Last November, Lydia had a sleep study done – you can read about that HERE. After the sleep study they recommended she get put on oxygen. This was a hard blow for us. We also scheduled an appointment with an ear, nose, and throat doctor as well as with pulmonology.
Oxygen
Welp, it hasn’t been working.
When they first gave us oxygen, they gave us a canister for travel as well as a home oxygen concentrator (this basically takes the air in the home, puts it through a filter, and out through a tube to Lydia). Our first home concentrator’s alarm kept going off. We did all of the trouble shooting and it just wasn’t working great. The alarm went off about every 15-20 minutes. It also was giving off a slightly smokey smell. Not helpful.
We contacted our supplier and they immediately reached out to us and dropped us off a new one. We got everything up and going and put it on Lydia and our home immediately started filling with the smell of cigarette smoke. We kept thinking if we just ran it for awhile, it would go away, but it wasn’t. Sarah couldn’t sleep the smell was so bad (her room is across the hall) and we ended up shutting it down. In Mark’s words, our house started smelling like a “smoker’s lounge”. It was so bad. And once that smell gets into things, it is so hard to get out. We don’t want our home smelling like that!
At that point we were so discouraged and just decided to put a big pause on the oxygen. Lydia did not like having the oxygen on her face and it wasn’t helping anything. We decided to wait and see what came from the follow up appointments.
ENT
Our visit in January to the ENT was a little intense. We had met this doctor before, and to be honest, he wasn’t my fave, but our second visit was so much better. He was very attentive. We went over Lydia’s sleep study and he was very concerned. He had three major concerns:
- The amount of interruptions – Lydia is having over thirty interruptions an hour in her sleep
- Strain on the heart – With having those amount of interruptions, that puts a lot of strain on her heart
- Carbon monoxide imbalance – One thing we hadn’t heard before was that the sleep study showed that Lydia had a carbon monoxide imbalance
He suggested that we do a scope to check out her adenoids and tonsils. Lydia did so well, bless her heart. Afterwards we had a good heart to heart.
Our doctor said that her adenoids and tonsils were slightly enlarged but definitely not the root problem. He said they could remove them but even that was concerning to him. He said it was rare, but should there be any bleeding afterwards, he said that problem can escalate very quickly and he was concerned about the distance we live from the hospital. But he said removing those, in his opinion, would not solve her sleep apnea.
At the end of the appointment, he said that there really wasn’t a good answer moving forward. He told us he would reach out to pulmonology prior to our visit with them.
Our reaction: We were concerned. The ENT was a lot more sober about the situation and we were worried. We don’t want Lydia to be having a nightly strain on her heart. We were found in a situation with no good answer and that is so discouraging.
Pulmonology
Earlier this month, we finally had our appointment with pulmonology. The nurse, in her words, said she could NOT handle Lydia. She was really concerned. Lydia’s breath holding has gotten progressively worse the last several months. Honestly, I don’t notice it too much anymore. But the nurse was really worried.
Also, while she was getting Lydia’s oxygen levels, Lydia was at an 88. Ideally someone Lydia’s age they want around 100. We put a foot monitor on her and things started to improve.
Once we got back in the exam room, we finished answering the questions and then waited for the doctor. She asked many many questions, and I felt a serious tone from her.
So I was really surprised at the end of our serious conversation when she replied that she did not recommend that we do anything at this time. We had talked about doing a CPAP, but she feels like it will only cause more problems for us at this time. She also did not feel like Lydia should be on any oxygen except for in times of illness. I asked her if we should get something to monitor her oxygen and she, again, recommended us not to.
I was confused. I feel like we have been given mixed signals about how to move forward with her sleep apnea, as well as the severity of the problem. As much as we love the idea of less equipment, we also are concerned about the potential strain on her heart. Also, her sleep continues to be a really struggle every single night.
Honestly, we don’t know where to go from here. The pulmonologist suggested we redo the sleep study in a year and see where Lydia is at. It seems like it’s not bad enough to do treatment, but it’s also not great either. When I asked about any potential sleep medication, she said that is not something they usually prescribe, and they encourage a more behavioral approach. But they also offered no direction on what behaviors we should be changing. It’s hard.
So for now, we are just continuing on with what we’ve been doing. Once we get settled in Colorado, we hope to readdress this problem and also reach out to our team at the Rett Clinic to get their perspective.
