Sleep Study

Last week we had a sort of unexpected night. Lydia has been on a wait list for a sleep study for several months now and we got a call around lunch time asking if we could take the spot for that night and we did! Of course, it was a night Mark was working, but we are so blessed to have such wonderful friends who were willing to take the older kiddos so Lydie and I could go down to the hospital for the night.

This was Lydia’s second sleep study she has done. The first was at Primary’s almost two years ago. And it was not either of our favorite nights. It was hard.

BUT I was really truly hopeful that this was going to be a more positive experience. There were a couple reasons for this second sleep study. The first was Lydia’s oxygen levels. At her last sleep study they determined that she has obstructed sleep apnea and it was recommended that she be put on oxygen at night. What should be not a very big deal has been extremely frustrating and an {almost} two year battle.

First, in Rock Springs, all of the oxygen machines we were given smelled heavily of cigarette smoke. Then, and this is definitely the biggest one, Lydia cannot keep the nasal cannula on. Once we moved to Colorado, they put Lydia in a “desensitizing” clinic to help her tolerate it. But I never really felt like Lydia was very anxious about the cannula. The problem is that at night, her body is moving. When she is falling asleep, her head rubs back and forth and the cannula comes out. OR she does a lot of mouthing, and even with her arm braces, she raises her arms up to her face and hits it off. Between all of these things (and buying all of the “helps”) Lydia has never had a successful night. And it’s honestly something we don’t even try anymore. She needs her sleep and I need my sleep and so we just gave up. We asked for more suggestions from her pulmonologists and they didn’t have any more. So we’ve just had a giant oxygen machine in her room collecting dust and I feel guilty every night wondering what to do about it.

The second reason for the sleep study came this spring when Lydia began her seizures. Her specific condition (at least from my understanding) doesn’t usually respond to seizure meds very well. But they wanted to do another overnight EEG (since that is when her brain is spiking) to see if there was any change from when she was admitted in May.

Going in, I didn’t really expect any new information with the seizures. BUT I was really hoping that they would conclude that she didn’t need oxygen anymore and we could turn that page on the whole frustrating matter.

Lydia and I went down to Denver and all was going well. They had us check in an hour earlier than Primary’s and so I was hopeful that the “setting up” part would go smoother.

It didn’t.

She was given a trainee. Now, I already feel horrible for saying that because it implies that I don’t support helping people that are in training. Quite the opposite. In fact, I remember saying several years ago that we love to support people as they are learning. However, ever since I said that, we almost always have a trainee and it makes it really hard on Lydia.

Lydia requires A LOT. This was her bag – for just one night.

The sleep tech who was helping Lydie was really struggling. Putting the sensors on Lydia’s head for her EEG took a very long time. I don’t think there was a single one she didn’t have to change two or three times. Lydia was an absolute angel. We checked in at 7:15 and the tech didn’t leave the room until 10:00. That is absolutely crazy to me. Lydia was definitely more patient than me. She never made a peep and other than losing some head control (the poor little thing was so tired) she did amazing. The tech made a comment that really bothered me about Lydia and I was definitely ready for her to go.

I also got a little frustrated when they put a nasal cannula on Lydia. I was confused because the main reason we were there was to see if Lydia still needed the oxygen and I didn’t understand how we would know that if she was on oxygen all night. The tech didn’t really answer any of my questions and just told me that that was “the orders” and if I wanted to stop the study I could reach out to our pulmonologist and do it another time.

It was late and Lydia was exhausted, so I shut off the light and tried to get settled down so Lydie could go to sleep. She fell asleep pretty quickly but her breathing sounded very labored to me. I was worried about her and could not fall asleep. Her breathing was off and then she would breath hold (which she does quite a bit but it felt more pronounced because of her heavy breathing). After she would breath hold she would gasp and then start gagging and ended up throwing up. This cycle repeated three times. I could see that she was scared – when her eyes have that look it scares me so much. The tech came in and asked if this was “normal” and if I wanted Lydia to be seen. I told her about my concerns with her breathing which then turned into a very condescending conversation about how oxygen works. Oh goodness, I would think after a week I would have calmed down a bit but oh it was frustrating.

I hated seeing Lydia in such distress. I hated that she was scared and didn’t understand what was going on. I hated that she was in this situation at all.

More than once the tech asked me if we wanted to go home and reschedule for another time. And it was so very tempting. But I didn’t want to have to come back and put Lydia through it all again – so we stayed. There were so many prayers uttered in that room that night. And those prayers were answered. Finally, around 1:00 AM, Lydia fell asleep peacefully.

The night was difficult. The tech came in several times and each time I had to settled Lydia back down. I will never understand how they are trying to replicate your “normal” sleep when they interrupt so many times.

At 6:00 AM, the tech turned on the light and Lydia and I were abruptly awoken. She unplugged the many many cords on Lydie and then left us to gather our things. We were out by 6:40 and so happy to be on our way home.

Yesterday we got the results back from her study.

The EEG results didn’t show any significant changes from her EEG in May. The only difference was a slight increase in her spikes – she went from 91% in May to 94%.

The pulmonology report showed a little more. The most important thing I learned from reading the report was that the oxygen was not put on when they hooked her up. I so wish that they had explained that to me that night. They had just set up the cannula so that she could easily have it turned on if necessary. Her oxygen did dip down enough around 4:00 AM for them to turn it on. My guess is that they will want to continue to have her on it. I have asked for an appointment with pulmonology to go over her options and to make sure I am understanding the report correctly.

Overall, now that we have gone through two of them, I think I can safely say that sleep studies are not our favorite thing. It was a long, difficult night and I hope we found some answers or clarification for how we can best help Lydia moving forward.