Sleep Study, Check!

It feels GREAT to check this one off my list!!!

It even makes it worth the crappy night's sleep I got! And it nearly didn't happen, so that makes it that much more of a relief. Despite keeping Ainsley home from school and limiting our exposures by keeping her home she got a low temperature this week for no apparent reason (no real sickness in the family, she'd not been sick and limited exposures) and I thought we might have to reschedule. Her throat was red so I took her in to the pediatrician and they checked her tonsils, which though quite red, were not as bad as they looked to me. They did a throat and trach culture which we later found were negative for nasties. She had fluid in her ear, but that's typical for her. These sleep studies are booked out 6 months so you really don't want to reschedule. Luck was on our side and though her temp came back Sunday afternoon it was still under 100. and her breathing and sats seemed normal so it was okay to go. Looking for that brief moment of perfect health to coincide with a procedure, test or surgery is like waiting for a blue moon.

We did a lot of prep to ensure that this sleep study went well and that she would wear the CPAP so they could evaluate whether it's a legitimate option for her.

During the previous week or so, when she was able to wear her cap again, we brought out the machine and got her used to wearing the mask, working up to sleeping with it on. We tapes some wires on her face so she could see what it would be like. Children's also sent along this presentation that showed pictures of a child having a sleep study. I think that was very helpful and went a long way toward making this a less frightening experience for Ainsley. During the week I kept telling her we would be going and why.  We reviewed the pictures again right before leaving for the hospital. It really helped.

You'd think we were leaving for a week. It's so great to be so loved!

She was pretty happy to be going. Then when she saw the tech in her scrubs and the room that looked still a bit like a hospital room, she was more somber.

It was almost like going to stay at a hotel. Okay not quite.

She got to watch Tinkerbell on X-Box while she was hooked up. I was too busy completing pages of paperwork and answering questions to get pictures until it was done.

The stuff they use.

Here she is all done. There were wires stuck all over her head with sticky putty, on her cheeks and chin, chest, arms, legs, back. In addition there is a pulse oximeter on her finger and a nasal prong that measures airflow at the nose and mouth. Then they wrapped her head all up with gauze to keep it in place which was smart though perhaps uncomfortable. Can you believe how many wires there are?! All this information is sent to a tech room down the hall, and recorded by a computer. They have a camera that can see in the dark, and they can hear everything in the room. She is fully monitored on every level but since the equipment was in another room, I really don't know the specifics of how she did.

She was tired so after she was wired she was ready to sleep. The bed was large enough that I could get in with her and hold her hand. That helped. As you can imagine she didn't love all these wires. She only cried a little while they were put on. But then she fell asleep fairly easily. The bed is about as comfortable as a hospital bed.

Things went about how I expected. With the cap on her trach she has obstructive sleep apnea, and I knew this from many home trials over the past 3 years.  At this point it is the primary reason that she still has the trach. After 20-30 minutes she started to breathe heavily, and her chest would heave trying to get enough breath (retractions), she would rouse and breathe better. Then she would fall back asleep right away and the process would start over. They wanted to let that continue so they could gather test data. I think she understood why she was there and kept the cap on for a full two hours, which was what they wanted. At home she would just yank it off and throw it.

After the 2 hours, they put took the nasal prong out and put the CPAP mask on to start the CPAP portion of the test. I wasn't able to get pictures, but this is an old picture so you can see what the mask looks like.

After all that fighting to get her a full face mask last year, I was a little annoyed to hear from the tech that it is typical that people who mouth breathe need a full face mask, as if that was common knowledge.

Here is where they keep some of the equipment.

Last winter she'd been able to sleep a whole nap with the CPAP(capped). This week it actually didn't help her, she struggled to breathe and woke up and I had to remove the cap. So I had a brief panic attack thinking that the sleep study would be done in vain. But after some research I found they'd put her on the lowest setting but they would be able to go much higher during the study. During the sleep study they kept a close eye and ear on her and each time she struggled they would increase the CPAP pressure. I know at one point she was up to 7 (and only on 4.0 at home) although they can't tell me the final results, I don't believe she ever got to the point of needing BiPap. She was able to keep the mask on until 6 am when she signed to me "off". It was 6 minutes until the study was supposed to be over anyway so we took the mask off and boy was she happy! Though it took awhile longer to disconnect everything.

She was so happy and gave me lots of hugs. When we got home she was so happy to see her Dad, brother and sister who were getting ready for school.

It was a successful study, but a really awful night's sleep. I held her hand the whole time and she woke me 20 times. We're exhausted. I think the stress caused her to spike a fever.

So now she is sleeping on the sofa. It is so nice to see her sleeping peacefully. We'll get the goop out of her hair later. After a few weeks we should have the data. In December we have an appointment with her Pulmonologist to discuss our next steps. It's hard to think of making her sleep with the mask on for the rest of her life, and I'm really not sure loosing the trach is worth it. In addition her craniofacial team wants to see her after the sleep study. They have given the okay to schedule frontalis sling surgery and likely we will discuss her under bite and how that might be affecting her sleep. So these are some of the pots I've been watching and stirring. That and we are planning a trip to Cincinnati, likely in the spring to get a second opinion about her airway. I think in some ways this is a relief to our ENT who doesn't want to make a wrong decision.

Now we just wait and weigh our options which are:

• Do nothing and keep the trach as long as needed.
• Work toward the goal of taking the trach out which means using CPAP for sleeping.
• A cricoid split or other airway surgery, which carries risks.

Hopefully over the coming months we'll be able to make some big decisions. For now I'm going to take a nap. And try not to obsess about it. Life still has to be lived.