Here, CT, CT

So, apparently, Bill and I know what we're talking about to a certain extent. But, I'll get to the gloating in a bit...

Mason started his antibiotics for the possible colonization or infection last night. So far, he's tolerating both types well without any side effects. Unfortunately, antibiotics take a few days to show any improvement, so Mason's oxygen need continued to go up today - needing 6L most of the day. Despite his lungs not sounding worse, his oxygen need continues to go up.

The attending pediatrician came and talked to me earlier than usual this morning. It appears that she was listening when Bill and I said that there was a definite difference in medication/food/sodium/etc, when Mason was doing well and now. She thought about what we had said and decided to start investigating further. So, she went back and looked at his medications for the entire length of stay. She noted a few things we mentioned including the steroid level back when he was doing well, the antibiotics he was on then, and the fact that we might be masking an infection now. Seems Bill and I were on to something with the first 2 points. Mason does better on the steroids..........

One thing we didn't think much about was helping Mason cope with his teething over the last couple of weeks. Because he has so much to deal with on a regular basis, we thought we would help him with Tylenol and ibuprofen pretty much around the clock. Unfortunately, both of these can mask a fever very well, so we haven't had a chance to see if he was fighting an infection. So, we've held the pain relievers and she ordered a bunch of tests to make sure that Mason was doing ok. The good news is that his white blood cell count is just fine, indicating that he isn't actively fighting anything in his system. We'll have to wait a few days before finding out the results of some of the other tests, but we are feeling pretty sure that he isn't sick with a systemic infection.

The big news of the day led to a major change in the steroid management. We've been talking about doing a CT scan for more than a year. The pulmonologists have always said, well, we would have to sedate Mason completely, and we wouldn't really change anything regardless of the results. So, it was never worth it. Then, something happened, we (Bill, I, and the pediatrician teams) started pushing and they started thinking outside the box. Yesterday, the attending pulmonologist suggested doing the CT without sedation - just try and see if Mason could lie still long enough to get an idea of what his lungs look like. Bill and I laughed when the idea was brought to us - right, keep a 20 month old lying still for 15 minutes or so. That's funny!! I never would have believed it could be done, but somehow, someway, Mason laid still enough that we were able to do it. He was amazing!

So, when the CT results came back, it was worse than the attending pediatrician thought, but exactly what we expected...Mason's lungs are really bad. He has significant lung disease - no shock to us. The good news was that he didn't show any evidence of a frank infection or pneumonia. There were some areas that might be some bacteria, but nothing that is collected in 1 spot. We will continue with the antibiotics to treat anything that might be there to prevent it from causing a pneumonia later on. Good news!

The results also led the pulmonologists to suggest another course of action - different from the trach and vent. We are on board with the suggestion and will start the new treatment tomorrow. Mason will be getting extremely high doses of steroid via IV for 3 days (30 mg/kg/day for those of you keeping track). Presumably, after 3 days, his lungs will have significantly reduced inflammation which will allow them to function better for a period of time - hopefully a month. He will go back on his "maintenance dose" of steroids after the 3 day pulse dose to make sure that we don't shock his system (you might remember that he is "addicted" to the steroids because his body doesn't make any of it's own). He can repeat this cycle monthly for quite some time and hopefully will see some improvement. They have done this treatment with other kids and apparently it can be effective to allow the lungs to grow better than if he was on a chronically high dose of steroids (he hasn't been off of steroids since last fall). We will hopefully be working closely with the endocrinologist (hormone doctor) to make sure that we are doing everything safely.

Bill and I are happy with Plan S (I'm pretty sure we've already tried plans A-R during this hospitalization). It makes sense to us, seems to be a true hybrid of all the things we've talked about (somewhat restricted fluid, more diuretics, antibiotics, and steroids), but more aggressive than any of the other plans separately. We know Mason's lungs are really bad, we know that it will take a lot of time for him to grow out of this, we know that he will probably always have breathing trouble of some sort (probably asthma at the very least), but we need to do everything in our power to help him get through this difficult time so that he knows there's a light at the end of this lung disease tunnel!

Please say an extra prayer tonight that the attempt to start an IV goes well tomorrow! If all goes well, it might save a few more pokes in the future, too!!