The thought of Ashley having a seizure in the middle of night really frightens me. I worry I won’t hear her – in fact, if the seizure is one of her typical ones, I know I wouldn’t hear her. And when she is sick, the probability of seizures increase, and the seizures themselves can be life-threatening.
Until recently, I have had a small loveseat in her bedroom, and when she was sick, I would sleep, or try to sleep, on that loveseat. The reality was I didn’t sleep but I was at least comforted in the knowledge that I would know if something happened to Ashley. But that loveseat wasn’t a good solution because I needed some sleep to be able to care for her during the day. So, I’m trying something different now.
I had a spare twin bed and mattress and this weekend I set it up in my bedroom. I by no means have a large bedroom. In fact, my house is pretty old, and was built in an era when house space was relegated to the living room and dining room not but bedrooms. So, I now have my queen bed, the twin bed, two large old dressers and a nightstand all jammed into my bedroom. Even though I have to walk sideways to move around the room, I feel so much better knowing that Ashley can sleep on the twin bed and I can have my bed in the event that she is sick.
How do you handle a similar situation? Have you made special arrangements for the times that your child is sick? Or for those of you who have children who are medically fragile, how do you monitor your child on a night to night basis?
I worry also when my son gets sick because he won't take oral meds and his fever has to be around 103 for him to tolerate meds in suppository form to break his fever. We have a video/audio baby monitor that we use to keep a close eye on him when he is sick.
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ReplyDeleteI can tell you exactly how we monitor this one, because we have a similar issue. Connor stops breathing when he has a seizure, and so it's really important for us to be able to monitor him at night.
ReplyDeleteWe have one of those Angelcare movement sensor monitors. It works just as well with a twin bed as it does a crib. If he stops moving (ie breathing) for more than 15 seconds the alarm sounds. We get the occasional false alarm, but not many, and it's alerted us to Connor having a seizure more than once-- including one time when I was in the bathtub and wouldn't have otherwise checked on him until it probably would have been too late.
It smacks a little bit of Big Brother, but on the up side Connor does get to sleep by himself and at least have privacy that way. And the literally life-saving benefits we receive far outweigh the down side, in my opinion.
Even if the alarm isn't going off, you'd probably be able to hear the difference in breathing pattern and/or movement that would indicate a seizure.
That's my two cents!
~Jess
We have ended up moving Max's bed into our room. Our room is quite large, so we have his bed on one side and ours on the other. He likes to know we're close by, and I like to be a few steps away when he has a seizure at night. I think we all sleep better this way.
ReplyDeleteEvan, my 1 year old, has only had one seizure...but it lasted 3 hours with medical intervention...
ReplyDeleteBut I did hear wimpering-type sounds, so we just use a monitor at all times...turned up, despite the cries. Sorry Ashley is so quiet.
My daughter had two febrile seizures...one during the night...and thankfully we happened to have the baby monitor on that night (she was about a year old).
It's hard to not live in fear, but we try.