Clare’s daughter Katie, who suffers from bulbar palsy, recently returned home from hospital after a fundelplaction, a major operation which the family hope will help to curtail the pain she suffers.
Katie and her twin sister Holly, who does not have a disability, are due to start school next term.
- Read more about Clare and her family
It’s a few weeks since Katie’s surgery, and so much has happened since.
She got home after six days in hospital and I have to say the first week or two she seemed to be doing amazingly well for what she had just been through.
We felt a huge sense of relief that at last maybe this was the end of her sickness and more importantly the end of the pain, and that she was now going to have a somewhat good quality of life.
We were feeding her little and often. As a part of her stomach was used to wrap round the osephagus, it could not hold and tolerate the volume of milk that it was used too. We slowly increased the volume, then slowly increased the rate that the machine pumps it in at.
One night while in her chair, she started this almighty screaming - a sore scream.
My heart sank, I could see in her face that she was in pain, then she was signing she was sore and she was holding her tummy. We didn't know what to do, but immediately I stopped her feed and she eventually settled down.
Next morning she was her usual wee happy self, so I gave her her meds and plugged her in, watching her very closely. She started rifting (burping) - I have never heard anything like it.
We had been noticing that when venting her tummy (taking air out her button) she had considerable amounts, sometimes up to 80mls of air.
We knew this wasn't normal for Katie, but we put it down to things settling down inside her after the surgery. As the days passed I dreaded feeding her and at times Katie was signing: “No mummy don’t feed me!”
She has been constantly gagging and trying her best to be sick and I was back to feeling the way I did before - helpless!
We had an appointment at Yorkhill Hospital to see the dentist, but I called ahead and arranged to see the gastrostomy nurse while we were there. After the dentist, we met the nurse and I explained everything that had been happening with all the air in her tummy, the pain and the constant need to try and be sick.
She could see how anxious, worried and upset we were, but she explained that this was all quite common – which didn’t make me feel any better. She said she would mention it to Katie's surgeon and we were to get in touch if we were still concerned.
I left Yorkhill feeling ill. I don’t really know what was I hoping for - a magic medicine that would stop all this?
I broke down in the car and told Derek to drive - I could see in his eyes he felt the same as I did, but as usual he showed his broad shoulders, took deep breaths and said: "it's ok, she'll be fine."
But she won't, she's not fine, and this time it's our fault - we decided that this surgery would be best for Katie, we put her through it.
It was the first time either of us had admitted that we regretted it and wished we could go back and not put her through it. But it’s done now, so we need to persevere!
It was only a couple of days later when Katie had her first, and so far only, large vomit. We panicked, however Katie did not and we could see the relief in her face.
That was when it dawned on me just how much relief she must feel when she’s sick - and because of the operation I've taken that away from her.
I got in touch with the gastrostomy nurse again who said she had been expecting a call from us, and we were to go straight up! The nurse explained that the doctor wanted it passed on that the kind of reaction Katie is experiencing is 'normal' and can last for weeks.
The word I seem to be hearing just now is 'persevere’, so I suppose that’s all we can do.
Life has been a roller coaster of emotions and while we try to minimise Katie's pain, 'normal' life (whatever that may be) has to continue the best it can.
The twincesses graduated from nursery and what a day that was. It was lovely to see all the kids stand up and collect their certificates and wonderful for us to watch our girls and see these wee individuals and how far they have both come in two years. They are so grown up and both ready for school.
As I have said in a previous blog, the school are more than ready for Katie to start, so I think that just leaves me now to deal with it!
I have always had in the back of my mind that at some point Holly would ask questions about Katie’s health, especially when they get bigger. However I can honestly say that I never thought Katie would ask herself.
A couple of weeks ago we had to venture out to Asda, so my mum said she would sit with the girls to save us having to take them with us. We were out and back within an hour and when I walked into the living room my mum and the twincesses were cuddled up on the couch with a book, but I knew my mum had been crying.
I asked what was wrong and she said that Katie had wanted to hear Rapunzel. As my mum was reading the story Holly had started to ask questions like: "Nanna, why is Rapunzel’s hair long, and why is it magic hair?"
My mum said “It’s magic hair because when it glows and touches sick people it helps them get all better!”
When my mum said that, Katie started signing to my mum, asking her: if she met Rapunzel and touched the hair, would she will be able to walk?
I could feel the tears fall, but I couldn't move, I just stood there looking at them.
I asked Katie if she would like to be able to walk, and she signed “yes please”, I asked if she would like to be able to talk and again she signed “yes please”.
I asked her what she would say and she signed “I love you Mummy.”
God, I’m bubbling again sharing this with you, but this is part of our life and I said when I started blogging that I would share the good and the bad. This is a priceless moment - how can you tell a little girl that her biggest dream is part of a fairytale?
We are just heading off now to Legoland for a few days with the Twincesses so we are hoping that this will be a distraction from Rapunzel. I can worry about our trip next month to Eurodisney on our return.
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