02/19/10 More NICU

It's been a tough week and Friday couldn't have come at a better time. The results from the sleep study are back and as I arrive at the hospital from work one of the pulmonologists is starting to explain the findings.

When it comes to sleep studies there is an accepted "norm" for the number of apnea episodes a person can have "per hour". A normal person with no sleep apnea may have 1 or 2 pauses in their breathing every hour for a few seconds with no disruption of sleep. As the pulmonologist continued to explain, when the number of events increases from 1 or 2 and starts to approach upward of 10 per hour the collective medical community starts to get a little "excited" (the bad excited) about the result. Well, Eli had 150+ events with no respiratory support. On regular nasal cannula oxygen Eli had 70+ events an hour. Worse yet, Eli pauses and stops breathing in excess of 10 seconds for some of these events. The only good news to come out of the sleep study was they didn't find any evidence of seizure activity.

So what exactly does all this mean? Eli has what they call mixed sleep apnea. Mixed sleep apnea is a combination of central sleep apnea and obstructive sleep apnea. Central sleep apnea occurs when the brain isn't sending the right signals to the body telling it to breathe appropriately during sleep. Obstructive sleep apnea happens when there is an "obstruction" blocking the airway preventing you from breathing normally. In Eli's case they think the central part has to do with his general underlying neurological condition. The obstructive part is more than likely caused by his weak muscle tone (hypotonia) which makes it harder for the diaphragm to operate since it doesn't have a rigid chest wall to work against and the soft tissues in the throat are more likely to collapse and obstruct Eli's breathing.

The news is a little difficult to take given what we've already been through this week but at least we can take some action and start to address Eli's respiratory problems. The pulmonologist starts telling us about the treatment options. We are going to put Eli on a high flow nasal cannula that will blow air into his nose and help stimulate and possibly regulate his breathing. The positive pressure from the high flow is supposed to help with the obstructions by keeping the airway open and they're hoping the air blowing in his nose will act as a stimulus to remind him that he needs to keep breathing while he sleeps.

If this doesn't work the next step would be to do a tracheostomy and we'd have to put Eli on a ventilator. Now I don't know about you but I'm not too keen on someone cutting a hole in my kid's throat. Everything I've been reading on-line suggests that you want to avoid this at all cost. I've also been reading about some scary diseases where you put your child on a ventilator and they never get off it again. Needless to say this wasn't the best day. Patricia left for home and I stayed at the hospital to hang out with Eli for the night.

Later in the evening my buddy Paul came to visit me. We're going to hang out and play some cards then go grab some dinner. After the rough week I need a little break.

Now it's time for a little blurb about Paul. Most people don't know my friend Paul, and those who do probably don't know him as well as I do. We've been friends for 25+ years. Deep down (way deep down) he's a pretty sensitive guy so things got a little emotional when he first saw Eli and I told him what was going on. To put things in perspective, I still remember when he called me last year and told me his father had a stroke. I'm man enough to admit I cried a few tears that night and Paul just kept trying to convince me it would be ok. Normally I'm a firm believer in the "guys don't cry for nothing club" but every once in a while something sneaks up on me and catches me off guard. Paul and his family were basically a second family to me growing up. I still call his Dad "Pop". When he hit me with the news out of the blue I kind of lost it. We visited his Dad in the hospital not long after that and I didn't shed a tear. If I'm emotionally prepared for something I can usually handle it. The funny thing is I swear I saw some water works from Paul that night but it was raining a little so it was hard to tell. Fast forward to tonight and I swear the same thing happened when he saw Eli and I told him what was going on but it was inside and it wasn't raining. It turns out I'm blessed with amazing friends.

After we got through the hard stuff we ran out and grab a pizza from Pagliacci's and brought it back to the room. We were just sitting down to eat when the nurse comes in and tells me we're going to be moving back up to the NICU. Huh? I think I missed something because she just told me Eli needed to move back to the NICU...tonight.

It turns out that this high flow nasal cannula they are going to set Eli up on requires a stepped up level of care and support and by way of hospital protocol they couldn't start high flow oxygen on the floor. In a twisted way it made sense. If you're child requires high flow oxygen then they need "intensive care" by definition. Even though they have patients on the regular floor who are on high flow they can't start Eli on it so we have to pack up and move back to the NICU.

Paul had to leave at 8:00pm when visiting hours were over and I got busy pack up all the stuff we brought down to the floor with us. We had basically moved in! I called Patricia and asked her to come down to the hospital to help me figure out what was going on. She arrived at the hospital about an hour later. My Mom came over to watch the boys. We got settled into the NICU, got a sleeper room, and spend the rest of the evening trying to figure out why this was happening to us.