Last week the DME company came with their "bucket-o-masks" to try and find a better mask to fit Justin and help him sleep better. They brought the one we had ordered, plus several others, including the one I found on-line that seemed like it would fit better. We tried them on a very reluctant Justin, who cried through the whole process. The one super sweet part was Travis consoling Justin. He hears me tell Justin all the time that "it's going to be okay" and "don't worry, I will be right here" and Travis came up with his own line, while holding Justin's face in his hands, "Justin, don't worry, I will always take care of you." I melted right there in the middle of the kitchen, with Justin sniffling and the DME person offering more choices of masks. That was a good moment.
So we decided on a new mask and the DME would send it out the next day so we would get it in a couple of days. Not a problem, since we were doing okay with what we had for the time being. The new mask allows a lot more space between Justin's upper lip and eyes so it's not so big on his face. Plus I think that I can sew a piece of velcro on the little cap (it so looks like a yarmulke!) so the tube goes over his head.
The other interesting information was contained in the sleep report that the DME person brought out with her. It recorded all kinds of interesting information about his breathing and mask leaks and yeah, OSA incidents. Absolutely astounding! Justin had almost 100 incidents of OSA that night, with close to half of them occurring during a 45 min. window. "How is our child not dead?" Randy asks when I show him the report. Okay, so maybe not that serious, but still, Justin is not getting good sleep. Not by a long shot. We have a lot of work ahead of us still.
We got the new mask and tried it the first night. It lasted about 4 hours and after I had spent more time awake than asleep, I switched back to the old mask. I tried the new mask again the second night, and it lasted about an hour. I didn't even try after that. This is where the communication barrier is enormous. I cannot understand what it is about the mask that he doesn't like. I called the DME to see what the report showed to see if that would lend any insight and she asked what he doesn't like. Oh, if I only knew!! It makes me so frustrated because I want to understand and I can't. And when he's tired and upset with the mask, he just wants me to take it off and then he lays back down and goes to sleep.
I am scouring the internet for feedback on different masks and problem-solving websites to help me figure this out, but it seems like it's all personal preference. Everyone has the thing that makes the mask work best for them, and it's just a matter of finding that out about Justin. That's comforting and frustrating.
Justin has taken to crawling back into bed around mid-morning. He goes back in his room and climbs into bed and lays there, not really sleeping but just resting. It makes me so sad that when my child is quiet, and mother instincts start telling me go look for him, I find him in bed, not causing a lick of trouble. I am glad for no trouble, but I wish he had energy to do something!
We're going to the doctor this week, so we're hoping we can get some answers and make some plans for what to do next. Please pray for quick resolution. Our goal is to move the rooms around to get ready for the baby's arrival and we need Justin to be sleeping well to make the move easier. And if we need more sleep studies, we need to do it before too long. We both won't fit in the beds in the hospital after too much longer!
Thank you for ALL your prayers! We are so comforted and encouraged by you all!
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