After we went to the new sleep doctor, we waited to hear from scheduling about an appointment for another sleep study. The doctor indicated that it would not be long before they called and it would not be difficult to get in another study before the baby is born. I admit I let it go a little long without hearing anything because that was in the midst of Justin's vomiting. So I did not call until after we returned from Savannah. By that time their May schedule was filled and they offered to call back when they began scheduling for June. I had to say very politely that while normally that would be just fine, I had a deadline and if it didn't get done before then, I wouldn't be able to come in with Justin until next year probably. (Knowing how long it takes my kids to sleep through the night...) I got offered the cancellation list, which I agreed would be fine and set this weekend as the last days I could probably safely schedule a study. They were very helpful and we got a call last week that an appointment last night had opened up. So last night we headed down and spent the night at the sleep clinic for hopefully a very informational and helpful sleep study. And no labor pains so we made it!
I have to say to begin that it was a much better experience all around than we had at the other clinic. We were told to arrive at 8 pm, which concerned me because by the time everything was connected I knew it would be way past Justin's bedtime and he would be more cranky while everything was being done to him, but we got there early and the tech (Jody) took us right back and we got started. She explained everything to us and said that she would listen to whatever I said that Justin needed and she would stop if necessary and walk away and take time for him to relax, and if we couldn't finish the study we could leave in the middle of the night if we needed. That was very comforting and reassuring. You can see how much happier he is and we had already attached a few wires. And because it was a titration study and not baseline, we did not need the nasal cannula and temperature sensor which are always the hardest to tolerate so that helped immensely!
He still cried some and did his super cute "oush" (ouch), but I could very confidently assure him that I would not let Jody hurt him, and she was very gentle and patient. He watched his Veggie Tales and did not cry to the point of needing to blow him nose but once at the very end and he did not get the red dots around his eyes from straining and screaming so insistently.
Everything is all attached and look at how calm he is compared with times past.
And rather than the ski mask he just had a stocking cap, which was so much more comfortable. I was worried that all his flopping would pull off some of the sensors on his chin, but instead his scrunching up cemented then on and it was difficult to detach in the morning. The only things that we had to reattach during the night was one of the leg sensors and move the pulse ox from his finger to his toe (which is where I really wanted to put it in the first place so his sock would hold it on).
We were able to bring our own tubing and mask so all I needed to do was loosen the straps to accommodate the excess padding on his head!
This was Justin's bed for the night. I didn't have to sleep with Justin this time. I got a fold out chair. Justin got a better deal. Mine was hard as a rock and I tossed so much I was glad I didn't bother Justin but I could have used a lot more padding!
When we went to sleep I asked what time we would be getting awoken, since the information we received prior to the study was a bit sketchy on that. Jody told us 5 am. Yikes! While that's fine for me I was thinking about how our day would go with Justin on that little sleep. She said she could wait a little and I asked if 5:45 would be okay since that usually ends up being the time Justin wakes up anyway. She said that would be fine and we settled down for the night.
I really have no idea how the night went. Since the bathrooms were outside the room and I cannot make it through the night without at least one potty break, I had to leave the room and the monitoring computers are right there I was able to talk with Jody during the night. I tried to see if I could get anything off the computer monitors when I was talking with her, but she wasn't giving me anything. Bummer! And I couldn't tell at what pressure she had the CPAP set. I don't even know if she turned it off because she seemed to indicate that maybe it wasn't the pressure that was the problem. It was all very cryptic. We'll find out more when we get the results.
The first picture of the morning. Justin was ready to pull it all off and be done! The disconnection process was a little harder than the attachment because he was still tired and pulling tape off is harder than sticking it on. I just left on the leg and chest stickers (the round ones you can see on his legs) to come off when I gave him a bath at home.
There were no showers at this facility so I did the best I could getting the goo out of his hair with a warm washcloth and then we headed to meet Randy and collect Travis. The one good thing about the late arrival and early leaving times is that Randy was able to be home before we left and we could meet him before work without him having to be too late. Then I wanted a treat of some coffee (which I haven't been drinking) to wake up for the day. So we went to Panera, with Justin with his goopy hair and still in PJs. Apparently Travis was still tired too!
A few brother reunion pictures!
Plus an affectionate noogie!
After I talked with Jody during the night I couldn't go to sleep for a while so I thought some about what she said. I got a bit discouraged because if CPAP isn't really helping, that means we have to start over. From the beginning, Randy and I didn't really think Justin had apnea, but the first study came back with that diagnosis so we began focusing on that. It's been almost 2 years since that first study and we just want some relief for Justin. I decided that it's like every sickness begin a journey from diagnosis to resolution. Some journeys are short, like from discovery of an ear infection to medicine to cure. This is one of the longer journeys. And it's not a straight road, it's more like a game of Chutes and Ladders with more chutes than ladders. I am discouraged because I feel like I can see the end of the "game" but we might be preparing to take another chute further back down the game path. It's not that I want CPAP to be the answer, but I just want some answer. I want to be able to reach the resolution of this issue. If this isn't the answer, we are preparing to take another chute which means we need to start over in some sense and begin exploring another path. This one has been two years long, how much time will another one take? I just don't know what to think. We are so grateful for all your encouragement and of course we will share the results of this study as soon as we know!
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