Full of Gas - and Not the Good Kind

Overnight last night, Mason had 2 major desaturations and had a little trouble recovering. Then unfortunately, today was another rough, scary day that started off bad, got worse, and now is a bit better we think. Upon waking up, he again had trouble holding his saturations unless he was sleeping. Mason's carbon dioxide level was measured today, not estimated like in previous days, and was really, really bad (pCO2 = 140, CO3 = 58.9 for those of you keeping track). We got another xray which didn't really look too different and called for a pulmonology consult. We also ran some labs for the kidneys, and found that Mason is now a little on the dry side, so his nephrologist (kidney doctor) decided to make some changes with his food as well as change some things with his diuretics and electrolyte supplements.

And now back to the lungs:
When the pulmonologist (lung doctor) came in today he listened to Mason's lungs for the first time in a month. We heard in our care conference last week that he had been following from afar, but it was nice to have him come by, though a shame that it was only because Mason was worse again. Anyway, he listened to Mason's lungs and noted that they sounded really tight and that he wasn't moving air well which could be contributing to his high carbon dioxide level. With much reluctance, at our urging for finding out what our options were, the pulmonologist suggested continuous albuterol nebulized treatments through his ventilator tubing. He kept saying that whether we did the treatment or not depended on the philosophy of treatment. He said that with comfort care (which is what Mason was when he was a DNR), they would do nothing and just allow Mason to go to sleep and die. But, if we wanted to be more aggressive, we could see if the continuous albuterol will help. What was very unsettling was that he seemed almost mad when we asked what our options for treatment were and even more put off when we reinforced that Mason was now a full code and we wanted to treat his symptoms. Thankfully, we were not the only ones in the room and the doctor who was with us noticed his attitude as well -- it wasn't just our own defensiveness. The doctor who was with us agreed with our interpretation that the pulmonologist likely disagrees with our choice to change Mason from a DNR to full code, thinks that Mason has outgrown the capacity of his lungs, and doesn't think he has a chance.

I can't do justice to how upsetting this interaction was for us. I understand that our decisions may not seem right to everyone, but really, this is scary enough. We don't need to feel judged. We need to be given the information and allowed to make the choices we feel is right for our child. After this interaction, we were so mad, so scared, so disappointed, and so sad all at the same time.

Well, we're now about 10 hours later and have seen a decent response to the nebulized albuterol treatment so far. At the same time, Mason got another IV and they changed both the lasix (with a lower dose) and the steroid (with a higher dose) to be given by IV. He went from being extremely lethargic this morning to being active and awake this afternoon. He seems to no longer have a headache or other area of pain. I even was able to get him to smile and laugh a little bit today which I haven't seen in the last few days. His volumes on the ventilator are better signifying that his lungs are expanding and contracting a bit better allowing more gas exchange. His saturations are better both when awake and asleep. His reserve is better so that he doesn't desaturate with all activity and every tantrum and he recovers a little more quickly. Unfortunately, we can't draw blood from his IV, so we'll wait until morning to draw his blood gas again - no sense in waking the sleeping baby by sticking a needle in his arm.

At this point, we don't know how much we can hope for or whether or not this improvement will last. We are encouraged that there has been a decent response, but so guarded given that he was doing so well last week and so poorly this week.