We got the results of KayTar's sleep study earlier this week, but we don't know what to do with them! We're having some issues being turfed between the pulmonologist/sleep doc and the neurologist. The main problem is that she had 31 central apneas (where the brain fails to signal the body to breathe) that lasted up to 30 seconds and were associated with desaturations to the mid/low 80s. Also, her oxygen saturation was only 95% when awake and 93-94% when asleep, which is lower than I'd like even if it is not hugely abnormal. Her lowest oxygen saturation was 83% with 23 desaturations of 3% or more. Other subtle abnormalities were her sleep efficiency, 71.1%, 111 arousals, and she spent a tiny amount of time with her EtCO2 above 50. Her AHI/CAI are 4.5 overall, but 5.7 in NREM.
I'm a little frustrated right now from the lack of a response I'm getting from her physicians, because I'm a bit concerned about the results of this study. 6 months ago, her study looked significantly better. She had only 15 central apneas that were only 8-16 seconds in duration and her oxygen levels never dropped below 91%. Her average oxygen saturation was 97%. Her AHI was 2.0. All of it was worse this time and it has only been 6 months since the last study. She is also "forgetting" to breathe still during the day and we have to remind her. It doesn't really make sense to me that someone can forget to breathe, but when she is concentrating on something, she does. I wonder if it is related to the central apneas.
Between the daytime symptoms she has, the "forgetting" to breathe, the lower average oxygen levels overall, the increased and prolonged central apneas, and the desaturations...I am really hoping that the pulmonologist will recommend treatment this time, at least on a trial basis. I also really want to be able to monitor her oxygen levels at home with a real pulse oximeter. I know other patients of our pulmonologist who have been treated with fewer significant issues than KayTar is exhibiting, so I hope that once we are really able to connect with her and review all of this (soon, I hope!), she will have good suggestions for what to do next!
Showing posts with label sleep study. Show all posts
Showing posts with label sleep study. Show all posts
Sunday, July 01, 2012
Sunday, June 24, 2012
Sleep Study #2
KayTar had another sleep study on Friday night. Overall, I think it went better than the last. We were at a different facility in a different hospital system and even though both are supposed to be geared towards children, this one did a MUCH better job with KayTar. At the last facility, they were not very friendly and they were very forceful and rushed in getting KayTar hooked up and into bed. This time, our tech was WONDERFUL. During the 12 hours we spent there, she gave KayTar a roll of pink Coban wrap with hearts on it, a pink light-up wand, a Little Miss Princess notebook, an Avengers pen/necklace, stickers, a popsicle for breakfast, and she hooked up her gorilla and made plans to get a name badge holder for KayTar for the next time she has a sleep study. She was great with KayTar, very friendly and patient, and let us stick to our usual bedtime routines even though it meant KayTar went to sleep later than usual. The facility itself was also much nicer, instead of a single hospital bed in the room, there was a very comfortable double bed. KayTar said, "Oh my gosh, they gave us a hotel room!"
Once the girls (KayTar and her gorilla) were hooked up and in bed, KayTar was allowed to read for a half hour, as usual, and I followed the tech into the hall to ask her to watch for/make note of any breath-holding KayTar did during reading time (without drawing K's attention to it, didn't want her overthinking it and changing her normal behavior). She thanked me for reminding her because the pulmonologist had mentioned it in her notes. In the morning, she told me she was able to catch some of those spells during reading and she noted it for the doctor. Hopefully, even if we still don't know why it happens, catching it in action will at least tell us if it is something we need to be concerned or not about since she was hooked up to EEG, EKG, and oxygen/CO2 monitors at the time.
