Here comes shunt number...

I think it's shunt number 7...it is not good when your 3 year old has had that many shunt revisions that your starting to lose count.  Yet here we are.  
Caitlin took it pretty well when I told her we were going back into hospital to get her shunt fixed.  She told me that it was okay, but she didn't want the sleepy medicine (anaesthetic) because it is disgusting.

We arrived at the hospital Sunday evening, and Caitlin settled in great, even was asleep for 9pm, which is unheard of when she is in hospital.  She was even happy to be in a huge big bed again.  And probably extra happy because she gets her dummy whenever she wants in the hospital, which is pretty much all the time!

 

I hopped in beside her and we were both having a relatively decent sleep until a doctor woke me and told me she had to get blood from Caitlin.  At 1am in the morning.  To say I wasn't happy was an understatement particuarly when I had reminded the nurses many times that Caitlin would be going to sleep soon and if bloods had to be taken, I wanted them done before she fell asleep.  So, poor Caitlin was woken by a doctor trying to poke her with a needle.  Needless to a lot of screaming ensued, and Caitlin probably woke the entire ward up.  No wonder children are terrified of hospitals when they do things like that!!

When it was done I give her a cuddle, hoping she would just go back to sleep but after that I think she was afraid to go back to sleep.  It was 4am before she finally nodded off again, only to be woken by nurses at 7am wanting to take blood pressure and to remind me she was fasting.  

Thankfully Caitlin went into surgery close to 11am so she wasn't fasting for as long as the week before.  The neurosurgeon spoke with us shortly before she went in and scared the crap out of me.  I thought it would be a straightforward shunt operation as usual.  Then he explained that this shunt surgery would be difficult.  That usually Caitlin has large fluid spaces, making it easy to fix, or to replace a shunt.  But this time the fluid space was tiny, so even if he got the shunt out, he wasn't sure he would get another back in.  In which case he would have to put the shunt on the other side of her head.  It was also possible she would need two shunts.  And the risk of complications was higher because of the tiny space he had to work with.  That all just made it harder to let her go to theatre.  

As always my little girl fought and kicked and cried and pleaded as she was sedated.  All I could do was reassure her, kiss her, hold her close to me.  Then when she was asleep, I drove straight out of that hospital, hit the Disney store and bought her every character from the Little Mermaid that I could find, just because its her favourite film at the moment, every single day she asks to watch it! 

When we got back it was ages before they called us to recovery.  I was panicking.  I raced down, and the first thing I did when I seen her was check her head for how many wounds there was.  And there was just the one!  Which meant there was only one shunt and it was in the same spot as it always is!  

She was a little cranky when she woke up, but as always she bounced back quickly and was playing in her bed a few hours later!  She never ceases to amaze me, how strong she is.  

Turned out the top part of her shunt was blocked again.  Her neurosurgeon said it was fascinating  how Caitlin's ventricles always swell with a blocked shunt, but this time they were totally normal, even though the shunt was blocked.  Our Caitlin just doesn't go by the book!

The next couple of days passed slowly, they always do in hospital.  Not much sleep, lots of observations from the nurses which Caitlin didn't like.  Kid got through alot of chocolate as a treat for letting them get a blood pressure reading lol.  The only thing that made this hospital stay a bit easier was that her friend from nursery was having a operation too, so the two of them played together :) We even escaped to the hospital canteen for a half an hour so Caitlin could see her little sis :)

After almost four long days we were discharged.  But not before one last scan, a DMSA scan to see how Caitlin's kidneys are.  She had to lie in a scanner for that one, and had to lie still.  Which was no easy task.  It was meant to take 15 minutes.  Not with Caitlin!!

After that was done it was finally time to go home.  Caitlin was one happy girl.

She's got 6 weeks to start independently walking again.  Then we have to see neurosurgeon again.  If she's still not doing any independent walking, then we will probably be admitted again.  Let's hope it doesn't come to that.  I think I will burst with happiness if she does start walking again, I'm so afraid it's never going to happen and those two short months she did walk by herself will be the only time I will ever see her do it.  I have a strong little lady though, this is just another hurdle, another bump in the road.

A quick update

The last week has been crazy.  Caitlin was admitted to hospital last Sunday for the ICP monitoring.  She was super excited to be getting a big bed to sleep in.

She settled well until bedtime came, and she wouldn't sleep...couldn't really with all the noise.  There were two very small babies on the ward as well as a 1 year old so that combined with nurses, parents & visitors running in and out, it certainly was not quiet!  Caitlin also reignited her dislike for the blood pressure machine.  She hadn't had to get blood pressure taken for so long that when they did it at her routine appointment a couple of weeks ago she was fine, but it must have brought back some memories as from the minute she seen it on the ward she got very mad at the nurse and wouldn't cooperate which resulted in not being able to get a reading most of the time.  Then when she was finally dropping off to sleep the doctor showed up and said they were taking her to the treatment room to take bloods.  At 10pm.  Do these people not know a 3 year old should be sleeping at this time!?! We had been there from 4pm so I was annoyed they couldn't have done it earlier.  Anyhow, Caitlin's hand ended up very bruised as they tried to take her blood, she got very upset and was glad to get back to her bed when they were done.

Monday morning came & she was supposed to be second on the surgery list so going around 10am.  It didn't quite work out like that.  The neurosurgeon came and knocked her down to last on the list but kept her fasting, the poor child ended up fasting for 17 hours..they took her down at 2pm.  She was very good, asked a few times for a drink or something to eat and towards lunchtime shed a few tears from being so hungry and thirsty.  I hate denying her food and drink when I know she needs it.
When the theater staff came Caitlin didn't want to go so I carried her down and she started to cry when she seen the CT scanner.  She was sedated before the CT scan and the plan was if the CT scan was clear she would have an ICP monitor inserted and if the CT scan showed her ventricles had increased in size, the neurosurgeon would go on ahead and do a shunt revision.  Holding your child still as they cry, struggle and plead with you while the mask is over their face giving them the anesthetic is just something that never gets easier.  I just give her kisses and keep telling her it's okay, that she's going for a nice sleep and I'll be there when she wakes up.

