More from November...Sleep Study Number 2 and Aunt Caryl's Funeral

On the Monday after Thanksgiving, Em and I hit the road again. (Yes, we do that a lot.) My Aunt Caryl had passed away, so we were going back to Illinois for her funeral. Things got a little complicated, however, due to the fact that Em had a follow-up sleep study already scheduled for that Monday night---in Iowa City. But I was supposed to sing and play the piano for my Aunt's funeral, and I really did NOT want to do that without practicing with the person I was playing for (my sister, Joy), so I really needed to go to Illinois, too. So...we left home after Emmie got out of school, and went to Illinois, where we stayed for about 2 hours---long enough for Joy and I to practice until we were both comfortable with the songs, and then Emmie and I headed to back to Iowa again, to the hospital in Iowa City.

The idea of a C-Pap Machine isn't new to Emeline; Bill uses one every night. She has messed with his more than once, putting the mask on herself, or on her baby doll. So I had hoped that it might not be a HUGE ordeal, getting her to wear the mask. Well, she screamed a good while and kept trying to take it off, but she eventually wore down and gave up. It was definitely another one of those times where I wished she was able to tell me what she was thinking/feeling. (Other than, "No, Mom, No! Hep, Mom! Noooooo!" That is just heart-breaking. We have been through it too many times to count, and it never gets easier, even when you know it's something your child NEEDS, and something that will HELP them.) Anyway...I *think* that she was scared because she couldn't feel her nose, when she had the mask on, so maybe she was thinking that her nose was gone, or something? I don't know, obviously. But each time she woke up, she said, "My nose, Mom," and then would reach over to me, and feel MY nose. I just kept telling her that her nose was still there, it was just under the mask, and she immediately calmed down and went back to sleep, so I don't know if that was it, or not. All I know is that it calmed her down. Although she did wake up several times through the night, overall, I considered the experience a success. We left at 5:30 Tuesday morning, and headed back to Illinois.

The funeral was as nice as a funeral can be, given the circumstances. My Dad conducted the service; I imagine that was one of the harder funerals he has presided over, given that it was his sister. Funerals are not one of my favorite things to attend, but my Dad does a wonderful job of using those times to remind us of the things that REALLY matter.
My Aunt Caryl was ready to go; there is peace and comfort in knowing that.

After the service, I enjoyed having the chance to visit with many other aunts, uncles, and cousins at the funeral dinner. I especially enjoyed watching Emeline interact with some of my relatives. It is always interesting to me, to watch other people watch her. I love to watch their expression transition from curiosity and uncertainty to joy, and for anyone who gives her half a chance, that is what this girl does to people. What a gift she is!

Here are the pics from her second sleep study, where she had to wear the mask.

 

 

 

 

Sleep Study

 

On Monday, November 8th, Emeline had a sleep study to confirm what we were pretty sure we already knew---that she has obstructive sleep apnea. Emmie has always been a restless sleeper, and she was quite the snorer until she got her tonsiles and adenoids removed at around 18 months. The noisiness improved, but the restlessness did not. It is not unusual for Em to sit up in her sleep, gasp, and then flop down, in a "seated-Indian-style-but-with-my-head-face-down-on-the-bed-in-front-of-me" position. Many times during her (more frequent than we have liked) hospitalizations, nurses would come in and say, "Oh my goodness! How can she sleep like that?" I always answered, "I don't know, but she does, ALL THE TIME.
In addition to her very active movements while sleeping, it has always been noticeable when she was in-patient, that her oxygen saturation levels
are consistently a problem when she's sleeping. (I'm pretty sure some of the nurses are convinced that I rig the O2 saturation monitor to beep on a regular basis, because it ALWAYS goes off, and they say, "I have no idea why this thing keeps going off," to which I reply, "I think it's because she has sleep apnea." Finally, at Em's yearly evaluation at the Down Syndrome Clinic a few weeks ago, I mentioned that I really thought she had sleep apnea, and I would like a sleep study to either confirm or rule it out. The doctor I was visiting with was shocked she hadn't had one by now, but I told her I think since she had already had her tonsils and adenoids removed, the ENT had assumed that apnea would not be a problem for Emeline. Well, clearly, that was not the case.


So she had the sleep study last Monday. The clinician from the sleep study center called me this afternoon and told me the results. Emeline's Base O2 levels were at 92%, with a low of 85%. She said this falls into the category of "Singificant Obstructive Sleep Apnea," and that Emeline needed to come in for another sleep study, and to be fitted for a C-Pap machine. Lovely. If I were a betting woman, I would place money that the last clinician would PAY good money to NOT have to deal with Emeline again. Don't get me wrong, the lady was WONDERFUL. Really. She was probably one of the MOST patient professionals we have ever dealt with, and believe me, that is really saying something! She spent at least an hour and a half hooking all the leads up all over Emeline's body, and even when Emeline screamed, kicked, and raised the fit to end all fits, ripping leads off, the clinician was calm and soothing and totally composed. (Even when the Mommy was about to lose it and burst into tears!)

She did eventually get everything hooked up, and I laid down with Emmie in the queen sized bed, and she went right to sleep. I was secretly relieved when she began her regular tossing and turning, because I was half-way afraid that she would go there and sleep great, and they would tell me she was fine, when I knew good and well she was having episodes of apnea. My greatest fear was they would tell me everything was fine, when I knew that it really wasn't.

Anyway, back to the sleep study...Around 5:15 on Tuesday morning, the clinician came in and woke us up, and told us we could head home. Emeline was almost as angry at the removing of the leads, as she was at the placing of them, but she survived, and we headed home. The glue they used for the leads on the top of her head (in her hair) was icky-sticky, and the clinician told me to use peanut butter in her hair, and it would come right out. Well, it did work pretty well, but Emeline was NOT happy when I had to wash her hair 3 times just to get the peanut butter and residual oiliness stripped out. Fun times, let me tell you! LOL

So where do we go from here? We have another sleep study scheduled, where they will fit Emeline for a C-Pap machine. Oh boy. I have no idea if/when/or how this will go, but if she needs to use it, we will work at making it happen! I'm hoping it will help some, that Emeline's Daddy uses a C-Pap machine, so it is something she is used to, (something that she likes to play with, actually!) so maybe that will make her a little more willing to give it a try?! I hope so! (But I'm not going to hold my breath. Because you and I both know, this girl has a penchant for NEVER doing things the easy way!)