Hello there, shunt number 5....

So all my worrying wasn't unfounded.  There was a problem.  On my birthday I woke up to a my beautiful baby girl and I was actually scared to feel her soft spot to see if it was still full of fluid.  It wasn't!  It was nice and soft and nearly back to normal.  Phew, I thought, it's working okay.  Must have been to do with teething.

I had a brilliant day.  I got spoilt rotten and just relaxed.  We even went to the cinema, while Caitlin's Granny and Auntie came up to look after her.  We enjoyed the film, then rushed home to be back in time to put her to bed.  When we arrived, Caitlin was fine but wouldn't take her bottle.  Not unusual, she eats so much sometimes that she's just too full to take her bottle!  But I had a niggling feeling that the day had just gone a bit too perfectly to stay that way.  After we put her to bed I asked my mum had she give her her medication.  She had but turned out she'd given her twice the dose she was meant to get!  I went straight onto the internet looking at symptoms of overdose of this medicine and they were exactly the same symptoms of shunt failure.  Vomiting...irritability..being drowsy.  Great I thought, if she shows any of these symptoms, I'm not going to know if it's because of the medication or her shunt.  

Sure enough, we had just fell asleep when at 11pm I woke up to Caitlin screaming out as if she was in pain.  I ran into her room and she was pulling at her ears like crazy, and was just inconsolable.  I picked her up, tried to sooth her, tried to give her a bottle, tried to give her Capol but she just wouldn't stop screaming.  I felt her fonatelle (soft spot) and it was bulging and tense.  It was hospital time.  

By 11.45pm we were at the Royal hospital for Sick Children.   She actually fell asleep on the way down so I thought maybe it could be a false alarm.  She seemed happier when we were in the waiting room, saying hello to the other babies and smiling.  But that fonatelle was still bulging.  When we were called in to the be assessed the nurse asked what age she was.  I glanced at the clock and it was two minutes past midnight.  My birthday was over and Caitlin had just turned 15months old.
The nurse was concerned about the bulging fonatelle.  The doctors weren't happy with it either.  Time for a CT scan and a Xray.  Caitlin by this stage was very upset.  Not surprising seeing as she would usually be fast asleep in the early hours of the morning.  But amazingly at the very moment she had to sit still so the CT machine could take pictures, she went quiet and sat very still so it worked and the pictures could be taken.  That's my girl.  

After the scans we went back to our room to wait.  Caitlin was exhausted and cried herself to sleep while I sat in the dark room just thinking.  Thinking about how Caitlin would have to battle through another brain surgery.  Thinking about how I would cope with watching my baby girl go through this for the 5th time.  It just left me feeling very depressed and deflated.    It was just so unfair that she has to go through this.  Is she ever going to have longer than a few months before needing another surgery?  Her longest shunt has lasted 7months.  The latest one only lasted just under 3months.  As a mum, I just want to protect her, keep her safe.  But I have no control over her shunt.  We hadn't got the verdict yet but I just knew she was going to have more surgery.  

Unfortunately, I was right.  The doctor came in and said the neuro had looked at her scans and wanted to do surgery to explore what was going on with this shunt.  That was that.  I looked at my sweet daughter, so young, so innocent, peacefully sleeping and  I just felt so sad and so angry.  I can't accept that she won't get a shunt that works for her.  

But even in my despair, I found comfort.  While all of my family and friends closeby slept I kept getting messages on my phone.  Messages of support and prayers from all over the world.  From my friend's with sb and mum's who's children have sb.  I am so glad and thankful I have them.  They know how I'm feeling, and i know I'm not alone.  You know who you are, and I mean it when I say thank you :-) 

At 6.30am we finally got moved up to a ward.  Caitlin had her bloods done by this stage and I managed not to burst into tears for a change.  I kept repeating to myself in my head, I have to be strong for her.  Luckily, the doctor managed to get blood from her arm and didn't have to take it from her head.  I told him I'm asking for him personally if we're back to do it lol.  I don't know if I mentioned this before but Caitlin sleeps nowhere only her bed, so I was really surprised when she just closed her eyes and fell asleep while we were having a cuddle.  She was just that tired.  We all were, but we couldn't sleep.  Caitlin started to get really hungry around 7am but she was fasting so we just had to play with her, sing to her, cuddle her, whatever we could to try to distract her from being so hungry.  We knew how she felt, we didn't eat or drink either because we thought it would be too cruel to do it infront of her.  She amuzed herself as well by sticking her legs of the cot.  I had to take a few pics of it,

Let me out of here!!

