So glad I was prepared.
We got in the room and the doctor said that Justin did great and that he only had 1.6 OSAs per hour and that he was so improved that it didn't appear that CPAP was necessary. I asked if that was all she had and I pulled out my folder and laid out my evidence and we began the great debate. She read me letter and agreed that I had some valid points that deserved further discussion. She said that she would make sure it was addressed in future meetings. (I still sent additional copies to the facility where we had the actual study, plus the main lab in the Medical Center, just to be sure everyone knows what's going on...) Then when I got out my reports she was shocked that the DME reports showed a much greater incidence of OSAs and other sleep disruptions, so much more so that using them as evidence it would seem that further treatment is needed. She validated my concerns and put in orders for another sleep study. She said that in this study, Justin didn't meet the criteria for CPAP during the night and that is why it was never used. I disagreed with her and said that the study was only baseline and not titration or split night at all. She looked confused and said that her orders may have been changed by her supervisors. What? Not making sense to me at all. Then I asked if this study that she was requesting would be split night or full night CPAP. She was requesting full night since we already had data without CPAP. (Me trying to determine what to expect from this next study, even though I will be sure to ask on one of the many confirmation calls...) I tried to see if there were any other options for answers to Justin's sleep problems. I am not married to CPAP, but if that's all I am offered then I need to work with that. CPAP seems to be the only tool in her arsenal. I am at a loss for how to continue.
As we left I asked for a copy of the sleep study results (just to check the data for myself...) I read it while I was walking over to the other building to deliver my letter and the bill we received for over $500 for the two mask fittings we needed at the sleep lab. (they're going to work on fixing that...)Justin has many night wakings, but only a small portion were associated with respiratory disruptions, resulting in the analysis of 1.6 OSAs per hour. However, he woke up 136 times during the almost 10 hour night! That seems to be a problem! It a person is waking that many times, regardless of whether it's for breathing issues or otherwise, something is wrong! Even I can figure that out! So I didn't even get to talk with the doctor about that because apparently that did not seem to be a problem for her.
We went to lunch with Randy after the appointment and Randy was confused and speechless when I showed him the report. Me too. I didn't even realize until I left that the doctor did not check the data card in our CPAP (that I lugged all the way up to the hospital for no reason) or reference any reports from the DME that she had received. This appointment was also supposed to be about CPAP compliance and that wasn't addressed at all. If the doctor is supposed to monitor our progress (since Justin is a patient and all...) why isn't there any of that being done? Is that solely my job? I asked for another DME report and so far I haven't received it and I didn't get enough notice of this appointment to request that a DME report get sent to the doctor even though they are supposed to send one monthly without my intervention.
Randy and I haven't even had time to discuss everything and determine our next move. We're debating going to another doctor (either within the same system or not), not using the CPAP at all to see how Justin does for a while, or maybe something completely different. I haven't gotten a call about another study yet, so the timing of that may affect our decision. Keep praying for wisdom, strength, and good sleep! Thank you!