Friday, April 29, 2011

The Un-Fun Stuff, Part One


Over the past couple of months, we've had some un-fun stuff to deal with. Don't get me wrong, we've had some really fun things going on, too...but for at least the past couple of months the un-fun stuff is what is sticking with me.

After Jellybean and Peanut came home, we learned that Jellybean had sickle cell disease. It wouldn't have mattered to us had we learned about it before the boys came home, but it came as a bit of a surprise to learn it after they had arrived home. But, for the past 3 years Jellybean's sickle cell took a backseat in our lives. Jellybean had VERY few pain episodes and they were all relatively easy to treat (just over-the-counter pain meds and lots of water and he was good to go in a day or two).

All that changed at the beginning of March.

Because of some sort-of related issues with Jellybean, we decided (with his doctors) that it was necessary for him to have a sleep study done to help us determine whether or not Jellybean needs to have surgery to get his tonsils and adenoids taken out. After lots of run-around with the sleep center, we finally got an appointment made. They wanted him to come in about an hour before his regular bedtime so that he could get used to the place and get all hooked up before his bedtime. They said it took about 40 minutes to get him all hooked up.

When we arrived the sleep technician was all excited to tell us she had already turned on The Disney Channel in our room so Jellybean could watch TV while he got hooked up. Now, I don't mind him watching some TV...but I also know that if there is a TV on in any room, Jellybean gets completely transfixed by it and absorbed in it. Once he gets into something, it is hard for him to sleep. But, I decided to let the TV stay on to keep him distracted from all the wires the tech was putting on him.

The TV was not our problem, however.

The problem was that the tech would hook up an electrode or two and then leave. A few minutes later she'd be back to hook up an electrode or two and then leave again. The 40-minute prep time for the sleep study turned in to a two and a half hour prep time. We didn't turn off the lights in our room until nearly 10pm!! If I had known it was going to take so long, I would have insisted we arrive earlier! I had to stay with Jellybean during the sleep study, but I had to sleep on the recliner in the room...not exactly comfortable sleeping arrangements for me. But, I can deal. The next problem was that the tech kept coming into the room, waking me (and Jellybean) up for random things. Then, she came in around 4:00am to ask me if I wanted her to wake us up at 5:00am. What?!?! Why on earth would I want her to wake us up at 5:00am? Jellybean requires LOTS of sleep...he had already lost nearly 2 hours of sleep because he got to bed late...I definitely did not want him to lose even more by getting up so early the next morning. So, I told her to wait until 6:30 to wake us up.

We finished the sleep study and headed off on our merry way the next morning. Of course, I was pretty unhappy with the tech and how the study was conducted, but it was over and there wasn't anything I could do about it (except complain to the doctor when we saw her to talk about results - which I definitely did).

But, that night we had an entirely new issue to deal with. Part 2 coming up next....

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