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The worse form of torture!



Yes this is another post about sleep! 

I am seriously one sleep deprived mummy! All I wanted for Christmas was a decent sleep again but Santa failed to deliver so I'm not too impressed with him! In all seriousness this lack of sleep is becoming a joke, I don't understand why he is getting worse despite being medicated. 

When he was in hospital having his pressure reduced in his brain in March he began to sleep through every night, no longer screaming for hours on end, yes he still needed melatonin to get him off to sleep but he was now staying asleep and I started to believe that maybe we had solved his sleep issues...how wrong was I...for almost 3mths I got decent sleep, felt like a new woman, became happier and my older boys noticed. But then it was snatched away from me when gradually Roo began sleeping less and less. 

I begged for help from the disability nurse, admitted that I was struggling, that it was unfair on my boys to have a mum who snapped and didn't want to play with them because I was so exhausted.melatonin was increased, changed to two different types but still it didn't make much difference..it was only when the lack of sleep started to affect Roo during the day by some days where he just did nothing as was exhausted , or he was falling asleep during the day unable to carry on, nursery commenting on how tired he was before they agreed he needed another medication. 

Chloral Hydrate entered our lives, it works it's magic, makes him sleep most of the night till 5am which is amazing. But I am only allowed to give him it after THREE nights of little sleep so he only gets this every forth night. I feel frustrated with this as I know of many other mums who kids get this medicine every night or every second night but yet I cannot...I have been told that it's quite a powerful drug and they are very cautious which I can understand but I just wish I could give him it more than once a week as it would help me to function more on extra sleep and also it would benefit Roo as the more sleep he gets the better it is for him as the days after he has this medication he can be still tired which we were warned about but he has this spark in his eyes and way much more energy to do things and is playing like a child should instead of laying on the sofa exhausted. I asked if I could give it more often but I'm only the parent and they know better so I just have to find a way to cope with the sleepless nights and accept that one night a week is all I'm gonna get to get a decent sleep. I know I shouldn't moan, that I should be grateful...don't get me wrong I am so grateful for that one night of sleep a week even if it means doing something no parent wants to do..drug their child with a powerful drug.

We were awarded respite a few weeks ago and are currently in the process of getting to know Roo's new carer and then plans will be put in place to decide what day a week she will have him... I fought against the professionals for a long time as I hated the idea of respite as I thought it was admitting that I couldn't cope but it's nothing like that at all...they are there to help parents who are carers to have a wee break for a few hours so they can recharge their batteries and I can honestly say I'm looking forward to getting a wee break as after new year Roo hours are changing and he is only going mornings for two and half hrs instead of full days so I won't get any time to myself to catch up on sleep etc so this respite might be a good thing as there is talk of the carer picking Roo up from nursery and looking after him for several hrs so that I can have a whole day to catch up on sleep...but it's a long process so meanwhile I just plod along and find the energy to get up every day. 

Being up during the night when the rest of the world sleeps is a strange thing, I often lay next to Roo's bed and sometimes I look out the window at the dark sky and see the stars , the moon and I think such random thoughts from worrying about Roo to thinking of meals to plan to imagining I'm on holiday in some remote place to hinting what would I do if the world developed zombies etc etc etc...it's amazing the random thoughts that go through your mind!!!

It's times like this that I wish I knew what Roo was feeling or thinking when he is up through the night, is it pain that wakes him, is it dreams, is it because he snores, is it because he fidgets so much and wakes himself with his constant moving in sleep? There been talk of referring him for a sleep study but I don't think it will find anything tbh, it will be the same as every test he has had - normal or abnormal but no explaination to why.... 






Comments

  1. I feel your pain! I'm also Mum to a non-sleeper, who is now 19 yrs old! Respite is a lifesaver, but like you I fought against it for years! I gave in to overnight respite when my daughter was 16, and I don't think I could survive without it now! She cannot take sleep meds due to her neurological condition, although has had melatonin in the past with not much success. They won't let her use melatonin any more without a sleep study, to rule out the possibility of apnoea. Can't imagine for one moment she is going to tolerate wearing a sleep monitor lol, so may be stuffed there!! xx

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