It was the first time we have gone when it wasn't a cancellation appointment so we had lots of time to prepare. My mom uses a CPAP machine so she napped with Justin this week and showed him how it works and he got to try it on and test it. He didn't mind the mask, but he did not like the air at all. I was glad we could prepare him for what was coming, but it was still tough.
He knows exactly what to expect and he was fine up until the nurse had to begin hooking everything up. We had John helping us this study and Justin did not click with him...at...all.
Justin got to watch Barney, as promised. All was good until the pile of wires came into view.
No pictures of wire attachment because it took all my energy to hold him still enough to place them. There was no discussion of the best way to do this or how to make it less traumatic. John's method was "get it done...get it done fast...the more tape, the better!" We went through a box of kleenex wiping and blowing poor Justin's nose. And I was fighting this internal battle like I fought when we handed Justin over for heart surgery. I know it needed to be done, but I didn't want my son to hurt. And Justin's mournful cries for "mamaaaa" nearly broke my heart.
So here's with the top part of his head attached. Still needed chin, chest, thumb and nose. Plus the fancy hat!
Now he had on the stocking cap. He missed almost all of Barney with all the screaming. When it finally ended he wanted us to restart it.
They put the pulse ox on his non-sucking thumb. One of the good things John did for Justin! You can see everything hooked up to the box on the bed behind him. I had to take all the pictures holding the camera out in front of me since Justin wouldn't let me leave him. You can see how red his poor little nose is!
Completely ready for bed. He had to calm down for us to attach the nasal cannula so it wouldn't get filled with snot! I am so grateful for his Bee!
The study was scheduled as another split study: the first half of the night was without the CPAP and the second part was with it. That was not what I expected and I expressed my concerns right away because the last time Justin didn't meet the requirements for the CPAP with enough time left in the night to try it. I did not want that to happen again so that we would need to come for another study. John said he could call the doctor and see what he said. I never found out what the doctor said and we just went to sleep without me knowing what was planned.
Around 12:30 am John came in (with help) to attach the CPAP. He said that Justin hadn't been experiencing much apnea, but that he would try the CPAP to see what happened. It took some time to get it put on and Justin did not like it. By this time, Justin was screaming any time John would come in the room. He didn't even have to touch Justin for him to start screaming. Some of his more blood-curdling cries were when John wasn't touching him!
Justin didn't mind the mask so much, but when they turned on the oxygen, he started fighting. John finished and I was left with the task of getting him back to sleep. The words I found that worked the best were, "Calm down and go back to sleep. We cannot go home until you go to sleep." That actually made him lay back down! When Justin finally relaxed and was sleeping (I think), John came back in and had to change the nasal cannula because, would you believe, it got clogged! That set off another round of hysterics and I had to start over again.
Somehow, we made it through the next 5 hours and we were awakened at 6 am. I got a picture with the CPAP before John took it off. The entire night Justin didn't try to take it off. I think he would wake and it would scare him and then hearing me talk in his ear would remind him of what was happening and then he would settle down again.
Taking everything off caused more hysteria and poor Justin was not happy by the time he was finally free. I learned a little more about John's philosophy: more waxy goop, the better. Justin's hair was coated and it still isn't all out of his hair. I could only scrape so much before Justin pulled away.
Poor guy!
So how do I think it went? In spite of all the tears and trouble, I think Justin slept much better with the CPAP machine. I think he fell asleep quicker and slept deeper. He was more still when he slept (not so much flopping) and calm. When I nap with him, I notice that he seems to hold his breath as he's going to sleep and I need to tell him to remind him to stop. When Justin laid down, I felt like he slept very quickly with none of that weird breathing. Of course, this is all my perception in a completely dark room while I am sleeping in the same bed with him. We have an appointment next Monday to hear the official results. We got to keep the CPAP mask and Justin put it on show Randy and my mom, so I don't think he would mind wearing it. I think being at home, with no extra wires and no John we would do just fine. Now we wait and see.
No comments:
Post a Comment