Day 1 Post-Op

I got to be with Kaleb all morning and talked with pulmonology, his cardiologist, his nutrition team, and the respiratory tech about his procedure.

The consensus is it's a big deal that they found out about his tracheomalacia and bronchomalacia. This is an answer to a lot of questions and mysteries about his condition. It explains the prolonged "junkiness" of his lungs, his propensity to get sick and stay sick, his oxygen dependency, and the hazy appearance of his lungs on x-ray. It also helps cardiology to know that his oxygen deficiency doesn't look to be mainly caused by his heart failure.

They tried to extubate him this afternoon but he didn't do well with it, so they decided he just needs some more time (a theme with kaleb). While he is intubated, the nurses are able to send a tube down past his trachea and suck out the mucus that has been sitting in his lungs, presumably for months. They've been intermittently suctioning him all day and continue to pull out more secretions. So, they want to continue this to get his lungs as clear as they can before extubating again.

The first report from the bronchoscopy are that his trachea is 50% collapsed and the main bronchiole stem of his left lung is 30% collapsed when at rest and 100% collapsed when agitated. This is significant closure, as you may guess! One treatment the pulmonology team presented today was to try him out on C-PAP, which is an oxygen mask that provides continuous baseline air pressure, which would keep his left bronchiole open and would hopefully allow secretions to move out freely. If he tolerates that well, they may try putting him on C-PAP at night and see if he can tolerate no oxygen during the day, because they would love to increase his quality of life in that regard. We'll investigate these options once he's extubated.

His GJ tube site looks good and his body seems to be healing. When Todd and I saw him last night after surgery I just kept staring at his face wondering at how handsome he looked. It finally hit me that we are able to see his nose and more of his face now and it's so precious to see! It's hard to wait to see him awake (he's on sedatives) and without being intubated, but we know this lung clearance is really important so we are seeking to wait with patience.

• Pray for Kaleb to be able to rest and heal (he keeps waking up and getting upset about being intubated which causes his heart rate to rise and breathing rate to increase, which is not ideal for his body to heal)

• Pray for the pulmonology team to have wisdom in determining the path forward.

• Pray for patience for us as we wait for each next step, all the while missing having our joyful boy around at home.