24 little hours

Feel like deleting my last post reading it back it seems so negative! But no point in censoring a blog really is there- it's supposed to be a true reflection of life after all! Great day today, Elin really well- helps when we don't have to leave the house I think she is a home-bird! And no need for any car/buggy related stress. Just me and her most of the day as Paul at his Dad's. Lots of fun and snuggles. Elin not in any pain or uncomfortable- If only all days were like this!!! Feeling very blessed today. Gorgeous day, gorgeous girl. ;-)

Today I am mostly thinking...

...That it never gets easier really, you just get more used to it never getting easier. We watched Eastenders last night and desperately tried not to get upset when the baby was born not breathing, but both failed miserably!!. It was the Mum's cries that got me and took me back to a place I never want to think of again. Stupid really, it's only a soap, they're only fictitious characters. I wish I could erase Elin's birth from my memory though, the horror of it- like in 'Eternal sunshine of the spotless mind' I wish I could choose to have that whole memory wiped because sometimes the pain of it is too much to bear. Happy ending for the Eastenders characters of course, no soap would ever dare run a storyline depicting what happened to Elin. People simply don't want to know about it. How many stillbirths/poorly babies/children are there in soaps? Exactly. Bad things happening to children /babies just doesn't make good viewing does it. Emmerdale was brave once in running the 'cot death' storyline and it was brilliantly done. But they ruined it by magically solving the mum's problem when she discovered the baby had been swopped at birth and her baby was still alive and living in the same village (ha!). Pisses me off. Its about time they started thinking outside the box and reflecting a wider society. Imagine how much better people would understand disabilities like Elin's if it was shown in a soap like Eastenders which can get 16 million viewers!! But I digress. I suppose this tirade is really owing to the fact that I heard more news today about another birth in my family group, lovely news once again but very hard to swallow. How come everyone else in the world can give birth to a healthy baby, enjoying the feeling, the excitement, the wonder, the pride???? I can only imagine what it's like to hold your newborn in your arms, feel the relief that things are ok and see the limitless future stretch before you. Why did this have to happen to us??? Nope. It doesn't matter how much of a 'good' day I'm having. It never gets any easier.

Better and worse....

Just a quick update for all you lovely people who follow the story of my beautiful girl :-)

After another hospital visit last sunday due to her erratic breathing and high temp, she has had a fantastic week breathing wise! I think her nose is FINALLY healing after the operation and the antibiotics the hospital prescribed cleared up the little infection that must've been lingering somewhere and making her feel rotten :-( For the first time in months she is breathing clearly! Cant tell you how happy this has made us. She is also sleeping more normally and back to only waking twice a night (yay!)

However her seizures are not so good, in fact she is having loads of little ones but touch wood no big ones to speak of . The little ones are hard to watch though, her chin wobbles unnaturally or she'll fling out her arm for no reason or her head will shake. I can cope with them when its a few times a day but lately its been every couple of minutes or so :-( Tonight we found a possible cause- a new molar poking through her gum on the left side- new teeth always upset her and this one is a monster. Because she can't eat anything or lift her hand to her mouth, her teeth cut really slowly- god it must hurt her. Anyway Im hoping once the tooth of doom has broken through that her seizures will calm down, then we will be back on an even keel- it feels like we sort one thing out and another problem arises- I feel like shouting 'Give her a break!!' but I wouldn't know who I was shouting at. Tonight I read of a girl like Elin who is 10 years old. She can say 7 words. This sounds like a miracle to me. I would settle for one word. It would be 'Mum'.

Recovery

Well the two weeks since Elin's operation have been pretty hard! Her breathing did not improve and so for the last two weeks we have been watching her really struggle to get any air in through her little nose :-( She has not seemed to have worked out that she can breathe through her mouth, so a blocked nose is pretty bad news for her. Nights have been the worst, with her being up for hours at a time (usually starting around 2am) because she is simply snorting instead of breathing and cannot get any rest. Suffice to say we have been exhausted. She would then go to sleep early morning and sometimes sleep through until nearly noon. The first morning I was back in work after her op the childminder text to say Elin was still asleep and it was so unusual I was convinced she had somehow slipped into some sort of delayed post-operative coma!! Luckily Heather was on hand with some saucepans and spoons to rouse her! Stressful. Anyway the day before yesterday, after 11 days of listening to her snuffle and snort and being up with Elin practically all night, I took her to the hospital to get her checked out. convinced something dreadful must have happened for her still to be in such a mess all this time after her operation. They were really thorough on children's ward and even got an ENT doctor to come and listen to her. He agreed she was noisy, but said it was to be expected really after such an op, cos of the nasal swelling etc. He advised to keep her nose moist and carry on with the nurofen to reduce swelling. *touch wood* today is the first day we have seen improvement. Please god let this be the end of the breathing issue- she has so much to deal with already :-(

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.

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.

ENT

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 :-)