Caitlin had her first seizure on Friday. We were sitting on the sofa, I was putting her shoes on for her, and all of a sudden her eyes rolled back and her eyelids started fluttering so fast. I panicked and kept repeating her name, tugging her arms, anything to get a response. Her body stayed still but she was unresponsive. Then, after about 20 seconds she came back to me and started to cry. I hugged her tight and she wouldn't let go, she just buried her little face into my shoulder and held on tight. I was shaking myself, it was so unexpected. Her fonatelle had been up and down all week, but as you know, this happens with Caitlin alot. So now, it was time to take her to hospital. It was the same as always - only Caitlin was now crawling so was constantly wanting to go down on the floor, and everytime I let her down she bolted straight for the doors to try to get out, bless her. She was fine in herself, but seizures don't happen for no reason, so this needed to be investigated. A shunt series showed her ventricles had grown - her shunt was blocked AGAIN.
I was the one who burst into tears when they told me, I had been trying to convince myself this shunt would last and now my baby would have to go through all this again. But I pulled myself together, I had too. My girl needed me to be there for her as she started to fast for surgery. From midday she fasted. We waited, and waited..and waited some more. The neuro showed up that evening, said she would be going to surgery before midnight. Caitlin finally fell asleep about 10pm, after exploring her cot several times, crawling around it, and pulling herself up to stand for the first time in her cot! Trust Caitlin, she always knows how to cheer me up :)
Me and her Dad stayed up waiting for the theatre staff to come for her. At 1.30am, we were told surgery wasn't happening. Cancelled until the morning. That really pisses me off. We had already spent ten hours soothing and trying to distract our hungry little girl and now they're telling me she could have been eating that whole time. According to them, "this happens sometimes." Well, it shouldn't.
Fasting began again at 4am so I give Caitlin for a bottle at 3.30am which she drank while sleeping, then managed to get a couple of hours kip myself. Before long, Caitlin was awake, crying for her "Yummies". She was beside herself with hunger. The nurses decided to put her on a drip because she had had very little fluid and no solids in such a long time. This annoyed me off even more. If she had have went for surgery when she was supposed too none of this was needed, and it just upset Caitlin even more, who tried desperately to pull the drip out of her hand.
Eventually at 10am, I went to the nurses and pleaded with them to get her to theatre, to get it done with. It was getting unbearable, and nothing was consoling Caitlin anymore. Thank god, they rang the neurosurgeons and Caitlin was taken at 10.30am. Her Daddy was meant to go in with her, but at the last minute I did. I cuddled her and soothed her as they put the meds into her line and her cries quickly faded and her eyes closed as she went off to sleep.
While she was in surgery, me and David drove to the toystore and picked up a teddy for her, some books, toys and dvds. We had just returned when we were told we could see her. She was awake already when we got down! The nurses couldn't believe it, she was sitting up yelling when they arrived. We give her some warm milk and she settled back down to sleep when we got back to the ward. Then when she woke, we give her whatever she wanted. That's my rule when Caitlin is in hospital - there are no rules. She can suck on her dummy as much as she wants, and eat whatever she wants, and watch as much cartoons as she wants! And that's what she did!
The neurosurgeon came round and told us, as usual, Caitlin's shunt was blocked at the top. He shortened it, changed the tubing to a different type and used a thicker tubing in an effort to stop it from blocking. I think they'll try anything at this stage. The neuro said half of all kids with shunts will block in the first two years. Fair enough, but Caitlin's has blocked five times now. He said books will tell you that seizures are not caused by a blocked shunt, but in his experience they do. Only time will tell if Caitlin's seizure was caused by her blocked shunt. I hope so. I'm trying not to think of seizures becoming a part of our lives as well.
All in all, it was probably the easiest hospital stay we had, despite having very little sleep. That was because my friend, Kirsty, another sb mummy and her little girl Zoe, was in the next bed to us on the ward! Zoe is 2 years old and recovering from decompression surgery. Me and Kirsty chatted away, swapping toys, dvds and books so the kids never got bored. We got out on Monday but Kirsty and Zoe are in for the meantime - Zoe has had some complications. Please say a prayer for them that they get home soon!
Once again, I would like to thank everybody for all their thoughts, prayers and support. I don't know what I would do without you all. xx
