Extreme Makeover

Max's surgeries went as well as can be expected. The procedures took about 3-hours. Max did not have a great night last night, however. He got his IV put in late last night, and a blood gas was drawn from it shortly thereafter. It was one of the worst gases Max has had in months; 7.37 and 79. So the decision was made to intubate Max and put him on the ventilator this morning before his surgery. He would have had to be intubated for surgery this morning regardless, but because of the bad blood gas they decided to do it a little earlier. He is still on the ventilator as I am writing this. We expected that to a certain extent, and his gases have been a lot better post-op than they were early this morning. Right now his vent settings are 28 over 8, which are about as high as they were back before Max's hernia surgery and the miraculous move off of the vent to CPAP. That is kind of a bummer for us, but, as I said, his gases have been looking better. We knew going in that the docs planned to leave him on the ventilator for a while and get his gases looking more "normal." The other bummer is that Max's oxygen needs climbed to nearly 70% a few hours after he got back to the NICU nursery, so the decision was made to put Max back on the Inhaled Nitric Oxide (INO). Those of you who have been along on this ride with us will recall this substance. Max has been on and off of it 3-times. It helps dilate the capillaries in the lungs and aids the transmission of oxygen into the blood stream. It seems to be working, his oxygen needs are in the low 50s right now, but we cannot help but feel like it was a step back.

It has been a long day. We were at the hospital from 6:30 AM to 7:00 PM. Most people that do that get paid handsomely for their time. It was not a burden to spend time with the boys, but Max was not himself and that is hard for us to see. He is like a different boy now. He breathes through a hole in his neck and gets fed through a hole in his stomach. We likely won't hear his cry again for some time either. That was one thing we really liked in a strange way because his brother makes hardly any noise and cannot really cry. It has just been an emotionally and physically draining day for us.

Here is a picture of the "upgrades" that Max got today. The trach is quite obvious. Max is a chunky boy and he is also quite puffy right now (because of the all the IV fluids), so the actual port and collar are not visible. The other big thing is the port in his stomach. It has some gauze around it right now because it is fresh, but that will go away when it heals up. The feeding tube will be connected to this port and his feeding with be pushed into his stomach. He has at least 4 other incisions from the Nissin procedure as well. This kid hardly has a square inch of skin without some sort of scar on it.