You never know what's round the corner.

It's hard to believe that just two days after Caitlin's first birthday party she was in theatre because her shunt had blocked again.  It all happened so quickly.  In the early hours of Monday morning, I woke up to her screaming and that's not like Caitlin, she never wakes up really upset.  Like most sb mummies, the first thing I did was check her fonatelle which is the soft spot in a babies head, and it should be soft and sunken but her's was risen and hard.  That is always an indicator for Caitlin that her shunt is blocked, but this had happened a few months previously and she had been okay, it had went away after a few weeks so we weren't sure what to do.  I give her a bottle and she settled straight away and fell back to so sleep easily so I reluctantly went back to bed, and decided I'd see how she was in the morning.
When she woke up she was fine, back to her usual happy self but her fonatelle was still risen and felt less hard but not soft.  It's a tough call to decide what to do, i'm always told to bring her down to hospital to be on the safe side, which is the best thing to do but I'm always a bit reluctant when she is so well because I know that when I take her to the hospital they will put her through scans and blood tests sometimes unnecessarily and I hate seeing her so upset when they do that.
But I knew I would just worry all day if I didn't so I bought her down and they decided on a shunt series but not before they tried to take her blood.  Now taking blood from Caitlin is no easy task.  Usually it takes at least 3 medical staff and several attempts before they can get anything from her.  They always try her arms and legs first and I always tell them it won't work but they try anyway and they are always unsuccessful.  This time was no different.  After sticking needles into her arms and legs Caitlin was inconsolable and as they held her down and put a needle in her head to try to get some blood, I tried to keep it together but she was screaming for me and putting her arms out for me to help her and I just burst into tears.  I know that doesn't help but I just couldn't watch it any longer and had to stand at the other side of the room.  It really traumatised Caitlin and after that any time a nurse came near her she would cling to me and cry.  Here is a pic of my brave girl, with her head all bandaged up, after them taking the blood from her head and putting a line in.

My poor baby was so exhausted after all of that but just as she was drifting off to sleep they sent us down for scans, she had x-rays taken and a ct scan and when we got back, the staff give us a room with a cot so that she could sleep but of course as soon as she drifted off the neurosurgeon turned up to assess her and told me he would need to wake her.  Doctors and nurses tend to have a habit of doing that.  I know they don't mean too but every time Caitlin finally fell asleep one would come in to either take blood pressure or her temperature or to assess her.  Before we went home two days later, Caitlin had been woken twice just as she drifted off, and on the third time she had fell asleep a neurosurgeon came in and I said to him she had just fallen asleep and he laughed and said well she won't be sleeping now.  I was ready for whacking him lol.

Anyway, I'm getting off the point of what happened next.  The neurosurgeon explained her ventricles had increased slightly from her last ct scan but that could be down to the fact she is bigger now, and so he felt the shunt tubing in her neck and frowned, explaining to us that he wasn't happy with the flow and that he would like to take her to theatre to investigate.  He then rang Caitlin's neurosurgeon who didn't want her to have more surgery and insisted that a shunt tap be done first.  He done this and to be honest I don't really know what it involved because I couldn't look, I just cuddled Caitlin while he did it and he said this confirmed that something was up because there was hardly any fluid coming out.  So that was that, Caitlin was now fasting, and surgery was scheduled for that evening.  Now, trying to entertain a tired, hungry and thirsty baby all day is not fun! Luckily, my mum was with us so we kept Caitlin happy by letting her watch cartoons and playing peek-a-boo behind the hospital curtains.  Caitlin's dad showed up after work and shortly after that the neurosurgeon came round to explain the risks with the surgery.  He said as with any brain surgery, there is a risk of internal bleeding, infection, seizures and worse.  We knew all this, this was our fourth shunt operation but hearing it over and over again doesn't make it any easier.

As we waited, another mum from the ward came over and told us her son was celebrating his 7th birthday and we were welcome to have some birthday cake.  She was a lovely woman and I remember thinking how crap it must be to celebrate your 7th birthday in hospital but the little boy seemed really happy and upbeat.  When we were walking down to theatre with the surgical team the mum and her son were walking along the corridor too and we got talking.  The mum explained to her son that these people (the surgical team) would be helping him tomorrow when he had his operation and to not be afraid as they were there to help.  The little boy looked a bit nervous of them but he was happy to talk to them and to us.  He was a very polite and friendly child and thanked me when I wished him a Happy Birthday.  His face lit up when the surgical team told him they had a Wii down in theatre and he could play it before his operation. He was delighted and told them he had really missed his Wii since he had come to hospital.  His mum wished us well as we went on into theatre and I give my daughter a big kiss and told her I'd see her soon before her Dad took her up to be put to sleep.  I have always been the one to bring her up to be put to sleep so I thought he could have a go this time! He told me after she was clapping her hands for the surgical staff and playing with their medical masks.  That's my girl for you, always wanting to show off!
As she was having her surgery, we waited and waited anxiously.  She was only gone for an hour and a half but it just feels like an eternity.  The relief I feel each time they tell me I can see her in recovery is just indescribable.  On our way up to see her we bumped into the neurosurgeon who explained the top end of her shunt was blocked and she needed her Mummy and Daddy as she was very grumpy.  Sure enough when we went in, even though she was sore and groggy, she stopped crying when I held her, but if any of the nurses dared to come near her she was cry again.
Here is a pic of the scar, were they opened her up to fix her shunt.

Everytime her hair starts to grow back her shunt blocks and she gets it shaved off again, But the surgeon did a good job with the stitches and only shaved off what he needed too.  It's a small price to pay to control the hydrocephalus but it's still hard to see.  That night was like any night in the hospital.  Alot of noise, and not alot of sleep.  I go crazy in those places but it's the best place for Caitlin to be, even though she hates being there too!

In the morning she was already nearly back to her old self.  She was very clingy but she was really happy when we took her to the playroom and she got her pick of loads of toys.  Her favourite was the car.

Back to her cheeky self....

When we went back to her room I smiled over to the little boy who had celebrated his 7th birthday the day before.  I'd seen the surgeon come in and talk to him a little while before so I knew he would be going to theatre soon.  His dad had cuddled him most of the night and his mum was giving him hugs from everybody who had sent them and he smiled at each one.  I watched as the surgical team arrived and his mum walked him out of the ward, hugging him tightly, and I wished them luck and she smiled gratefully.  I watched as his Dad looked at his wife and son with tears in his eyes, and I got a lump in my throat.  I watched as they walked down the corridor together and I said a prayer for that little boy who was in his way to theatre.  I cuddled Caitlin and hoped that the surgeons would be able to remove all of his brain tumour and that he would make a full recovery.  It was obvious that this family were good people and I wondered, why do these terrible things happen to good people?  These children don't deserve what they have to go through and I always think to myself, Caitlin has been through so much, after this operation she has to be okay for at least a few years, it's just not fair for this to keep happening.  But it does keep happening.  Some children with spina bifida have recurrant UTI's (urinary tract infections), some get lots of fractures, and my Caitlin seems to have a lot of shunt malfunctions.  I guess it's just the way it is.  I just wish it wasn't the way it was.

Having said that, Caitlin copes so brilliantly and bounces back in no time.  I had to take a picture when we first got back home, and as you can see she was glad to be home again!

Seeing that family have to go through watching their son battle an aggressive brain tumour puts things into perspective.  I just have to enjoy when Caitlin is well and if I have her home with me this Christmas, I can honestly say I will be the happiest girl in the world.  I have to appreciate every moment that I have with her.

 Because you just never know what's round the corner.