Saturday, January 21, 2012

Sleep Study

Hi everybody! Mr. Mortimer the Moose here deciding that it's ok that I haven't written a blog in over a month. January was kind of insane for Timmy and me. But I'm glad that I have found a sliver of time tonight to write about what went on during Timmy's sleep study in December. These pictures are too crazy to keep not posting them!

Timmy's pulmonologist ordered that Timmy undergo this sleep study to see if he has any difficulties when he sleeps. The sleep study people wanted Timmy to have as close to a normal night of sleep as possible. We didn't know quite how far away from normal we would get till the night was over.

We drove about 45 minutes to Mount Washington Pediatric Hospital arriving at 8:30pm already two hours after Timmy's normal bed time. They would not allow us to arrive any earlier. Timmy was asleep the whole way and he kept sleeping while we waited in the waiting room:

Timmy's Mom and Dad were concerned that Timmy wouldn't get a normal night's sleep since he usually has a hard time getting to sleep if they put him to bed too much past his normal bed time, but we didn't really have a choice.

We were told that it would only take about a half hour to hook Timmy up to all the different machines and monitors before they would let him sleep so when we got there, we were thinking 9pm is late but we could still manage to get Timmy to sleep. Well, they didn't even start hooking him up till 10pm. I'm not sure what the tech lady was doing all that time. Maybe she was playing a particularly exciting game of solitaire. Who knows.

Finally the tech lady hooked Timmy up. They put wires on every part of his tired little body:

All the wires led to a big hard wire box that they put right next to his head (the wires weren't long enough to stretch very far which made it pretty hard for Timmy to do his normal tossing/turning and getting comfy).

Finally he was hooked up!

It took some time to get Timmy to sleep. We tried our best to do his normal bedtime routine. Timmy's Daddy read to him and I sang to him some of my favorite Moosry rhymes.

Finally Timmy went to sleep at around 11 or 11:30pm, 4 1/2 hours after he usually goes to bed. At about midnight, the tech came in and put Timmy on oxygen which was strange especially since they had said they wanted Timmy to have a typical night's sleep (we don't have oxygen on hand at home for Timmy). When we asked why the tech put him on oxygen, she said that he had desatted to 92 and that the on-call doctor said to put him on oxygen. We told her that we had not seen him desat that low but that when he's tired he typically sats low and then gradually by the end of the night he is back up to 98 or 100. We told her that we do not have oxygen at home and to put him on oxygen would certainly make it an even more not-typical night's sleep for Timmy. She said she would take him off oxygen in an hour but she never did (due to another thrilling game of solitaire?) so Timmy was on oxygen for the rest of the night.

They woke us up at 5am to make sure we were out before their shift ended at 6am. Usually Timmy sleeps till 6 or 6:30am but that's after sleeping typically for 11 hours.

So, no, Timmy did not have a typical night's sleep and it showed in the morning:

They had used a bunch of goopy stuff to make the sensors on his head stick. After they took off the sensors he looked like a tired little boy with a typical teenage hair-do:

They didn't tell us what we should use to get the goop out of his hair so the next night we tried a few different things:

A bath always seems to wash Timmy's blues away :)

Our pulmonologist said that the results for the sleep study showed that he has mild sleep apnea and also his blood oxygen saturation levels (sats) are good when he is on 28% oxygen. She said that the study showed that he needs to be on oxygen at night. We wouldn't mind having oxygen on hand at home for those times when Timmy needs to have it. But to say that he needs oxygen all the time is just silly since he typically does very well without it. If it were just us we would be happy to have oxygen on hand, but if doctor's orders are written that say that he has to be on oxygen all the time, our night nurses have to follow those directions and we wouldn't be able to have a say in it.

The danger of him having oxygen all the time is that it would mask low saturation levels if they ever drop which is one indication of when he is getting sick. This might cause a pulmonary sickness to go untreated for longer than it otherwise would have been.

Apparently no doctor's orders have been written in response to this sleep study so we still don't have oxygen for Timmy at home which is probably best. I think our pulmonologist heard our concerns that the sleep study did not end up being what we thought it would be.

But now we are still left wondering: what was the point of all of that? Why did we have to put Timmy through that headache and half a night's sleep just so they could tell us something we already knew: that Timmy saturation levels stay at 100% on 28% oxygen.

I forgot to mention that I had to insist that they put Timmy in a crib and not in a regular bed. It seemed to be a new idea to them that a one year old shouldn't sleep in an adult's hospital bed with one foot tall rails on each side. At that point he could easily have pulled himself into a standing position and hurled himself over the side of the bed. But what do I know? I'm no medical professionmoose.

Monday, January 2, 2012

What the feeding therapists don't tell you...

Happy New Year, one and all! Mortimer here. I have now awakened from my two month hibernation to write my first blog post of 2012. This was totally inspired by Timmy's first encounter with his new favorite snack food: snow.

In no time, Timmy was signing for the very first time the word "cold".

Here, Timmy is simultaneously thinking some really deep, inspiring thought and taking his first taste of this white, melt-in-your-mouth-AND-in-your-hand ambrosia.

Timmy says, "my hands are so cold but I must... have...more!"

Timmy is officially hooked after his second whole bowl. (This from a kid who, on a good day, will taste a few bites of food.)

He ate way more snow than he has ever eaten anything else (what's the calorie count in this stuff?). We are contemplating getting him a snow cone maker so that Mom and Dad can try giving him his frozen home-made purees in a fun snow-cone form.