Sleep Study number 5 Complete!

Gabe is snoozing in the stroller next to me and I imagine not long after we hop in the car with Josh, I will be too. Another long night of up and down (for me, Gabe actually slept pretty well) behind us, with more hopeful news to follow - we hope. Yesterday we met with Dr. Macke in Evansville, then we were on the road to Indy again. Good news from yesterday's appointment - we finally discussed the bloodwork from October 26 and Gabe's bicarb levels (CO2 in the blood) are finally back down in the normal range- which is below 25. Before he left the hospital I believe his levels were in the 30s, in August it was 28 and in October it was 23!! They did checked his O2 sats when we arrived on the 1/4 liter and he was ofcourse at 100 and then we took it off and they checked him at the end and he was holding steady at 98. During last night's study, once again they never felt they had to turn on the oxygen, so he had another night on room air. Based on the last study's results, we stayed on the O2 b/c he did wander down in the 80s from time to time and also b/c he was still having "obstructive episodes", althought they had improved. And ofcourse, we are still watching those CO2 levels. Just as I had before, when I was awake I studied both the CO2 and the O2 monitors, looking for clues as to what the outcome would be this time. I never saw the O2 wander below 95 and the CO2 was usually steady at 36 or 37. We are very hopeful that these results will get Gabe off of the oxygen all together, or at least during the day. Dr. Macke told us yesterday that we could reduce the breathing treatments from 3x a day to twice a day. He also seemed hopeful that we might be rid of the oxygen after this study, and that given a choice of weaning off the oxygen and weaning off of the breathing treatments - his goal was to get him off of the oxygen. Good news! So now we wait. We're pretty good at it by now.

It is surreal to me that just under 5 months ago we were agonizing over the decision to go home on oxygen and "take our chances" or get a trach and go home on a ventilator. Now we are discussing coming off of oxygen completely. I know there were many people who supported our decision to forgo the trach, but I don't think any of us really thought we would be weaning from O2 this quickly. Maybe I'm wrong - nurses? Maybe they knew better than I did and they are just reading along and smiling knowingly. They always had faith in Gabe. Naturally we did too, or we never would have come home without the trach, but I still expected that the oxygen wouldn't really even be discussed until spring.

We were warned by Dr. Macke that he has treated some RSV babies in Evansville now - so it is in the community. It's been hard to keep him so secluded when we want nothing more than to show him off, but it will be well worth it if we can stay out of the hospital this winter. We'll just have even more to celebrate in the spring - and when his birthday rolls around. OK - time to sign off. Josh should be here any minute and we plan to visit the nurses, wish them a Merry Christmas, and then head for home. I still have to work later today and Josh is working tonight - and my family should be on their way from NC. Busy day, but that's what we live for!!