As for the sleep itself, it was rough! If you've never had the pleasure of having a "sleep" study (it deserves the air quotes, believe me), it is not very restful. Poor KayTar was so hooked up (she had electrodes on her scalp, face, neck, chest, and legs; bands on her chest and stomach; a transcutaneous pCO2/O2 monitor; and a pulse ox probe on her finger) it made for a very fitful night. She was especially agitated by the nasal cannula and CO2 thermistor and tried to pull it about a thousand times (slight exaggeration). The tech came in to put it back in about 20 times (no exaggeration) and I had to tell her to leave it alone more than 50 times (no exaggeration). In the morning, I asked the tech if they were able to get adequate information with all of her waking and removal of the cannula and she said they did, so that is good. If they got good info, one mostly sleepless night will be well-worth it!
I could only glean limited information about how it went. I know that her transcutaneous CO2 was above 50 for all of the sleep time I observed (normal is below 45, but some docs don't treat until it is over 50 for a certain % of the night). I could tell she was about to wake up because it would go down to 44-45 right before she woke up and could tell when she was back to sleep because it was back to the 50s. During her last study, she was between 44-49 most of the night, but they were only measuring EtCO2 with the nasal cannula, so if she was blowing off CO2 from her mouth, it was not measured. The transcutaneous monitoring gives a more accurate picture, so I'm glad this lab uses it! The other data I have is her transcutaneous pO2 and it doesn't really mean much to me, because I can't find much information about the norms. Most of the night, her pO2 was between 40-70. The only information I could find about pO2 said it should be between 80-100, but that was where an ABG was concerned and not transcutaneous monitoring, so I don't know what to do with the information for sure. I couldn't see her oxygen saturations, so I don't know anything about those numbers yet. I won't know anything about central apneas until I hear from the pulmonologist, but I do know she stopped breathing once because she started kicking and I thought she was fussing and tried to calm her down and the tech told me she was still sleeping and to let her be. Later, she told me that she had stopped breathing and the kicking was an attempt to wake up/start breathing. Based on the limited information I have about her CO2 levels, I won't be totally surprised if we have to start some kind of night-time treatment for her after this (in which case, the little miss will have to adjust to having something in/around her nose at night). We'll see what Dr. J thinks of her study (hopefully soon!) and go from there.
As for the sleep itself, it was rough! If you've never had the pleasure of having a "sleep" study (it deserves the air quotes, believe me), it is not very restful. Poor KayTar was so hooked up (she had electrodes on her scalp, face, neck, chest, and legs; bands on her chest and stomach; a transcutaneous pCO2/O2 monitor; and a pulse ox probe on her finger) it made for a very fitful night. She was especially agitated by the nasal cannula and CO2 thermistor and tried to pull it about a thousand times (slight exaggeration). The tech came in to put it back in about 20 times (no exaggeration) and I had to tell her to leave it alone more than 50 times (no exaggeration). In the morning, I asked the tech if they were able to get adequate information with all of her waking and removal of the cannula and she said they did, so that is good. If they got good info, one mostly sleepless night will be well-worth it!
I could only glean limited information about how it went. I know that her transcutaneous CO2 was above 50 for all of the sleep time I observed (normal is below 45, but some docs don't treat until it is over 50 for a certain % of the night). I could tell she was about to wake up because it would go down to 44-45 right before she woke up and could tell when she was back to sleep because it was back to the 50s. During her last study, she was between 44-49 most of the night, but they were only measuring EtCO2 with the nasal cannula, so if she was blowing off CO2 from her mouth, it was not measured. The transcutaneous monitoring gives a more accurate picture, so I'm glad this lab uses it! The other data I have is her transcutaneous pO2 and it doesn't really mean much to me, because I can't find much information about the norms. Most of the night, her pO2 was between 40-70. The only information I could find about pO2 said it should be between 80-100, but that was where an ABG was concerned and not transcutaneous monitoring, so I don't know what to do with the information for sure. I couldn't see her oxygen saturations, so I don't know anything about those numbers yet. I won't know anything about central apneas until I hear from the pulmonologist, but I do know she stopped breathing once because she started kicking and I thought she was fussing and tried to calm her down and the tech told me she was still sleeping and to let her be. Later, she told me that she had stopped breathing and the kicking was an attempt to wake up/start breathing. Based on the limited information I have about her CO2 levels, I won't be totally surprised if we have to start some kind of night-time treatment for her after this (in which case, the little miss will have to adjust to having something in/around her nose at night). We'll see what Dr. J thinks of her study (hopefully soon!) and go from there.
