Thursday and Friday were fairly long days for me work wise so I didn't get to spend any time with Eli. Patricia has been the steady presence at the hospital lately. She told me today that we got the official results back from the sleep study. The results weren't a total surprise. Eli is doing better. I think she mentioned that he is having roughly 14 apnea spells an hour now instead of the 70+ he was having on some of the prior sleep studies.
There were a couple new things that came out of the sleep study. For one, they didn't complete the sleep study on the new nasal pillows; instead they used the mini mask which isn't a fantastic fit. This didn't make us happy at all. One of the reasons we agreed to doing a "third" sleep study was to see how well the nasal pillows and the home care BiPAP machine would work for Eli. You could call this a trial run for getting us to the floor. The fact that they didn't use the nasal pillows is very frustrating as is the reason they didn't use them. After working with one of the respiratory therapists and Dr. Mackris, our appointed pulmonologist and resident sleep expert, they got the nasal pillows working. When the night crew came on and they went to put the nasal pillows on Eli, despite the very detailed instructions left by the respiratory therapist and the doctor, they couldn't figure out how to get a good seal on the prongs. Patricia and I lightly refer to this as a "lack of effort" and it's simply galling because we're sitting here in the NICU and we're supposed to be getting top notch care 24 hours a day. How one team of people can make it work and the next team can't is beyond my comprehension.
The other thing that's changed is Eli's schedule. He is now going to be off BiPAP and on regular nasal cannula for 12 to 13 hours a day. Why this decision was made is still a little baffling. When we discussed it with the hospital staff we were quick to point out that we went down that road before and leaving him off respiratory support only results in his CO2 level creeping higher and higher. You'd think they'd have figured out some of this after over 2 months but we have to be the constant watch dog and guardian over Eli. Now I'm starting to feel guilty for missing so much time with Eli. Patricia is with him all day long but even she needs a break and that has left Eli without someone to care (provide oversight) for him about 12 to 14 hours a day.
Finally, the last thing the sleep study told us that we didn't know is that Eli is still experiencing some oxygen desaturations when he is on the BiPAP. When he is on the BiPAP he is getting normal room air blown through the mask. This has been good enough to keep his oxygen saturation up according to the pulse oximeter they have hooked to Eli all the time. According to the sleep study Eli has some desaturations that are not being captured by the normal hospital equipment. The sleep study probes and machines are a lot more sensitive and give a more accurate readying so they could tell when he was having these mini-desaturations that were not being picked up on the regular probe. The net result, Eli will now be on 30% oxygen when he is on the BiPAP. This provides him with a little extra cushion and helps him maintain his oxygen saturation.
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