Last week, Lydia had her long awaited EMU stay (EMU stands for “Epilepsy Monitoring Unit”). I had been dreading this visit ever since I found out about it. I just felt uneasy about it. Here is how it went…
ENT
Before we were admitted to the hospital, Lydia had an appointment with a new doctor in the ENT department. Lydia had an ENT we worked with at Primarys in Utah, but we had never connected with anyone here in Colorado.
I really loved the ENT. The point of our visit with him was to check Lydia’s tonsils and adenoids. This was a suggestion made by Lydia’s pulmonologist back in August. She had them checked probably two years ago so it had been awhile.
And, of course, there was no straight answer. He said they were slightly enlarged but there wasn’t a definite need. However, he did say that he believed getting them removed would help her sleep and possibly reduce or eliminate her need for a CPAP or oxygen. We spent a long time going over the statistics of it all and he believes there is an 80% chance that it would eliminate her need for a CPAP and oxygen. Those are pretty good odds!
We also spoke of risks. Normally, tonsil and adenoid surgery is pretty easy peasy, but with Lydie it is more complicated. Lydie doesn’t do great under anesthesia (we’ve learned this from the past) and he was concerned about her heart. There is a bleeding risk and he said the two weeks after our going to be brutal.
With all that said, ultimately, we have decided to move forward with the surgery. In ways, it was a hard decision. This will be Lydia’s third surgery and my heart hurts to put her through something else. The risks are nerve-racking but the possibility of helping her breathing problems is an incredible thought. The ENT is planning on having a cardiac team overseeing her entire surgery and overseeing her post-op care. We are also planning on staying at least one night at the hospital so they can monitor her and he was honest in saying there is a good possibility she could be admitted to the ICU. All of those things are hard.
EMU: Day 1
After her appointment, we went and ate an early lunch and then came back to be admitted. Before I get going, the point of this visit was to monitor her ESES at night to see if there is any improvement since they changed her seizure medication in September. This is a stronger med. However, if they didn’t see improvement, we then would have to discuss what steps we wanted to take. None of the options they were giving sounded good. And I was dreading that part.
BUT Lydie did so well! When they were putting all of the sensors on her head she was GIGGLING! I couldn’t believe it. She was so happy and pleasant.
We had a great afternoon and evening. Lydie was in such good spirits! She fell asleep early and slept the ENTIRE NIGHT. I was shocked. It was easily the best night she has ever had at the hospital. What a blessing.
EMU: Day 2
Day 2 started out really well! Lydie was happy and snuggling and we had a great morning.
They came in and did “rounds” around 10. It was also a big blessing because Lydia’s epileptologist was on the floor the week we came and so she was a part of Lydia’s daily care. She told us that they saw no improvement in her ESES from the previous night – she is still having epileptic discharges 94% of the time while asleep.
I wouldn’t say I was surprised, but I was disappointed. And this led us into a tough conversation – which is how far do we push medication to get it under control.
Initially, they wanted to put Lydia on a high dose of valium which they believed would help control her ESES, however, it would also mean Lydie would basically sleep the vast majority of the time. I did not like this.
There was also concern about Lydia’s abnormal EKG from the month before. While they were in the room doing rounds, the tech crew from the cardiology unit came in to repeat her EKG.
Ultimately, her epileptologist felt like it was unwise to start her on such a hefty medication with a possible heart issue as well as a surgery coming up.
So we decided to add another seizure med (so now she has two). She is remaining on the one she is on now to continue to manage her daytime seizures. And they are starting her on a second seizure med which is more powerful than the other that she will take before bed to hopefully help with the ESES.
We will have to have another EMU stay in a couple months to check what is happening again.
The rest of the day went fine. Lydie seemed a little more tired than usual but she was happy and good! After dinner, she was EXHAUSTED though. I could not keep her awake.
Sleep Study
This was not ideal because Lydie had her sleep study that night. Luckily, the NP was able to move things around so they could do Lydia’s sleep study a night earlier than originally planned.
This was BY FAR the most dreaded part of this stay. Our past experiences with sleep studies have been horrible. I wish I could say it better – but that’s how they have felt. The point of this sleep study was to determine what levels her CPAP should be on. In August, when Lydia had her last sleep study, they determined that her need had increased and oxygen wasn’t enough and she now needed to be on CPAP.
I was really worried about this for several reasons. The biggest was that Lydia spits up a lot during her sleep. And I didn’t understand how that would work if she had a mask on her face. It terrified me.
I also just did NOT see the point of this sleep study – especially since we had decided to get Lydia’s tonsils and adenoids removed. Wouldn’t they just have to have another study after her surgery to see if there was improvement?
