So you all know that Fiona had a sleep study on March 8th. We had to wait until April 17th at airway clinic to find out the results. And they were definitely NOT what we wanted to hear. They wanted to repeat the sleep study. Seriously, what? A THIRD sleep study? The results of the second one showed an apnea index of 17. Which means she had 17 apneas AN HOUR. She had mixed, which means both central and obstructive. I think I have explained the difference before, but in case you missed it: central sleep apnea is when your brain periodically stops sending signals to tell your body to breathe. Obstructive sleep apnea is when there is something causing your airway to close or be partially blocked (most adults have this kind). There is a question as to why Fiona would have either type of apnea. A lot of preemies have central apnea, but most have grown out of it by this age. And it's pretty uncommon for a kid with a trach to have obstructive apnea since the trach is actually holding the airway open.
Hearing that she was going to have to have a 3rd sleep study was a far cry from the words that we were hoping to hear. So a few days later they called to schedule the sleep study and said the 1st available appointment was July 5th. Are you kidding me? So they put her on "high priority" on the waiting list. It got moved to May 21st which is a bit better. Then he calls me Thursday night (April 26) and asks if we could come the next night (Friday, 27) so of course I said we would be there. I don't think I was fully prepared, but I knew the sooner the better.
So here is a night in the life of a child getting a sleep study:
5:30 pm- Arrive at hospital and get admitted.
6:00pm- Get to her room and watch her sad face as she realizes where she is.
6:15-7 pm- Answer lots of questions, tell history and meds, see 5 different doctors and nurses.
7-8:30 pm- Try to keep a 2 1/2 year old entertained, go eat dinner in the cafeteria and visit with NICU nurses :)
8:30-9:30 pm- Hold Fiona down while all the probes, leads, and sensors are being put on her.
9:30-10 pm- Try to distract a tired, crying child while tech is finishing setting up.
10-10:45 pm- Rock Fiona to sleep.
10:45 pm- Try to put Fiona in crib, but accidentally put her head on top of all wires, Fiona wakes up.
10:46-11 pm- Rock Fiona back to sleep and successfully put her in crib.
11:15 pm- Tech comes in a tells me to put cap on Fiona's trach.
11:20 pm- Tech comes in to fix a wire.
11:25 pm- Tech comes in to fix a probe.
11:30 pm- Tech comes in to fix a sensor.
11:45- Tech comes in to do who knows what, Fiona wakes up.
11:45- 12 am- Give Fiona bottle and pat her back to sleep.
12:30 am- Fiona wakes up coughing, coughs so hard she throws up, falls back to sleep.
12:45 am- Fiona wakes up, give her bottle and pat her back to sleep.
1:15 am- Fiona wakes up, give her bottle and pat her back to sleep.
2:00 am- Fiona wakes up, give her bottle and pat her back to sleep.
2:30 am- Fiona wakes up coughing, coughs so hard she throws up, Tom suctions her.
2:31 am- Tech comes in and yells at Tom for taking the cap off and suctioning her.
2:32 am- Clean Fiona up and change blankets.
2:35-2:50 am- Rock Fiona back to sleep, have to lay her on wires because she is SO tangled.
3-5:30 am- Is a bit of a blur...
5:30 am- Tech comes in to start taking off all wires/probes/sensors, hold Fiona down for this.
6:30 am- Leave hospital and drive the 2 1/2 hours home (well, poor Tom drives while we sleep).
We have an appointment scheduled for Airway Clinic for May 15 so we will find out the results then. From the bits and pieces that the tech told me, the last one was not a mistake (they were thinking it was a possible machine error). If this is the case, then comes the task of figuring out why she has so much apnea and what needs to be done about it.