Dancin' a Cha Cha

Since Bill's embracing his Chi, I thought I'd do a Cha Cha - isn't that the dance where you go forward and back, forward and back with a few steps in between? It feels like the entire hospital stay has been a Cha Cha - we move forward, we move backward, we do a side step, then start moving forward, then move backward, you get the idea.

Well, today was one of those backward days. Mason awoke a couple of times in the night and again appeared to be having teething pain. He ended up needing only 2L at most, but then when he awoke for the day, his oxygen need started going up and up. As with the other days, he started off with a somewhat productive cough and wheezing. Unfortunately, he was also clearly agitated which didn't help his oxygen need. Only after some ibuprofen did he actually calm down some. His oxygen need stabilized at about 4L until the ibuprofen wore off. Unfortunately, it then went up again to 6L until another dose of ibuprofen and an extra dose of lasix.

So, once again, we were left with wracking our brains to figure out what could be going on...Could it be teething again? - maybe. Could it be the chloride level was too low so the lasix wasn't working as well as it should? - maybe. Could it be that the steroids messed with is fluid level? - maybe. Could it be that the pulse dose didn't work? - maybe. Could it be his upper airway is more affected than we thought? - maybe. Could it be that the effects of the TOBI haven't worn off yet? - maybe. Sometimes it just feels like we should have all of these choices on a spin wheel and let fate choose which one we focus on today. More than likely, it's probably a combination of many of these, so we attack from many angles -

• we give ibuprofen for the teething,
• we boost the potassium chloride to make the lasix more effective,
• we give more lasix to get whatever excess fluid there is off,
• we talk to the pulmonologist about the upper airway (again - but, then it is a new pulmonologist this week), and
• we talk about what effects they were hoping for with the pulse dose.

Man, I'm tired just looking at all the events of the day. It really was a long day, but in the end, Mason settled back down to 4L and was much more comfortable. We did spur some curiosity in the research for our lung doctor, so he's going to look up a few other things for us. We also found that he did not think that Mason would somehow get a ton better after this first pulse dose. He actually thinks that it will take many of these pulse doses before we see a big change in Mason's lungs. This was just the first step in that dance. It was encouraging to hear that he wasn't worried about Mason not doing as well today as yesterday. It was also encouraging to hear that he thought it would take a few months before Mason was totally healed from his aspiration pneumonias that he had a couple of months ago. It means that this is not the best that he's going to get for a while. He will get better, we just have to have patience. Hmmm...I think that's a theme we keep coming back to. You'd think we'd have learned our lesson by now...