Thank you for all of your prayers for our family lately! It's been a long five months and I figured it was time to post an update about how Ruby is doing with sleep. Here's the scoop:
About mid-November of last year, Ruby stopped sleeping well. Now, she's never been a great sleeper, many kids with brain damage suffer from interrupted sleep patterns, but with medication we were able to manage her sleep. But for some reason, in November she started waking up screaming mad, sometimes she would be inconsolable for hours. We weren't sure what was triggering the screaming. Was she is pain? Was she hungry? Did she have a cramp or an itch? Was she getting sick? We asked ourselves all of these questions, but it's tough to get an answer when you have a non-verbal kid.
So, we started adjusting things as much as we knew how at home. We increased her meds a little, added more melatonin, used oils, adjusted the temperature in her room, played different music at night, adjusted her position more often, made sure her feet were warm...all to no avail. Then, we started talking to doctors about this problem. I pushed to get tests done to make sure there was nothing else going on that we didn't know about it. Tests often take weeks or months to schedule and get results. We first did an overnight EEG to check for seizures at night, but the test showed nothing new there. Then, we did an EGD where they sedate her slightly to put a scope down to look for stomach/esophagus issues. Nothing to cause screaming at night was found there either. Next, we started working with sleep medicine doctors who did a sleep study on Ruby. They found that she snored--seriously, that was listed in the results. So, no great answers there either.
At this point we were frustrated and exhausted. We were hoping to find something we could fix, a reason for these screams. Unfortunately, it looks like the reason could just be that she has severe brain damage and CP and a seizure disorder. All of these can cause sleeping problems. This conclusion didn't give me a lot of hope for solving her sleep issues.
Thankfully, after the doctor saw she didn't have sleep apnea, he was willing to put her on some strong sleeping meds. This still was a process though as we figured out the correct mix. It included a couple of nights where Ruby screamed/cried for 7 or 8 hours. One time she wouldn't stop so I drove her to the ER just to get sedatives. It was rough!
Now, after several weeks of messing with meds, we seem to be in a better spot. This past week she slept better than she has for the 4 months before that, so we are encouraged. Her sleep isn't perfect yet, but now we are only getting up to reposition her and settle her back down a couple of times a night, which is livable. Her hips are dislocated because of her cerebral palsy and I do think they cause her discomfort at night. Our next hurdle is to find some solutions for her hip pain which will hopefully help her sleep better as well.
These last few months have reminded us again how thankful we are for the community of believers who surround us. In the middle of exhaustion you all have stepped in and prayed, helped with meals, had our house cleaned, wrote us notes, even spent the night a couple of times with Ruby so Mark and I could sleep. It is humbling to be on the receiving end of so much grace and love, but we are incredibly thankful and don't know how we could walk this path without all of you!
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