we were expecting, and we learned things about Sam we had never known before. I wish I could say the new stuff was good, but it wasn’t.
We know Sam’s trach is not coming out anytime soon and we will be making several more trips to Cincinnati.
When we left the hospital on Monday, we left thinking Sam’s trach would never come out. It’s not the end of the world, but it is a bummer when that was our expectation.
On Wednesday, after Sam’s scopes, the same doctor from Monday gave us a little more hope. I kept asking him if there was a chance the trach could come out someday. He gave the same gentle response each time, “We have a lot of work to do before we get there.”
We prayed for answers and I would say we certainly got many.
We were definitely at the right place. Sam’s perfect imperfections are their specialty, no doubt.
Is this hard? Yes, but there are tougher things in life. At the end of the day, we have a little boy who is well worth it all. Through it all, he continues to amaze us, and everyone around him, with his strength, courage, and so much more.
The team of doctors will meet this week to discuss a plan for Sam based on his history and their own findings. We will wait patiently to see what the next steps will be.