Sunday, November 20, 2011
Sleep Study Results
We saw the pulmonologist on Tuesday to get KayTar's sleep study results.
She was asleep for 86.9% of the study. (norm is greater than 90%)
She had 189 arousals or 20.9 per hour. (norm is less than 14 per hour)
Her O2 saturation was usually 97% with desats to 91%.
Her EtCO2 was as high as 52 mmHg, but usually 45-49 mmHg (norm is below 45)
She had 15 central apneas lasting between 8-16 seconds.
She had 3 obstructive hyponeas.
She had a slightly slow occipital rhythm on EEG.
So, she had some abnormalities...but nothing too dramatic, and nothing to current pulmonologist wants to treat. It is a little frustrating...on one hand, we are glad she had no major abnormalities...but on the other hand, we are tired of living in the gray area! It is also frustrating because I've talked with a few parents whose kiddos see the pulmonologist who specializes in these metabolic/mito kids (the one we were supposed to see) and she treats at lower thresholds, because these kids tend to be more affected by these subtle changes, so kids with more normal results than KayTar are being treated. I'm especially concerned about her EtCo2 being mildly, but consistently elevated all night. That, plus the fact that she holds her breath so much of the day, makes me worry a bit about hypercapnia. Seems like there is a chance that headaches and fatigue could be stemming from that and I'd like to rule it out for sure before we ignore it as a possibility. The truth is that if nobody truly knows what is going on inside KayTar's body, they really don't know if these slight changes are causing problems for her. Alas, getting a doctor to return a phone call or email these days evidently requires an act of God...so I'm not going to hold my breath that anyone will actually follow-up on this. Pun intended. ;)
****
In other news, KayTar has had a couple of good weeks, school-wise. She hasn't really needed to make any extra trips to the nurse during the day (with the exception of an odd earache complaint), so that is good. But she is still having issues at home...headaches a couple of nights this week and more abdominal pain tonight. I've been playing phone tag with the GI office since Friday before last...10 days now. I've spoken with a couple of nurses in the meantime, the one I mentioned in the previous post, and a different one who seemed at least familiar with KayTar's case and was reading comments that I could tell actually came from her GI. She basically asked what I felt was appropriate and I said that I just want to make sure we aren't overlooking a physical problem before writing this off as her new baseline. We decided to order a KUB and get a referral to a motility specialist. The last thing she said was, "Let me call [clinic location] to get that KUB scheduled. I'll call you right back." That as WEDNESDAY. Sooo, we're getting nowhere quick. I'm really hoping someone gets back to me this week, though, so we might have a shot of figuring this out for her.
She was asleep for 86.9% of the study. (norm is greater than 90%)
She had 189 arousals or 20.9 per hour. (norm is less than 14 per hour)
Her O2 saturation was usually 97% with desats to 91%.
Her EtCO2 was as high as 52 mmHg, but usually 45-49 mmHg (norm is below 45)
She had 15 central apneas lasting between 8-16 seconds.
She had 3 obstructive hyponeas.
She had a slightly slow occipital rhythm on EEG.