Once she was sedated, me and her dad left and did what we always do when she's in surgery - hit the toy store to get her a present for when she wakes up!! As soon as we returned the nurse told us to go to recovery as she was just waking up.  We raced up there and she was starting to wake, was in discomfort & was trying to pull the wires out of her head.  She was not a happy girl!

But anybody who knows our Caitlin knows how quickly she bounces back and this was no exception, within a few hours she was up playing and getting back to herself :)

I asked the nurse what the readings should be on the monitor, she said they shouldn't be above 15.  I kept checking it and it was looking good, the readings were always between 1-10.  I left that night to look after Aoife, David stayed with Caitlin.  I was pretty confident it wasn't her shunt and so were neurosurgeons.

Next morning the neurosurgeon glanced at the monitor and said it was all looking very reassuring.   But then when he studied it further later that morning he said the words "shunt revision."  Unfortunately during the night the monitor picked up pressures as high as 33 which is way above the normal range.  So he thinks the valve on her shunt isn't working right.  Another shunt bites the dust.

I was shocked, deflated, sad for my baby.  We were discharged the following day with tomorrow (Monday) as the date for surgery for shunt revision.  I would rather shunt surgery than detethering surgery any day so I'm really hoping that this is the cause of her walking issues and once it is fixed, the independent walking will come back to her.  Right now we're stuck in the waiting game once more.

We are being admitted to the hospital again in a couple of hours for the surgery tomorrow.  I made sure we packed in as much fun as we could over the past 3 days at home.  We went to the park, to soft play, fed the ducks and went swimming, Aoife's first time at the waterworld and who better to go with than her big sis!  It was a brilliant few days.  

Once again, if you could keep Caitlin in your thoughts and prayers, for a quick and easy recovery and for this shunt (number 7!) to be the one that works for a long long time.  Thank you :)

What's going on with Caitlin...

I wish I could say what's going on with Caitlin but I just don't know.  Nobody does.  It's been two months now since she has independently walked.  The theory that she's regressing because of her sister being born is becoming less likely as time goes on.

 We had a neurosurgery appointment on Tuesday and I told him the facts. That her knees are bending more when she bears weight on her legs, but she's still walking well with a walker, but not attempting to take any independent steps anymore.  She just says, "I can't, I'll fall."  Her physiotherapist called on Monday and said she has noticed she has definitely lost some strength, that she's pulling up onto her feet using her arms more rather than her legs.  But she can't tell if it's down to her syrinx's on her spine or if she decided she didn't want to walk anymore and because of this she has lost strength through not maintaining independent walking.  I expected to be referred for an MRI at the appointment on Tuesday so when the neurosurgeon said he was admitting her I have to say I was shocked to say the least.  He felt the shunt needed to be looked at although he feels its not her shunt, either do I.  But he wanted to rule out shunt problems before he goes anywhere near her spine.

So we're going down to the hospital to be admitted on Sunday.  They are doing a ICP procedure (Intercranical pressure monitoring) on Monday morning.  This involves drilling a hole in her skull, inserting a pressure monitor & hooking it up to another monitor.  So, my kids head is going to be connected to a monitor for at least 42 hours.  How I'm supposed to get her to stay in her hospital bed, not let her move around much and stay happy is definitely going to be a mission! It's an invasive procedure and I have my doubts but the neurosurgeons know what they are doing and they reckon the pressures in her head could be effecting her ability to walk - hence why they're going to monitor the pressures for a few days.  If it comes back with a problem, she'll need another shunt revision.  If it's clear we move on to an MRI of her spine, to check the syrinx's to see if they've got bigger or smaller, to see if her spinal cord is being further damaged by them.  If that comes back clear I imagine we will get to go home, if it doesn't we're looking at detethering surgery.  I don't even want to go there yet. Oh, and they want to squeeze in a few more tests while we're there to check if her bladder & bowel are working as they should!

So right now I'm trying to organise, plan, prepare.  It's going to be a tough week on everyone especially Caitlin.  Aoife is just 3 months so I'm not exactly thrilled that I'm going to be apart from her for so long, but Caitlin needs me more.

After 2012 being such a fantastic year, Christmas being absolutely amazing, I had high hopes for 2013.  Hopefully it is just a rocky start and it will get better.

On the night we found out she would be admitted, I went to bed feeling very sad for my baby.  Then Caitlin's Daddy sent me a text of 2 poems, both for Caitlin.  I shared one on Facebook, the other I'll share here...

Her smile brightens up the darkest room,
Her eyes shine bright against the gloom,
Her laugh fills out hearts with such joy,
She gives us all so much to enjoy,

The problems she has are so unjust,
Yet she carries on and so we must,
Wear a smile whilst holding back tears,
Remain strong to calm her fears.

Her strength to recover is much to admire,
We must remember that as we tire,
That it is our angel who is in that bed,
Looking for her friends Harvey and Ted.

Soon she is back making a mess,
Wearing her masks, pretending she's Jess,
Playing with toys and singing her songs,
She forgets the problems,
Lets hope it's for long.

Please keep Caitlin in your thoughts and prayers, that we find strength to get through the next week with our family separated and our big girl having to go through all the tests, needles & fasting for surgery or surgeries & for her recovery.  Let's hope we get some answers.