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 :)
She is such a doll.I will definitely be praying for her tomorrow. Maybe this shunt will be lucky number 7 :)
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