So, she had some abnormalities...but nothing too dramatic, and nothing to current pulmonologist wants to treat. It is a little frustrating...on one hand, we are glad she had no major abnormalities...but on the other hand, we are tired of living in the gray area! It is also frustrating because I've talked with a few parents whose kiddos see the pulmonologist who specializes in these metabolic/mito kids (the one we were supposed to see) and she treats at lower thresholds, because these kids tend to be more affected by these subtle changes, so kids with more normal results than KayTar are being treated. I'm especially concerned about her EtCo2 being mildly, but consistently elevated all night. That, plus the fact that she holds her breath so much of the day, makes me worry a bit about hypercapnia. Seems like there is a chance that headaches and fatigue could be stemming from that and I'd like to rule it out for sure before we ignore it as a possibility. The truth is that if nobody truly knows what is going on inside KayTar's body, they really don't know if these slight changes are causing problems for her. Alas, getting a doctor to return a phone call or email these days evidently requires an act of God...so I'm not going to hold my breath that anyone will actually follow-up on this. Pun intended. ;)
****
In other news, KayTar has had a couple of good weeks, school-wise. She hasn't really needed to make any extra trips to the nurse during the day (with the exception of an odd earache complaint), so that is good. But she is still having issues at home...headaches a couple of nights this week and more abdominal pain tonight. I've been playing phone tag with the GI office since Friday before last...10 days now. I've spoken with a couple of nurses in the meantime, the one I mentioned in the previous post, and a different one who seemed at least familiar with KayTar's case and was reading comments that I could tell actually came from her GI. She basically asked what I felt was appropriate and I said that I just want to make sure we aren't overlooking a physical problem before writing this off as her new baseline. We decided to order a KUB and get a referral to a motility specialist. The last thing she said was, "Let me call [clinic location] to get that KUB scheduled. I'll call you right back." That as WEDNESDAY. Sooo, we're getting nowhere quick. I'm really hoping someone gets back to me this week, though, so we might have a shot of figuring this out for her.
Thursday, November 03, 2011
Sleep Study!
KayTar's sleep study was last night and it went better and worse than I expected. It went better in that she didn't have any major allergic reactions to the adhesives, so the no-Coban/limited adhesives plan worked. It was worse in that there wasn't much sleep happening during that sleep study. She slept enough for them to get the data they needed, but it was not a restful night and she moaned a lot and woke up confused a few times. She usually sleeps right through the night, even when we've been inpatient, but it is tough to get rest when you are hooked up like this! EEG, EKG, nasal cannulas, bands around the chest to measure expansions/contractions, sensors on her legs and chin, pulse oximeter...yowza!
That being said, I'm certain she got more sleep than I did. I was not feeling my best in the first place, but when you add in the freezing room, hard mattress and pillow, sleeping fully clothed with a hoodie on, and a kiddo who isn't sleeping...well, it was not a recipe for successful snoozing. We got through it, though, and it was definitely not the worst test we've ever been through!
The techs would not tell me anything, so we have to wait 3-4 days for the report from the doctor. I'll call on Monday to check on things, because I'm very curious about how it looked on their end. I know from watching the one monitor in the room that her ETCO2 stayed in the 45-49 range for the most part and I saw her RR drop below 10 a few times. Of course, I didn't watch the monitor all night...I did attempt to catch some Zzz's, though they proved to be quite elusive. KayTar and I spent the day here recuperating and I am SO looking forward to a good night's sleep in my own amazingly comfy bed tonight.
That being said, I'm certain she got more sleep than I did. I was not feeling my best in the first place, but when you add in the freezing room, hard mattress and pillow, sleeping fully clothed with a hoodie on, and a kiddo who isn't sleeping...well, it was not a recipe for successful snoozing. We got through it, though, and it was definitely not the worst test we've ever been through!
The techs would not tell me anything, so we have to wait 3-4 days for the report from the doctor. I'll call on Monday to check on things, because I'm very curious about how it looked on their end. I know from watching the one monitor in the room that her ETCO2 stayed in the 45-49 range for the most part and I saw her RR drop below 10 a few times. Of course, I didn't watch the monitor all night...I did attempt to catch some Zzz's, though they proved to be quite elusive. KayTar and I spent the day here recuperating and I am SO looking forward to a good night's sleep in my own amazingly comfy bed tonight.
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