Same Stuff, Different Day, Better Outcome (So Far!)

Today could be described in a nutshell as a repeat of yesterday, just one step closer to artificial breathing help.

Last night went fairly well from Mason's perspective. He slept through the night without too much trouble. From the doctor's perspective, it didn't go as well as she had hoped. We were not able to wean Mason's oxygen concentration down much at all. He was turned down to 85% oxygen/15% air and within 15 minutes started to desaturate. So, his concentration was increased and he did fine for the rest of the night. This morning's labs looked good and things seemed to be stable - not improving, but more importantly, not getting worse. So, I went to work.

Then, about 1:30 (same time as yesterday), I got a call from Bill saying the same thing as yesterday - "he's not holding his saturation, you need to come back." Mason had had an Echo (ultrasound of his heart) at about 12:30 and just seemed to not do well after that. By the time I got back to the hospital at 2:00 (I may have broken a few speeding laws), the team was once again in the room and once again deciding what to do. They had already decided to bring in a CPAP machine, "just in case," and were talking about putting Mason back on Nitric Oxide. For those of you who have been keeping track, this is one of the machines he was on for the 1st 9 days of his life. The gas is not the same as laughing gas, but rather is a gas that helps to dilate the vessels to make moving air around a little easier. As the respiratory therapist was setting up the machine, the cardiology resident came by and said that she would recommend that Mason be put on nitric oxide to help him breathe -- seemed like everyone was on the same page!!

Amazingly, and wonderfully, within 3 minutes of hooking up the machine, Mason's oxygen saturation when from the 70's to 100%. Clearly this treatment was making a difference. You could feel the tension leave the area - ours included. Mason relaxed and clearly found it easier to breathe. You might ask why, if this made such a huge difference, why haven't we done this sooner? In a nutshell, because we didn't know it would help. Mason's heart issue (persistent pulmonary hypertension) has been stable since he was born. They haven't been able to measure the extent of the hypertension in his Echo because it is so mild. So, because it has been so stable and so mild, cardiology believed that he did not need medication to treat it. However, apparently, according to the Echo today, the hypertension has increased some over the last couple of months. So, with that and the fact that Mason was so acutely worse, it was time to try it. And, thank God we did! I believe we were just a short time away from having to make a CPAP vs. ventilator decision when the Nitric was started. I am so thankful for the wisdom of my fantastic husband for asking the question about whether Nitric would help and for that of the providers to support such a great idea!

So, here we are, night 2 in the PICU in a much better place than the night before. Mason is weaning down on his supplemental oxygen; currently on 14L of 90% oxygen/10% air and saturating at 96% -- light years better than the night before. Thank you for all of your support and prayers. We appreciate every one!