The niggling worry started increasing, taking over most of my thoughts the week before last. Caitlin was really cranky when she woke up, didn't like the light and I was debating whether to take her to hospital. She was still her happy, bubbly self most of the time and I try not to run down to the hospital at every possible sign of shunt malfunction, because anything can be a sign of shunt malfunction. I don't like putting her through the inevitable blood tests and CT scan (particuarly when she's been exposed to way too much radiation already) unless I'm fairly sure something isn't right, that it's probably the shunt. Caitlin's shunt just likes to be difficult and leaves subtle signs that it's not working as it should, leaving me in a panic as to what I should do. On the Tuesday of the week before last her bus escort mentioned Caitlin was limping in school. That was when the niggle turned into loud alarm bells screaming...it's the shunt!! So I asked Caitlin to walk and sure enough she was dragging her left leg behind her. I immediately started mentally planning 2-3 days in hospital, who would mind Aoife, could David take time off and then Caitlin suddenly stopped limping! Way to confuse me kiddo ;) Still, I knew something was up so planned to take her in on the Thursday. I was at university on the Wednesday and called Caitlin's physiotherapist to ask her to have a look at her leg just incase she had hurt it and that was prehaps what had caused the limping. When she called me back to say there was no injury and she also felt her walking was regressing again I left uni, collected Caitlin from school and took her straight to A&E. There she had the blood tests, was assessed, had the CT scan and was a complete trooper. Usually Caitlin is terrified any time a doctor comes near her and she needs to be sedated for the CT scan but this time it was a total transformation. She concentrated so hard at lying still and did exactly what the nurse asked. The nurse couldn't believe how well she did for a 3 year old :)
Anyway, the doctor came back a while later, told us her CT scan was normal so he wasn't concerned about her shunt but the neurosurgeons were concerned that her Chiari Malformation was becoming symptomatic. It was like a blow to the stomach. Honestly, I'd be so concerned about the shunt that the Chiari didn't cross my mind. Tethered cord did but Chiari - I was gobsmacked. I guess we've had so many shunt problems I didn't think she would have chiari problems too. They let us go home with a plan for the neurosurgeon to call us the following day.
I tossed and turned that night, decompression surgery or shunt surgery a possibility for my little girl, our trip to Disneyland didn't look likely. The neurosurgeon called and told us to come in with a bag the following day and that we did, unsure of what was going to happen and when we would get home. I hate the not knowing. I live by life by lists, not knowing what's going on and everything being so up in the air leaves me very uneasy. Mostly, I was so worried about Caitlin. After a discussion with the neurosurgeon he changed his mind from chiari to shunt based on the fact that I explained the last time Caitlin's shunt blocked the CT was clear so it was still possible it was the shunt. He agreed her symptoms were the same as last time so he wanted to explore the shunt. I asked would we still be able to do our Disney trip for her 4th birthday and he said it wasn't possible. I was gutted, Of course her health is the number one priority but she so deserved this trip. She's been watching YouTube videos of the park festivities for weeks and she was SO excited. We had booked a birthday dinner for her with the Disney Princesses and she couldn't wait. I was really looking forward to it too. I couldn't talk for a while after the neurosurgeon left, I guess I was trying to digest everything. David explained to Caitlin that Disneyland would have to wait and she turned to me and said, "It's okay Mummy, we can still go, it'll just be a different time." Imagine that, my little girl consoling me!
Despite fasting for hours, more blood tests and another CT scan, Caitlin was still full of smiles and chat. She has such a wonderful spirit does my girl :) Everything happened so quickly that day, at 10am we didn't know what was happening, by 2pm I was carrying her down for surgery. She was so brave when they had the mask over her face, I talked to her, told her she was just like Brave the Princess and she smiled and blew bubbles into the mask until she drifted off. I hate that part, handing your precious baby over for surgeons to do brain surgery is tough to say the least. The waiting isn't much better! Time ticks by so slowly. Eventually 2 1/2 hours passed and they said we could see her. She was groggy, sore, but still managed to try and give the thumbs up.
Not long till we got smiles though :)
Turned out they didn't even explore her shunt! The neurosurgeon we spoke too had planned to insert a second shunt as we all agreed where it was now just wasn't working for her but he also planned to remove the "old" shunt at the same time. He was over ruled by the head neurosurgeon who I'm guessing felt it was too traumatic and dangerous to insert a new shunt and remove an old one. So we don't even know if it was the shunt causing the issues as they didn't check! I do think it was though as Caitlin's walking has improved, she's happier, isn't complaining about light any more although trying to get her to eat is still an issue! She struggled with the pain, it's probably been the worst pain she's had from all the shunt surgeries. I'd do anything to take it from her. I felt like the worst mum in the world when she cried for me to stop hurting her. All I was trying to do was change her nappy but any movement had her in agony for 20 hours post op. That was a long, hard 20 hours. Then the neurosurgeon wrote her up for different pain relief and within an hour of taking that she thankfully started to improve.
We took her down to see the christmas displays at the hospital, she was very pleased to see the reindeer, (Caitlin is obsessed with Rudolph at the moment!)
She also loved the plaster on her head, so much so that I only got it off her yesterday when the doctor said we could take it off 5 days ago lol. She was very proud of herself when she climbed into the chair here and refused to let me sit on it, (this lovely green chair was my bed while Caitlin was in hospital!)
We were lucky this time, we were the only people on the side ward which has never happened before but it was very welcome! Although it was still noisy at night it was nowhere near as bad as it usually is! Caitlin amused herself with films, toys and I even managed to find some playdough on the ward,
Still, hospitals are draining. And boring. When the neurosurgeon came in Monday morning I was very keen to get home! He agreed we could as long as Caitlin had another CT scan (her 3rd in a week!) and again she did fabulous. When the nurse came in and said the neurosurgeon was happy with the CT scan and we could go home Caitlin wasn't waiting around....
Freedom!!
So we're home now. We should be in Paris as I write this settling into our Disney hotel, ready to hit the parks tomorrow for Caitlin's birthday. Instead, she's recovering from her 10th surgery, yup...we're into the double figures now. These things can't be helped. Of course it sucks, I'm gutted. I'm also very grateful, we are very blessed to have Caitlin in our lives and I can't quite wrap my head around the fact she's four tomorrow! I don't know what it is about 4, it just seems like she will lose the last bit of her babyness when she's a big 4 year old. Even though we're not were we planned I still have a few surprises up my sleeve to hopefully give her the perfect day she deserves. Happy Birthday to my beautiful princess. Love you always and forever xoxo
