Hurry Up and Wait

Today was a day that can best be described as "hurry up and wait." We started the day with Mason grunting his way from asleep to awake. When he does this, his oxygen need typically goes up, and today was no exception. Before long, he was up to 2 liters of oxygen into his nose and low oxygen saturations. Both Bill and I were quite frustrated since nothing had changed in the plan and we could have continued to do this at home. Shortly after I dragged myself off to work, though, Bill and the doctors made some decisions. The plan for the day was to give Mason another dose of Lasix (diuretic), change from using an inhaler for one of his steroids to a nebulizer (basically a mist blown into his face), test for viruses, re-place the feeding tube, and have a care conference. Then came the waiting. By 12:30 when I came back, none of those things had been done. So, again we waited. We found out much later (about 4:00) that they wanted to again talk to us about each of those things, but wanted to have enough time to devote to the whole conversation. So, we waited. Finally, about 5:00 or so, some of the things happened (Lasix and nebulizer) and now Mason is feeling much better. Tomorrow they'll do the test for viruses, they found out they don't have to re-place the feeding tube, and the care conference is still in the works.

The good news: The lung doctor came by today and had good news to report. The x-ray showed that Mason's lungs look like they are moving air better than before. So, they are growing/developing as well as they can.

The bad news: The running theory of why we are having these setbacks continues to be the aspirations (food/stomach juices slipping into the lungs because of reflux). So, despite the lungs getting better, the aspirations are potentially hindering the improvement.

The bottom line: So, it's getting to be decision time. Hopefully Thursday afternoon we will be having the care conference after all. After talking to all of Mason's providers at once, getting all risks and benefits on the table, and voicing our concerns, very likely we will agree to the surgery (both the feeding tube into the stomach and the reflux sugery - see the 7 month update for details). This is a very scary prospect for us, but potentially our only option for lung improvement.

For now, though, Mason is feeling much better and we will likely be able to decrease the oxygen over the next day or so. We'll keep you posted.

P.S. Joey, you are in our prayers!