Groundhog's Day

It feels like we're in the movie. You know, the one with Bill Murray - the one in which he relives the same day over and over and over again. Well, that's where it seems we are.

Sorry I haven't posted in such a long time. We've been struggling with Mason's breathing since the last post on his 18 month birthday.

Lungs:
When last I wrote, we had just started a course of antibiotics for Mason's 2nd aspiration pneumonia. Unfortunately, that only worked while he was on the antiobiotic; a couple of days after the last dose, he was on his way to needing more oxygen again. So, we started a steroid burst (a huge increase in his normal dose with a drastic, quick decrease back to his normal dose). Again, it was effective while he was on the burst, but unfortunately, a couple of days after his last dose, his oxygen need went up again. We repeated the burst, with the same effect. Then, last week we tried a lasix injection (high powered diuretic to help decrease the amount of fluid on his lungs). Unfortunately, once again, this only helped temporarily. So, after a very rough night last night on a whole lot more oxygen (4.5L vs. his normal 1.5L while sleeping), we are back in the hospital hoping that the medical minds that have helped in the past can do it once again and help Mason get back to being "healthy."

Eating:
The good news of the last month is that we have a handle on Mason's spitting up (for now, anyway). We had a visit with the GI doctor at the end of September and ended up changing Mason's medications. With a significant increase in one and the addition of another, Mason has all but stopped spitting up. We are very thankful for this improvement as the aspiration from spitting up was what got us into this mess to begin with! Mason is tolerating his food much better and we're cleaning up fewer messes (can't beat that!).

Kidneys:
We had our first visit with Mason's nephrologist (kidney doctor) last week. We have known all along that Mason has needed to be on diuretics so that his lungs don't fill with fluid, and have known that long term use of diuretics is not without risk. Apparently, the doctors just wanted to do a little more looking at whether or not now was the right time to make changes because his chloride levels (one of the electrolytes in the body) have consistently been low over the last year and his carbon dioxide level has consistently been high -- 2 bad things for the kidneys. We want to make sure he gets what he needs, but not permanently damage the kidneys in the process. Always weighing the pros and the cons of everything we do for Mason.

Anyway, I'm pretty sure our appointment was only supposed to last 30 minutes at most, but we ended up spending 2 hours with the doctor. She gave us a ton of information that took quite a while to think through and we still have a lot of questions about what is the right thing to do and when.

We are hoping that during this hospital stay we can get a care conference together so that all of Mason's specialists can work together to come up with a plan that is safe and effective for him. It seems that they don't want to increase steroids, they don't want to increase diuretics, but he needs both of them (and in larger quantities as he gets bigger), so they just need to figure out what is the right thing to do (i.e. the one that will have the fewest consequences and the biggest benefit!!)

Hospitalization:
So, bringing us back to today -- it sure does feel like we were in the same place last year -- troubles with spitting up, reflux causing increased breathing problems, weighing the pros and cons of medications, wondering if Mason's going to need surgery again (at this point, hopefully not). We're either living out Groundhog's day or living like broken records...

Mason's set to have blood drawn and a chest xray today. Hopefully we will be closer to answers about how to help him by later this evening or tomorrow. I'll keep you posted.