Sleep Study

I have mentioned it many times before, but sleep is a struggle for Lydia. It always has been. And things have definitely been difficult lately with that. We started using melatonin in September and there was hardly any change. Lydia would fall asleep more easily, but other than that, it was the same routine. Usually around 10:00 we start the routine of waking up various times throughout the night. Sometimes it is just two or three times, other times more. Sometimes it is a relatively quick fix, other times it is hours each wake up. Trust me when I say, we have tried every thing we can think of to find “triggers” or anything else to help our little lady sleep better. But we haven’t and it is hard. It’s hard seeing her so exhausted all the time – and it’s hard for Mark and I – especially when it feels like there is no end in sight.

So at the end of October, we met with our developmental pediatrician in Salt Lake to check in on a lot of things, but out biggest concern – SLEEP. She had initially mentioned prescriptions that we could try, but after further discussion, she felt like we needed to get a sleep study done for Lydia so we had a better picture. We agreed – as much as we wanted a good nights sleep, we wanted to know as much as we could. The two biggest concerns for Lydia were seizures and breathing. Lydia hasn’t had any seizure activity but it is a common problem for children with Rett Syndrome so it is always sitting there on the table. But Lydia has been doing more breath holding lately and so this seemed the most likely culprit to us. Breath holding is also another very common problem for kiddos with Rett.

I immediately called to schedule the sleep study and the soonest they could get us in was the end of January. We were so discouraged but you do what you have to do. Then not two weeks later at about 2 in the afternoon, I received a phone call that they had a cancellation and could do Lydia’s sleep study that night! Of course I said yes and we just made it work!

It was such a blessing because Mark had that night and the following morning off of work and so Lydia and I could go over to Utah without taking all of the kiddos. I ran around gathering all the things – you would think for just a one night stay in the hospital you wouldn’t need a lot, but Lydia doesn’t travel light these days – and we were responsible to bring all of our own equipment.

So Lydia and I made the familiar trek to Utah. We went over to my parents and had dinner and then made our way up to Primary Children’s Hospital. Her sleep study was scheduled for 8:00. The sleep techs were so nice and got us settled in our room. There was one other kiddo getting a sleep study done and they asked if it was okay if they got them set up first. I said that it was and it actually worked out fine since I needed to get all of Lydia’s G-tube things set up.

Once the techs came back to set up Lydia – the fun began! There was a LOT of hands on Lydia. There were cords on EVERYTHING. All over her head, chest, hips, legs, feet – it was a lot. I sat on the bed and held her hands so she wouldn’t pull on anything while the others busily put everything on. Lydia did great to start but things took a turn about half way. And I honestly couldn’t blame her. It was almost ten o’clock at this point (WHY do they have a children’s sleep study start so late I will never know!) and it was a little overstimulating for me to watch so many hands touching her, I can only imagine how she felt.

They finally got everything up and going around 10 and told me to do what is “normal” for her sleep. It ended up being a big blessing that they put her in a bed (I was a little nervous at first – it was her first time) because then I could lay down by her. It took some time to get her calmed down and Lydia was not a fan of the oxygen tube. I got her to go to sleep and then the night got really long.

I no sooner had gotten her settled down and laid down on my couch for the night, when the tech came in because one of the probes wasn’t communicating. That, of course, got Lydia up again – they fixed the probe and left – and I spend the next while calming Lydia down. Repeat this process what felt like a dozen times.

Also, Lydia really pulled out all the stops when she threw up in her sleep.

The techs were so nice and really tried to be quiet but it was LONG. No sleep was happening.

FINALLY, about 2:00 in the morning, Lydia fell asleep for a decent stretch of time. She woke up a little before 5 and the techs came in shortly after. The sleep study ended at 5 (again, the timing seemed so weird to me).

Lydia was completely content to have everything taken off of her and luckily it goes by significantly faster than putting it on. I got things packed up – and I should get a hoo-ra for managing to push Lydia’s stroller with two bags, blankets, and pillows all on in one trip! And then we made the trip back home.

All the techs told me about the sleep study in the morning was that they had put Lydia on oxygen. Oxygen is something they monitor in the test and they put the oxygen tubes on but don’t start it at the beginning of the study. I guess that stretch when Lydia slept in the early morning they had decided to start it. I wasn’t told more than that.

On the drive home, I tried not to worry. I was worried Lydia was going to be put on oxygen (the techs told me that just because they had during the night, didn’t mean that this was the course moving forward, but I was still nervous). And then began the waiting game. I was told we should get a report from the sleep study within two weeks. Unfortunately, Thanksgiving week was right at the two week mark and so things took longer.

I received a call from our developmental pediatrician’s office saying they wanted to schedule an appointment. This never feels like a good sign. We were able to get a telehealth appointment for the next day.

And Lydia has another diagnosis. She has moderate obstructed sleep apnea. It is the most common breathing sleep problem but it is still hard to get yet another diagnosis. Basically, Lydia is starting and stopping breathing while she sleeps – that is the apnea part. The obstructed part means that her throat muscles relax and block the airway while she sleeps. The moderate part means that she is having breaks in her breathing 15 to 30 times an hour.

I don’t like it.

Our doctor said Lydia’s oxygen went up and down throughout the study and she needed to be put on oxygen immediately. I hate that.

Everything is relative, right? And I know that we have breached that zone of “normal” for others and so this probably shouldn’t feel like a big deal. But it feels like a big deal to me. I hate that Lydia will now have to have a tube going from her tummy all night long and now add oxygen to the mix. I am grateful for all of these developments in medicine that can make her life more comfortable, but oh goodness, it is hard.

The question lingering now is, WHAT is causing the obstruction? It could mean several different things (most would involve surgery of some sort) or it could be because of her low muscle tone. So basically, when she relaxes her body doesn’t have the strength to keep the throat open. I am worried that this is the cause. Lydia’s tone is so low (and we are noticing more regression lately) and I just don’t know where we go from here.

We will be meeting with an ENT (ear, nose and throat doctor) who will examine her and see if there is anything structurally wrong.

Lydia is so incredibly strong. She keeps going every day and does it with a smile. She brings our life more joy than I could ever express. And I hope and pray we can do everything we can to make her as comfortable as possible.