It wasn't a bad cold. She didn't have a fever. She'd have a few coughing fits a day, but they weren't bad and her nose was runny but not particularly stuffy. She could suck on her thumb and still breath.
The first night the alarm went off, telling me that he oxygen level was below 89%. I looked down and saw the red light on the right hand side over the falling number and picked her up. She woke up and started to nurse and the alarm went off. As she drifted off to sleep I put her back in her bed. Within minutes the alarm went off again.
It happened a few times before I took the sensor off and got out a new one. As soon as she fell asleep it happened again. She had little coughing fits almost immediately after the alarm would sound. When she'd finally drift off I could see that she was breathing a little fast, 31 respirations per minute, but not as fast as it sometimes is.
After a long night I figured that it was probably a fluke. She has bad nights now and then, but they're less and less frequent. If she has one bad night it's likely she'll go a week, or even two now, before she has another. And it wasn't like she was having apneas. She hadn't stopped breathing once.
The next night came and exactly the same thing happened. This time I looked at her closely. The oxygen monitor said her oxygen was in the 70s, but she wasn't purple or blue, which her pulmonologist had said she should be if her levels were really that low. Again it went back up when she nursed and then began to go off over and over again when she'd go to sleep.
And then the night after that we repeated it for a third time. I knew then that I needed to call the doctor.
We had an unusually busy day lined up. Dropping off Sadie and Patch. Speech and OT and then rushing Maggie over to her therapy place. A couple errands and then picking up Patch and hurrying to a doctor's appointment. As soon as that was over we were supposed to pick up Maggie and drive her back to next year's potential school for the second half of a speech evaluation. That left us just enough time to get back to pick Sadie up when her school got out.
That meant that if her doctor wanted to see her it would likely be in the afternoon, and I would have all five kids. Paul had court, so I was on my own.
And which doctor should I call? I knew there was a good chance that the pediatrician would say "sorry call her pulmonologist." I didn't have time to drive two hours each way to the pulmonologist's office. Beside's wasn't this a cold? Hardly worthy a trip to a specialist.
I silently hoped that her pediatrician's nurses line wouldn't tell me to call the pulmonologist and I left a message explaining what was going on.
And they called back and said to bring her in at 3:45 for a 4 o'clock appointment.
Thankfully Paul got out of court early and was able to arrive at 3:44. We hurried inside.
The pediatrician examined her and made sure that she didn't have pneumonia. Her lungs sounded great.
And then he explained that while the sleep studies say that she only has central apnea, he suspects that there's more to it than that. He thought that for whatever reason she didn't have the energy to breath because of the cold, so that even though she was just a little sick it was causing her to repeatedly stop breathing or breath too shallowly.
I asked if that would explain why she has more apneas when she's in the car, and he said that the position in the car seat makes breathing more difficult and that it was basically the same idea, that for whatever reason (he suggested mitochondrial disease again) when it's more difficult to breath she just doesn't.
I have noticed that on days when she's especially tired (like if she skips a nap) we're much, much more likely to have apneas all night long. If she's well rested she usually sleeps soundly all night without a problem.
She's almost completely better and the last two nights she's slept peacefully without a problem. But I'll admit I'm far more nervous about her getting sick now, if this tiny cold affected her so dramatically.
But at the moment she's back to bouncing off the walls. Tonight she put her face in the water in her bath (on purpose) three times, and then laughed about how daring she was being. And she's growing so fast! Here's a glimpse of our big girl going on the swings today for the first time:
Cammie, I'm so sorry- I know how terrible that is! I hope she stays healthy! Both of my "sick" kids have been hospitalized with colds for that same reason your ped mentioned- they run out of energy to do basics.ReplyDelete
When the doctor was talking about it it was like "oh that makes sense." Then when I got home it hit me how not very sick she was (which I mean, I told them when I called, so I knew it the entire time) and how if little sicknesses hit her this hard a big sickness would be so bad. And I thought of you and your boys and when you mentioned going to the hospital for being sick and I think understood a little more how things that seem little could be so much more dangerous. I know they did a ton of tests in the hospital, and I thought that they were leaning away from mitochondrial disease after the tests, but when this doctor mentioned the tests that would need to be done they didn't sound familiar, so now I need to wait for the next neuro or geneticist appointment to ask. The focus has been so much on making sure it's not CCHS that I think other things have been put on hold and that might be why it hadn't come up.Delete
We actually just left the metabolic specialist and submitted 4 labs for a whole exome sequencing test. We are hoping for some answers as to how to help the boys. CCHS (the PHOX2B) came back negative as did the mtDNA test so this is our last hope so to speak to find something. Hopefully Tessie continues to get stronger and does not have any set backs. But yeah we've had ICU stays for the common cold grrrrrDelete
That's interesting. When my daughter has a cold, she doesn't have many apnea episodes, if any at all, but we don't have an SpO2 monitor to know if she is desaturating. We had one last summer for about a month and it was confusing : she would have many desat alarms, but not at the same time as the apnea episodes !ReplyDelete
Does your monitor do only Sp02, or does it also have breathing and heart rates ? Do you know if she has apnea episodes shorter than 20s ? Our monitor will record episodes over 6s but the alarm will only go off after 20s which is now very rare (she is 17 months old). However, when I check she recording in the morning, he usually has several "shorter than 20s" episodes.
Ours has the breathing and heart rate too, but it doesn't tell me that she isn't breathing unless it's over 20 seconds. And I know a lot of the time it's said 6-10 breaths per minute (although lately she's averaging about twenty). Lately I've noticed that when the Sp02 is low her respirations per minute go up (last night I was watching and they were over 40 the entire time she was in the 80s and her heart rate was over 140 too, which is higher than it usually is when she's hooked up. So I definitely have more questions to ask at her next appointment.Delete
Another thing you mention is interesting is that your daughter put her face in the water. I've read that kids with CCHS should not go swimming without close supervision, because they don't sense lack of oxygen and can stay under water much longer than normal people. I've noticed that when my baby cries and gets mad, she seems to go a long time before she catches her breath. It can be scary sometimes.ReplyDelete
I've read that too and it made me so sad! Along with all the scarier things it's probably not that big of a deal, but it totally popped into my head when she kept putting her face under water... like "you know you have to breath, right?"Delete