Communication is Key

We got hit with a major surprise today - and not a good one.

Mason's blood gas values haven't been good since we've been in the hospital this time around. Particularly, the doctors are worried about the amount of carbon dioxide he is retaining. Normally, we have a certain amount of carbon dioxide and a certain amount of oxygen in our bloodstream. That balance is essential for normal function. Because of Mason's lung disease, he has always retained more carbon dioxide than he should. The amount goes up when he's not doing well and goes down when he's doing better. When the number gets above 77, the references say, worry. Mason has had numbers above 77 before and the team working with him has been worried, but never mentioned doing much about it because he didn't look like the number was really reflecting his condition (clinically he didn't appear to be that sick). This summer, the number got as low as 56 - really good for a kid like him. Unfortunately, during this hospitalization, they have looked at the number twice and both times it was really high (92 a couple of weeks ago and 91 yesterday). Apparently, this has caught the eye of the pulmonologist covering the hospital this week. According to the resident we talked to tonight, the only way to "force" the number to get lower is "hyperventilation," and the only way to do this is through a ventilator. So, while rounding today - sometime before noon, the pediatrics team mentioned the idea of a tracheostomy (hole in the throat to which a ventilator could be attached at home). They mentioned the idea in passing and didn't realize that they were dropping a bomb on us.

The idea of a trach doesn't scare Bill and I; both of us have worked with kids who have them. This isn't even the first time this has been talked about for Mason. When he was in the NICU and unable to get off of the CPAP, we discussed this as an option should the steroid burst not work to lower his oxygen needs. Fortunately, it did at that time, so we moved on and didn't give the trach another thought. The idea has been brought up during this hospitalization as well, but it was by the kidney doctor as a question of whether or not it was ever considered. We didn't put much stock in the idea. So, when the team brought it up today as something they were considering, we felt like we'd been hit by a mack truck. How could they be considering this when we just put a plan in place yesterday and he was doing better? How could they be considering this when no one had even talked about it with us? How could they be considering this when the lung doctors hadn't even seen him since early last week? How could they be considering this when the blood gas values were taken when Mason wasn't doing well? Is he really getting that bad and we're so oblivious to the need? The idea of a trach had become unfathomable, but yet we were facing it. How did this happen?

Bill and I set to find out everything we could about a trach as a treatment, looking at the research, looking at cases where kiddos who were active used trachs, looking at our options. Finally, after we thought they had all left for the day and were completely ticked off that no one had come back to talk to us, the resident came in. She proceeded to summarize the work the team had done today -- consult with nutrition to increase the calories and reduce the fluid a little more (a 3 day process) and modify the potassium and chloride supplements (to be monitored daily). She was just about to leave the room when I asked "so what's going on about the trach idea?" Fortunately, according to the resident, this was just an idea that was floated, nothing that is being planned for the near future. Before any further planning takes place, we would need to talk to the lung doctor and our pediatrician to see if this is even the right course of action. She wasn't able to answer many of our questions, but it sure felt better after hearing that nothing is moving forward in the direction of a trach right now. Again, it's something to think about another day. I do have to say, though, it would have eased our minds tremendously earlier it they had let us know during rounds that they were not going to explore the trach option today, it was just something to keep in the back of our minds as something if he doesn't improve. Minor details, I suppose.

We will repeat the blood gas test when Mason is doing better and see if it is trending down. If it is not...well, we'll cross that bridge when we get there.

Mason is still smiling, still laughing, and still cute as ever. He's getting used to his hospital crib and doesn't have nearly as many bruises on his forehead. He is learning to give "5" and giggles when we ask for "high 5." He's doing ok, just needs to be doing a little better before going home.