When the sleep tech came in – it was the same one we had back in August. She asked me if I had any concerns and I told her all my thoughts. She helped me feel seen and heard. She seemed to genuinely agree that the order of things didn’t make sense. Because Lydia WOULD have to come back in and have another sleep study after her surgery. It just felt like an unnecessary step. She was also worried that my other concerns had not been addressed by our pulmonologist. She asked if she could reach out and speak with the on-call pulmonologist and get their take on the situation.
I was so relieved when she went out to call. I felt like the study would be cancelled and I was happy about that (remember my large dislike for sleep studies!).
So I was shocked when the sleep tech came in – in a much different demeanor- telling me that this is very safe and that the CPAP will only cover her nose, not her mouth, and so spitting up wouldn’t be an issue. She said she still didn’t understand the point with the upcoming surgery but thought the reasoning might be that they just wanted to get her started.
So we went forward. And I cannot tell you how much I regret that decision.
Lydie absolutely hated the CPAP machine. She was gasping and thrashing back and forth. She was doing everything she could to take it off. She was holding her breath so much that they had to do an oxygen blow by for her. And then the tech told me I needed to hold her down.
If I could go back in time and do this night over I would change so many things. I would have just said no to the sleep study.
Instead we did it. And it sounds dramatic, but it felt like the worst thing I have ever done as a mother. Listening to Lydia gasping and struggling for hours and hours while I was told to restrain her by holding her arms and legs down was horrible. And then it went even further. They told me to force her mouth closed so she would have to breathe through her nose.
She was miserable. And looking back on it, I honestly feel like it was abusive. She clearly did not want to do it – and we should have honored that. Lydie never would calm. I sat on the end of the bed all night, holding my daughter down, silently crying, wondering what in the world I was doing.
The tech even came in and said she was uncomfortable with it. She called the pulmonologist again and we were told to continue on.
I just prayed all night for time to go faster – to just make it end. I prayed for Lydie to understand what we were trying to do. But it was the worst night.
Finally a little before 6 in the morning, the tech came in and shut it off. As soon as she took of the CPAP, Lydia was instantly asleep. The poor little thing was completely exhausted. She slept for hours.
EMU: Day 3
I was not in a good mental state that morning. I was obviously physically exhausted, but more than that, I felt completely broken from what I had done and put Lydie through. I called Mark and he told me he was going to come down. We had hoped he would come the day before but the older kiddos were getting over a cold and were coughing a lot. But they seemed to be doing better and felt like they could come down and just stay masked in the hospital. I was so relieved to hear that they were coming.
Lydia slept on and I realized I needed to push for some things when rounds happened again.
First, what are the long term effects if we can’t control Lydia’s ESES with medication? Second, on Lydia’s online health record her EKG results came back the same as before. I tried really hard to keep it under control with that and not spiral into a dark place. I knew I needed to push for her to get an ECHO. And third, I needed to ask for help.
What became so apparent this visit was that we have A LOT of balls juggling in the air right now with no clear direction. Lydia’s ESES is not being managed and is a neurology problem, she needs her tonsils and adenoids removed which is an ENT problem, she is throwing up while which is a GI problem, she is struggling with her breathing which is a pulmonology problem, and all of that puts strain on her heart which is a cardiology problem. That is just with her sleep! And none of these departments are talking to one another. She is one little girl and needs to be seen as a total person. Instead, we are just chasing all of these different things and going in circles.
I put on my big girls pants and I did it. I shared all of my concerns and we got some answers and a tiny bit of forward momentum. And then they told us we could go home. I was not expecting it but I was grateful.
Lydia slept through everything that morning. Once the “team” left, I called Mark and told him we were being discharged and he said they were about 10 minutes away. Lydie was so happy to see her favorite people. She lit up when her brothers and sister came in the room (and her Daddy, of course!). I was so happy they could be there for her.
We were finally discharged and we caravaned our way home by mid afternoon. I gave Lydia a bath (EEGs are brutal on your hair) and then she crashed into another nap. She seemed warm and managed to come home with a 102 fever but she was so happy to be home.
Once all of the kids were in bed that night, Mark and I had a long talk. I shared the details of the night before. And it hurt. It hurt because we put Lydie through a traumatizing night for absolutely nothing. They told me that morning: “at this time, there is no need to move forward with the CPAP until after her surgery.” I honestly thought I was going to lose it. There was truly no point in what we did to her that night. And I should have stopped it.
There was no change in her EKG or her EEG which means further measures have to be done.
It was hard and discouraging to think of all of that physical and emotional toil for nothing.
I won’t share the details of that discussion Mark and I had. But we love our girl so much. And we plan on being more selective about what we put her through in the future.
I want to end with thanking the many, many people that were praying for us. We felt them. There is so much power in prayer. Thank you for loving our girl. She is the best and she does her job so very well – she points us to Him. I am grateful that Lydie is understanding and forgiving of the many mistakes I make. She is an angel.
