One step forward, two steps back

I think I need to change the background on this blog because anything that says lucky on it is NOT fitting. One step forward, two steps back (and I am NOT referring to a country line dance). Emma is doing great rolling over; Emma stops breathing in her sleep. Emma’s eyes are adjusting well to the glasses; her decompression surgery will most likely be moved up because of the apnea.

As you can tell, we didn’t have a great visit with the sleep doctor (Dr. Gault), and it’s only going to get worse. Emma does show signs of central apnea, but it’s not as bad as it could be. Her oxygen dropped too much during the sleep study a few weeks ago, but the good news is that her carbon dioxide (what you exhale) stayed low. That means she’s not retaining too much carbon dioxide. In the long run, this disruptive, unhealthy sleep could affect her heart; in the short run, the doctor’s not even concerned about that because we’ve caught it early. Thank goodness we decided to contact the sleep doctor; I was just curious if maybe Emma had some sleep issues. As if I needed to be reminded, always trust your instincts!

Emma’s apnea isn’t like the sleep apnea that most adults experience. A totally different beast, actually. Her brain doesn’t tell her to breathe regularly – this is central apnea. When there’s an issue with your airway or your lungs opening properly, this is obstructive apnea. Similar to patients with obstructive apnea, she will wear a mask at night; however, the mask will only blow oxygen in when she needs the air. It will allow her to breathe on her own, but if her rhythm is off, it will push oxygen in for her. The exhale pressure will be very, very low since she does this just fine on her own. The other problem that the doctor saw was that during these episodes of severe apnea, her catch-up breathing was very shallow and not very rhythmic. The short-term purpose of the mask is to help her breathe and sleep healthily; the long-term purpose of the mask is to retrain her brain on how to sleep correctly. This retraining won’t actually happen for at least 9 to 12 months. There is also a chance that it won’t “stick.” There are some not-so-great options and what-ifs later on down the road, but I just can’t go into that right now. I know what they are, and I have grieved over them; now it’s time to only worry about the present with the long-term options in the back of my mind.

Next step: another sleep study, IMMEDIATELY. On Monday night. First night sleeping with the mask on. The doctor told us that it will most likely be a 2-man job. After that, they’ll be able to tell us exactly what settings to put her little machine on. In the meantime, we have a practice mask to try to put on her for 5 minutes at a time, a few times a day. Good luck with that, right? Does anyone know of someone who would work for free all day every day and whose sole purpose in life is to keep Emma’s glasses on and help her get used to her mask? No? Just thought I’d ask.

Speaking of glasses, the ophthalmologist feels that the glasses are doing their job. I couldn’t really understand if he thought there was an improvement in her eyesight or just that they hadn’t gotten worse. After being inundated with information from 7:30 am to 9 am about the sleep issues, I’m lucky to have even remembered how to get to the eye doctor. Oh, slight bit of good news (I hope): Nan got Emma a pair of old display glasses from our sweet nurse, Misty. Missy? Missy. Anyway, Mis(s/t)y gave Emma some glasses to play with so that hopefully she won’t be tempted to play with her own. Dr. Johnson, the ophthalmologist, asked us how our day was going, and I told him it wasn’t a good day to ask. I briefly filled him in on the details of the sleep issues. As we discussed Emma’s eyes, he told us several times that Emma’s eyes are doing as well as they are because of our diligence with the glasses. He commended us for our hard work and told us to keep it up. I don’t know if he would have reiterated this point so much if I hadn’t told him what a rough day we had had, but it was nice to know that we’re doing something right to help Emma.

As for Emma herself today, she was a trooper. She was exhausted because she didn’t fall asleep until 9:45 last night. She miraculously took 2 naps yesterday for a total of 2 hours and 40 minutes, so she was a night owl last night. Needless to say, our 7:30 am appointment came early for her. If we can ever get her used to sleeping with the mask and she can actually sleep through the night with it on, Dr. Gault told us that she’ll be much more well-rested, lively, and vivacious. Oh my word. About that free help again…I don’t know if my mom and Mama Jan can survive a livelier, more vivacious Emma. Aunt Eva will be able to keep up, I believe, but I don’t know about the Grans. Mama Jan suggested that they get CPAP machines for themselves, just to be able to keep up with Emma! I also wonder if Emma will catch on to physical therapy faster and if she’ll start talking more.  Lord help if she does...

Dr. Gault believes that the results of the sleep study will most likely cause Dr. Troup to move up the time frame of the decompression, maybe even sometime in the next month. Emma has a routine CT the morning after the sleep study (yep, can you believe it? Shoot me.), and then we see Dr. Troup the following week. Dr. Gault also gave me some pretty explicit instructions about notifying him anytime Emma is sedated or in the hospital. Add one more to the list.

My emotions have been on a roller coaster ride today, and to be honest with you, I’m just kind of trying to be in God’s presence rather than talk to Him. Does that make sense? I feel so defeated and exhausted that I don’t want to talk to Him about it, just BE with Him. He knows my thoughts and my feelings, and He is a faithful God who will be there just to hold me if that’s what I need. He holds Emma every day, too, so I’m just asking Him to share the love.

PS – Dr. Gault looked down Emma’s throat at her tonsils, and while he was poking around, he noticed that one of Emma’s canine teeth is coming in. Number 5, order up.