December 14, 2011
by marfmom
2 Comments

Sleep Study, Take 2

We got a call yesterday afternoon, asking if I’d want to bring Baby J in for a repeat sleep study that night. The scheduler asked me why we’d quit the one on Sunday. “Was he sick or something?” she asked. “Well, he got so upset that he vomited all over himself,” I replied. “Oh…why do you think he got upset?” “Well, my guess is because the tech wouldn’t listen to me about where the pulse ox sensor should go so he had to wake J up to replace it.”

Not sure if the scheduler talked to the tech or not, but it was a very different experience this time around:

– Instead of me holding J down to get the electrodes placed, he was allowed to cruise around the crib and one tech glued on the electrodes while the other tech played “pick up the toy J drops” game. Instead of tears there were giggles.
– The tech placed O2 sensors on both feet and triple wrapped them.
– When one O2 sensor was kicked of, it was easy to just plug in the 2nd one (& he waited till J was in stage 3 sleep to do it). And when that one was kicked off, instead of replacing them the tech just added one to a finger. We went through 5 sensors.
– Instead of calling it quits after an hour or no sleep, the tech brought in a brand new, different kind of mask to try and when that was too large, he suggested we let J fall asleep with his mask on but the CPAP turned off. Then he turned the CPAP on when J was in a deep sleep.
– When, about 2:45 am, I decided J was too upset for the test to continue, the tech quickly stopped everything and got him ready to go home.

It looks like we got the data we need, but we’ll have to wait for the pulmonologist to call (probably next week) to be sure. Thanks for all your advice and Facebook support, everyone!

December 13, 2011
by marfmom
6 Comments

Santa Prep

I think I’m going to take the boys to see Santa early this afternoon, after speech and occupational therapy. The Menininho has expressed an interest in going and this way it shouldn’t be so crowded. So, this morning I decided I should prepare M for how a conversation with Santa might go.

“I’ll be Santa! Hohoho have you been a good boy this year?”
“Yesssss!”
“And what would you like for Christmas?”
“Hand dryers!”
“And what would your little brother like for Christmas?”
“Ummm….hand dryers!”

“Ok M, but do you think there are other things people might want for Christmas? What do you think Daddy wants for Christmas?”

“Want hand dryers Daddy?”
“No, I want other things for Christmas.”
“Want hand dryers Mommy?”
“No, I want toys for Christmas. Don’t you want toys for Christmas?”
“No. Hand dryers.” < thinks for a minute > “Yes!”
“What kind of toys would you like?”
“Toys R Us!”
“Yes, some toys come from Toys R Us. What toys from there would you like?”
< thinks >
“HAND DRYERS!!!!”

M as Santa, 2008

December 12, 2011
by marfmom
8 Comments

Sleep Study #2

Last night Baby J had a sleep study scheduled. I’d been having a really difficult day and was dreading it because of how little he actually slept last time. The purpose of this study was to determine what level J’s CPAP needs to be on. Right now he’s on a 4, which is the lowest setting, but his pulmonologist is fairly certain that is too low a setting for the severity of his apnea.

Things started out ok enough. As you can see, J was happy to be there.

That didn’t last long once the tech started getting him hooked up to everything though.

Now, I knew having a pulse oximeter was an important part of the study. We’ve had a lot of trouble getting J’s to stay on him at home, but a reader recently suggested using medical tape to wrap it around his foot, where it can’t be kicked off. I asked the tech to do this but he refused, instead wrapping the sensor around J’s toe.

Surprisingly, it didn’t take me too long to get J to sleep, even being unable to nurse him well because of some of the short cords. I gathered up my laptop, phone, and a snack and headed to the parent lounge. No sooner did I get into the hall then the tech stopped to tell me that – SURPRISE! – the pulse ox sensor was off J’s foot and he’d have to place a new one on his finger. Also, there was a leak in the seal of the mask and it needed tightened.

None of that went well. Sensor ended up back on the toe when the finger didn’t work. The mask was tightened and J was even more angry. I don’t know how long I tried to get him back to sleep. I’d heard about kids getting so upset they threw up, but I guess I viewed that as an urban legend…until tonight.

I called the tech and informed him we’d be going home, he helped me clean J, and we were walking in the apartment before 10 pm.

I don’t blame the tech for Baby J getting so worked up, but I am frustrated he wasn’t willing to work with me on getting the pulse ox to fit. And now, I doubt we’ll be able to schedule another sleep study before the move, since they’re only on Sundays and I’m not doing Christmas or New Years. This is frustrating because the longer J isn’t on the right setting, the more stress his aorta is under. On the flip side, I’m planning to night wean him as soon as we’re settled in the new house, so being night weaned may make any subsequent sleep studies easier…?

Sigh.