Living with Cerebral Palsy 🍋🍋

Saturday, 23 January 2010

Operation Alder Hey...

This photo was taken 30 minutes after surgery!!! As usual I fell apart after taking her down for anaesthetic- it never gets any easier, especially as she was so happy this time then they put the mask over her face and she fought it with her hands and even her little feet were shaking OMG it was horrible. It seemed to take forever, then they removed the mask and said 'Give her a kiss Mum' and ushered me out- ARGHHH horrible!! Luckily all went well, they widened her left nasal passage and took out her adanoids. Hopefully this will help her breather more easily but up until now we have seen no imrovement- in fact she is struggling even more but the doc says it will take a couple of weeks for the swelling to reduce, so it may be better then. When I went to the recovery room she looked like she had done ten rounds with Mike Tyson- crying with blood all over her face- I suppose surgeons aren't concerned with cleaning them up afterwards! They kept us in overnight to be safe, so I slept on the old familiar NHS camp bed by her cot and she was really well through the night. We are home now and she is VERY blocked up and snuffly- god I really hope it's just the swelling. Watching her struggle to breathe is awful :-( I also went to her Neurology appointment while I was there, as her fits have been a little out of control lately. He has added another drug into the mix of epilepsy drugs and hopes this will work for her- so do I!!!! Suppose I will as always, just have to cross my fingers and wait.

Monday, 11 January 2010

Alder Hey....

Awful visit. Took 2 hours to get there, so Elin was in a right state by the time we did. Hyperventilating and lathered in sweat. She barely had time to recover before we saw the ENT specialist who was very lovely, but shocked at the state of her breathing (it was particularly bad, I have to say, on account of the panic-stricken long car journey ). Had to go through the birth story again (never fun) and then he had a quick look at her. He said it must be very 'worrying' for us that her breathing is so bad. We pointed out its funny what you get used to. I am only aware of it now in public places when I see other people staring. Anyway, he listened to her chest and thankfully- a little positivity- says that despite sounding awful, she is actually getting a lot of air into her lungs. He is going to make another appointment for us where he will put her under a general and take a good look, probably remove her adanoids if they are enlarged. He says he has seen kids like Elin before and sometimes there's nothing you can do to help. Sometimes the brain damage is so severe that the brain simply isn't sending clear enough signals to the passageways to enable her to breathe correctly. He fears she may also suffer from sleep apnea. This is when you stop breathing in your sleep for small periods, then it wakes you up. He thinks this is why she wakes up at least twice a night. Great. Not at all worrying, then. Im sure that little nugget of information will help my insomnia. In the car on the way home, despite us trying some sedation to avoid a repeat of the journey there, Elin does not go to sleep, gets extremely stressed and starts fitting. Try going down the busy carriageways between Liverpool and wrexham in bad weather and watch your baby strapped into her car seat having fits. Do you take her out and hold her despite the heavy traffic? Or stick to safety first and leave her in her seat??? I did a bit of both, feeling sick with guilt, worry and frustration. The minute we take her out of the car at home and I am preparing to medicate her, she relaxes, like a wet rag doll and sleeps on the sofa for two hours where she still is now. Sometimes I feel like I just can't take any more and today is one of those days.I hate this, I hate it. I hate it.

Sunday, 10 January 2010


Taking Elin to Alder Hey tomorrow for her ENT appointment. I really hope they can come up with some solution as she just can't seem to breathe through her nose. I am convinced this is what wakes her up 2-3 times a night, plus it bothers her and it sounds awful bless her. I really wish she didn't have all these extra little problems to worry about. I think she has enough to deal with!.Not such good news on the seizure front, she has had to have her medication upped as she is seizing every five minutes and has been for couple of weeks. They are only little ones and manifest themselves in small twitches of her head and arms, but still not good and distressing to watch. We back at Alder Hey later this month to see the Neurologist, I think he may change her medicine completely, which worries me as changing medicine has it's own implications- we'll see. Feels like I live in constant fear of what the future holds, it's a hard way to live your life! On the plus side Elin seems extremely alert right now, despite the seizures and is incredibly smily. Twice this weekend I have popped out and when I have returned she has broke into a massive smile when she hears my voice. I really hope it wasn't a coincidence! I dont think it was :-)
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