Fed up, tired and hungry...

 But still managing a smile for her Mummy...

 The nurses talked about putting her on a drip because she was so dehydrated but the surgeons told us they'd be taking her to theatre soon and there was no need.  At 11am it was time to go.  I always hold her as we walk down to theatre.  She always wants her Mummy to hold her when she's sad and I always want to hold her when I'm sad.  She said her goodbye's to her Daddy and I bought her into theatre and held her close as they put the mask over her face to put her to sleep.  Again, I could feel myself welling up as she cried and squrimed and held onto me.  The staff kept telling me to talk to her, but my voice kept cracking when I tried.  I couldn't help the tears fall down my cheeks as she looked at me, her eyes pleading with me to take her away.  She looked so frightened.  If only there was something I could do, I would have done it in a heartbeat.  It was probably only about 30seconds before she was asleep but it felt much longer.  I put her on the operating table and give her a kiss then one of the staff walked me back down the corridor trying to comfort me, bless her.  David went home to pack for our stay at the hospital while I sat in in the ward beside the empty space were her cot should be, waiting for her to come back to me.  I wondered if I was strong enough for this.  I don't know if I'm strong enough to watch the person I love the most in the world go through all this surgery and suffering every few months.  There is no guarantee that she will come through the surgery, that there won't be complications.  But there is no other alternative.  I have to be strong.  I just have to hope that this shunt will work like I do with all the other shunt's.  The only difference this time is that the neurosurgeon put the shunt in a different place and revised the entire shunt, rather than just doing the usual revising the top end of the shunt.  

After 2hours David arrived back, and a minute later we were told to go to recovery.  And there was my little angel, fast asleep with a long scar round the back of her head.

Just out of theater...

The surgeon had done a good job.  He hasn't cut alot of hair off and the scar looked neat.  The tubing that has gone down into her tubing has bruised her skin though.

 He told us surgery went well and we were right to come in as the shunt was completely blocked with blood clots in it.  That's a scary thought.  He said it might work, it might not.  It's hard to allow all that to be done to her knowing that it might not work.  But it's what's needed at the time.  

The rest of the day Caitlin drifted in and out of sleep, we stayed by her side waiting for our smiling girl to come back to us.  The next day she was more alert and we even got a few smiles.

She was still very sore although I knew she was getting back to her normal self when she started shaking her head at any nurse who attempted to go near her and pushing them away when they tried to put a thermometer under her arm lol.  She's a fiesty wee thing!  By the afternoon, the day after surgery she was getting back to her usual self.  Talking, smiling, and singing.  I was so glad and happy to have her back.

In her toy car that is on the ward, she loves it!

Playing and looking very grown up!

This morning we got the amazing news that we could go home!  The neurosurgeon said she was doing fine and we were free to go, although she does need a MRI scan done in a couple of months and to go back in on Wednesday to have a stitch removed.  When I told her it was hometime she clapped her hands and waved bye bye to everybody as we left.  Hospital stays are hard, the noise means nobody gets much sleep, and the lack of stuff to do makes everybody grumpy and restless.  I take my hat off to anybody who does it for long periods of times, I need a holiday after a 3day stay there!

Now we are home and Caitlin has had the longest day time nap I think she's ever had.  She must have been enjoying the peace and quiet. 

I would also like to take this opportunity to ask anybody who is reading to say a prayer for a little girl on the ward who is very ill.  You wouldn't know it to look at her though.  I took Caitlin over to meet her and Caitlin was saying Hiya to her and the little girl was gurgling back to her.  She is so beautiful, and sweet.  She has a rare disorder which is causing her to have seizures and there is no cure.  The seizures are damaging her brain and she was bought to the ward to make her more comfortable before she passed away.  Then her parents had a visit last night from a specialist who deals with patients with this disorder who told them their little girl could live to between 8 -13 years of age.  They have been given some hope, no matter how small the chance is. Her parent's are lovely, decent people who clearly love their daughter.  The little girl's name is Brooke and she is 19weeks old.

We have got to come home but some families journeys continue in the hospital were they don't know what the future holds.  I don't know what is next for us - and I don't know what way we will cope if Caitlin's shunt fails again in another couple of months.  What I do know is that we will cope somehow because we're a family.
Caitlin has been so brave and has battled through these surgeries so well.  She is so special and I love her to bits.  I took these pics when we got home today.

My girl has the Xfactor.  She has that special something.

 I'm her No1 fan :-).