While we are here in Texas, you can reach us via email at firstname.lastname@example.org. In the meantime, I will be emailing updates to the blog.
Last night was another difficult one. Jack dropped his oxygen saturation level while using the full face CPAP mask. He was using every muscle in his little chest and abdomen to try to suck air in. His oxygen levels would drop down to the 30s and 40s hover a few seconds and then slowly ascend back up to the upper 90s. Then a little while later, he'd start all over again. We called the pediatric pulmonologist on call and he did not seem to believe what I described to him. He actually told me that what I described was not possible. I explained that my husband and I were both nurses and Jack has followed this same respiratory pattern in the hospital where it was documented and I knew that it was not only possible but happening as I was speaking to him. After thinking it through, he told us to try increasing the pressure setting by 1 cm H2O for 20 minutes and if it did not get better then to decrease it back down 1 cm H2O below the original level. He actually did much better on 7!
cm H2O. He did not drop his saturation level but there were times that he seemed to be "working" to breathe. I just hope we get this worked out soon. The CPAP is supposed to make him rest better but so far we are all losing sleep! Hope to have good news to post tomorrow.