03/09/10 Pulmonary Meeting

We had a quiet and uneventful weekend. Eli is still stable and doing well on the CPAP. Monday was more of the same.

Today we have a meeting with pulmonary at 11:30am. During the meeting we discuss Eli's respiratory issues and his apnea. He is only having apnea during sleep and we think it's more prevalent during his deeper dream sleep. Eli has what they call mixed sleep apnea which is a combination of central sleep apnea and obstructive sleep apnea. They think the central sleep apnea is caused by Eli's brain forgetting to tell his body to breathe. The obstructive sleep apnea is related to Eli's overall hypotonia. When Eli is in deep sleep he occasionally forgets to breathe for a few seconds. During the pause his muscles collapse a little and cause an obstruction. After a couple seconds his brain remembers that he should be breathing and his body tries to draw a breath but now it's obstructed so it takes a couple attempts to get it sorted out. In the meantime the oxygen level in his blood drops and he becomes desaturated.

The positive pressure from the CPAP helps Eli maintain his airway and it helps remind him that he needs to breathe regularly. So far he has been fairly stable on the CPAP but it's not a system we can take home on. It's not 100% clear to us why he can't go home on the CPAP other than the fact that CPAP is a higher level of respiratory support but we've been told that Eli could be on a BiPAP system at home. Of course the problem with BiPAP is they don't make a mask small enough for an infant. The smallest mask is about the size of a 3 or 4 month old. If Eli absolutely requires CPAP then it is likely we will have to stay in the NICU until Eli is old enough and big enough to fit the BiPAP mask.

Obviously the respiratory situation is the big question mark. Patricia and I have no desire to spend the next 2 or 3 months in the NICU at Seattle Children's and right now the pulmonologist has no idea what level of support Eli will need. Our plan is fairly straight forward. We are going to try to transition Eli over to high flow nasal cannula over the next week or two. If he remains stable; meaning his CO2 and bicarbonate levels remain at safe levels over the transition period, we will be able to move Eli to the regular floor and then home.