Monday, November 23, 2009

Sleep Study- in pictures

The long awaited sleep study was last night. I am exhausted tonight so that explains how well it went. Right!~
We left extremely early for the sleep study because it was snowing. No it was a fast moving blowing and freezing semi-blizzard. Dallas and I decided that I would take Tyler alone because 1) Dallas has his own set of sleeping issues. 2) What was the point? There is only one other bed and if he stayed home I could sleep in the morning ( after) and 3) why pay for 2 cars to drive up there. Totally pointless.

We got there pretty early and the lights were off and the door was locked. I was horrified that driving up there, keeping Ty up past his bed time and then not having anyone show up was going to make me SUPER mad. We need to have the right meds before our procedure in December.
At 8:30 the tech showed up and we were the only ones there for the night.
The rooms were very nice but the beds ( though they looked nice) had mattresses far below hotel standards. I mean, if the room looks nice at LEAST make it a pillow top. But Ty was pretty chill at the beginning. He was watching a movie and laughing until the tech came in.

I have no photos of the ordeal because it required pinning, sitting and basically holding my kid down in order to get him to allow the tech to get him to put all the crap on that they need. I seriously can't fathom how the heck they expect anyone, kid and adult to sleep with this crap on their bodies. We were lucky to get his meds in before he was crying in hopes that he would crash as soon as the stuff was over. It took about an hour before he finally crashed.
(Sorry about the blur quality but it was dark) That is the amount of wires that were stuck somewhere to his body. Not kidding. He had 3 on each leg/calf. 4 on his back 9 on his face 4 on his head, 5 on his chest and 2 under his nose ( not pictured) They had a nasal cannula and a nose pressure thing ( the 2 on his nose) that they had to wait for him to be deep asleep because they knew he wouldn't tolerate them to put it on before hand. And on his foot he had a foot probe for oxygen and on his chest 2 straps. Yep.. and he was suppose to sleep. Oh! and a microphone and a monitor for his heart. Yeah not kidding

So of course the results aren't in yet. He feel asleep around 9:45 pm and slept soundly till around 11 or 11:30 where he was up around 4-5 times ( not sure how many, I lost count around 3) and at 4-4:30 he got restless enough he was sitting up. And at 5:00 he signed all done. I moved into mom cope mode and moved him into my bed where we put on a movie and "tried" to sleep and the tech came in and said it was pointless to keep him there if he wasn't sleeping and we then combined efforts to pull off the 30 MILLION probes on his body. Then off we went. He cried taking them off almost as much as putting them on!

We went to see if Smith's was open in hopes to score a donut but they aren't open till 7 and it was only 6 so we went to McDonald's and got us a yummy Breakfast ( I know, so healthy!) but it was such an early morning. Ty and I ate ate breakfast in quiet. Then watched a few movies before we went and bugged Dad! At around 7:30 I couldn't keep my eyes open any more. Dallas saved me and took over the parenting duties and I slept ( with weirder dreams than I care to admit) and I resumed the parenting duties a little later.

Through out the day Ty didn't nap and tonight he was DONE and so were his parents. I think emotionally I was done as well. As I was talking to Dallas last night I thought " This really sucks." I honestly wish a million times over that we didn't have special needs. That our live was mundane and boring where the most dramatic thing that happened was so ordinary that people like "us" look in envy. Instead, I am thankful what I have learned but really wish for Tyler's sake and my sanity most days and Dallas sanity, that just once it would be "normal."

We are so thankful for all that Tyler has taught us. We can't express how much he means to us. Special sucks! But we have a special kid regardless of his needs. He rocks!

And for the record, last night was pretty typical of how our lives have been at night for about 4 years. I think in all honesty he has only slept through the night maybe a handful of times but I always wake up alarmed around 3 am because he hasn't showed up in our room or hasn't cried all night and I panic. Also he does get sedation meds at night. And they are heavy duty ones and NO they don't work and no we realize that it isn't normal.

Any questions after the long long post!! GOOD.. just kidding. Let me know!


Rich said...

I really hope they find something for you... No one should be afraid to sleep or the other issues you have mentioned to me.

I normally take a 1/2 pill of Ambien, but not every night, just on days / nights I can't sleep... Like days I know I'm going on an O&M trip... (Yes they are stressful! - my mind just won't shut off!)... Or say the night before a judo event (even if I am not fighting I do worry about my students!).

I do hope they has a solution a little better then major meds. Heavy duty to me, means stronger then Ambien, and thats no good for any one, let alone a child.

Are they sure the night terrors are not caused by the meds?

Preemie Miracle said...

I am not sure he is afraid to sleep as much as something is going on that doesn't LET him sleep. Or at least let him get into a deep sleep and stay that way. No we aren't sure the meds aren't giving him night terrors but it seems that the meds help him shut off at least for a little bit.

I also take an ambien. Without it my mind wanders to places it shouldn't and I don't get in a deep sleep ( like last night) and I wake up not rested. Usually I can function on the amount of sleep that Ty is allowing me.

We will find answers or we will keep doing this and hope at some point we can stay asleep!