I'm just having a moan really.
I am so tired.
I'm lying next to my beautiful and amazing 7yo, who has various health issues and is an absolute warrior. I can't sleep, not yet.
One of her (minor in the grand scheme of things) issues is that she has no bowel sensation. The hospital are trying to deal with this with ever increasing quantities of laxatives, because they haven't stopped to look at the bigger picture, and likely neurological reasons behind it. But hey ho, I have to stick with their plan until they realise they need a new better one. The alternative is possibly life long incontinence.
Increasingly she's going at night. Usually between 11pm-2am. She won't wake up and realise and I can't have her lying in it all night every night, so I stay up. Anywhere from 1-5 💩 pull ups with the increased laxatives.
I clean her, I vent the room, then I lie there doomscrolling until I hear or smell the next lot, or think she's done. I've been doing this for so long now I usually guess right. So I go to sleep some time around 2 or later, then she's awake at 6.
I also have a son with ADHD related sleep issues who doesn't go to sleep until 11ish anyway.
I could alternate nights with my husband but I've been through so much with her with hospitals etc that I'm her main safe space and she will often just scream for me if it's not me. Sure cognitively 'normal' but neurological stuff is complicated and can cause autistic style meltdowns.
I'm not after medical advice, the situation is complicated, with multiple hospital departments involved. I also know I can't die of tiredness or I'd be dead many times over. For the first 2 years even she didn't sleep. In the months of hospitals and worry. In the months of keeping one eye open to make sure she didn't tangle in wires when on night Ng feeds.
This is just the latest challenge, albeit a stepped up version from one that's been going on since toddlerhood. Never anywhere near this bad though.
I'll stay up to care for her for as long as she needs. I love here so much, and things could be so much worse. But this isn't great for her and I'm so, so tired.
I just needed to vent. Then get my 4 hours of sleep, juggle two children and try to work from home.