Up in the Air

Three days at home.
Dang.

The issue is with Fin's breathing again. He's happy and doing great while he's awake, but as soon as he goes to sleep, the trouble starts. His bronchioles get plugged with mucous and that causes him to work overtime to breathe. The first night at home was fine but the second and third were spent making sure he was getting air. Sometimes, he wasn't. So we took him to the emergency room at 3 am on Sunday.

No one is sure exactly why this happened. One of the doctors said it looked like an asthmatic event, which we sort of expect due to his chronic lung disease. Many people have suggested allergens or irritants in our home air. It could be time to take a serious look at changes in our house. One of the main things we can do is lower the number of pets. This makes the most sense, but it's a hard decision to make, for many reasons. The girls don't want to lose their cats. I don't think we could possibly part with our dog. Part-time, trial-basis relocation of the animals is a possibility. We just aren't sure. For now, we have HEPA filters in two rooms and have replaced the carpet in the living room with a new floor.

After Fin was admitted to PICU, they started doing blood work and respiratory viral tests. The CO2 level in his blood was 117. It should be around 40. They put him on constant nebulizers and he started to look better. He was awake, clapping his hands, and having a grand old time. The doctor whipped out his camera phone and took a picture. He couldn't believe a kid with a CO2 level that high could possibly be laughing and enjoying himself. He wanted to document the moment to confound his medical students. By lunchtime, Fin's heart rate was normal and his CO2 had dropped to 59.

So he went to bed and we went home. In the morning, he was working to get air again and his CO2 level started to climb. He had another rough night trying to breathe and plugging up. His lung X-Ray looked better but he was all junky and wet with thick mucous secretions. They suctioned him constantly and put him back in his little nebulizer tent, this time at a higher dose of medication. He slept fitfully in there, struggling with everything from his chest PT to his medication. Everything indicated that he was fighting something, his CO2 level, bone marrow, heart rate, all the numbers were off. And again, when he woke up, he was happy, smiling, laughing, saying "Dadda". He had a bath and Jess dressed him while they continued to suck yellow junk out of his airway. The kid must really like the hospital or hate his parents, I don't know which. Either way, we need help! Fin needs help! He needs to breathe and sleep!

Fin's Surgery

Phineas had surgery yesterday, May 6th, to reverse his ileostomy and reconnect his small intestine. Everything went well. He looked great before he went into the procedure at 1:30 in the afternoon and he looked great when we saw him back in his room at 6:00 in the evening. He was intubated during the operation but when we saw him, there was no breathing tube, and he was doing fine on his own. The doctor said all the internal tissue looked good and clearing the old scar tissue was the most time-consuming part. But he used the same incision as before and Fin tolerated the whole thing very well.

The only down side is that they were unable to save the ileocecal valve. This is a small sphincter muscle that regulates the flow between the small and large intestine. Without it, Fin will have some digestive issues as he grows and the possibility of bacterial overgrowth and backflow from the large intestine into the small. These things are manageable, but not ideal. We are a little bummed about it, but considering all Fin has been through, it seems a small price to pay.

The next steps are bowel rest for a few days, pain regulation, fever watch, and making sure he's happy and comfy. Phineas is a real trooper and despite the numerous challenges in his ten months of life, he continues to improve. We are so glad he has the fighter's spirit. It has certainly helped him so far!