Same Game, New Players

Today was the day of change for Mason's providers. For some this may seem odd, but for us, its a "normal" part of Mason's hospitalizations. The physicians Mason has worked with change every Monday because they do 7 day coverage - Monday to Sunday. So, we have a new attending pediatrician (someone we've worked with before at another hospitalization) and a new pulmonologist (thankfully, it's Mason's usual lung doctor). Although both have been in the picture before, it still takes them a day, maybe longer, to get caught up on what's been happening. In other words, not much happened today.

Thankfully, Mason did come down on his oxygen need again today. This morning, he only went up to 5L, but was back to 4L by midday. Tonight he's once again down at 2.5L, so we know we're on a good path.

We talked for quite a while to the pediatrician tonight about the tube feeding. Apparently, the surgeon isn't real keen on a feeding tube that goes from the stomach to the intestine, but we haven't been able to really clearly ask why he prefers the tubes that go through the nose into the intestine (which is what Mason had last fall). We have more questions that need to be answered before starting the feeding straight into the intestine. Thus, no tube was placed today. Unfortunately, the IV finally failed early this afternoon. We tried to have another one placed, but after 3 tries and 3 more blown veins, there were no more veins to try -- Mason can't have another IV. So, we're left with 2 options (one of which wasn't really an option) -

1. A PICC line which is a long tube inserted into one of Mason's remaining veins and threads through closer to the heart. This would allow us to continue to give him IV fluids and a spot for the multiple blood draws. The down side is that Mason would have to be sedated for the insertion. This may still be an option tomorrow, but unfortunately, by the time we talked about all of this, the PICC nurses had left for the day.
2. Re-starting the tube feeding into Mason's stomach. If Mason is really aspirating, this is not a good option. He's been making good progress, and this could possibly set him back. There's no good way to tell tonight, so without another viable option, this is what we elected to do.

So, we will continue to watch Mason carefully over the next day or 2. If he worsens, we know the food is the culprit. We are also going to get a "nuclear medicine" study in which we put some radioactive dye in his stomach and take xrays several hours later to see if any of it ended up in his lungs. This can help to confirm or rule out aspiration. As long as all parties agree to the validity of the results of this test, it can help us formulate a long term plan.

Then, once we get the food thing worked out, we'll be able to see how Mason's electrolytes look again. They'll want them stable for at least a couple of days before thinking about sending us home. It looks like we will continue to be here for at least the next several days, if not week. The good news is that hopefully we will get some definitive answers and come up with a long term strategy that will help us get through this winter relatively unscathed. Wishful thinking, maybe, but a girl can dream, can't she?