I am writing this blog from Katie's bedside in Glasgow's Yorkhill Hospital.
We are on the surgical ward after Katie going through major surgery. The procedure is called a fundelplaction where basically the stomach is stretched and wrapped tightly and neatly around the osephagus and then stitched together.
This will hopefully stop or curtail the volume and pain of the reflux the Katie suffers from. She has had this since the first weeks of her life and the pain she suffers from... well it's heartbreaking to watch, even with all the medicines she is on (gaviscon, domperidone and omeprazole) some days these don't even touch it!
To give you an idea of how acidic it is also, one evening when Katie was vomiting and refluxing a small amount landed on Derek's cheek, he wiped it with a hanky and said his cheek was sore like a burning, he had a red mark on his face and his skin was coming off! If this is what a small amount did to Derek, what the hell is it doing to Katie's insides?
This surgery has not been a decision we took lightly, in fact it's three years we have been discussing this with Katie's surgeon, but we are now at the point where there is no more medicine to try!
From a parent's perspective, it is unbearable watching your child in pain, suffering and looking at you to help take the pain away!
How do the children feel when all we can do is look back at them, sobbing and telling them we wish we could help them but can't. Our job is to protect our children, it's built-in instinct. So when we can't do what should be natural, where do we turn?
We finally made the decision about the end of February when she was last admitted to hospital with a bug on top of a cold. We took Katie in on Valentine's night explaining how she had picked up a bug and was now not being able to tolerate feeds, requiring more suction, key tones had changed etc etc...
All the vital signs that tell us Katie is poorly and if not treated soon then she can deteriorate very quickly, we took Katie to hospital before she was at this point, but we were met with: "She isn't unwell enough to come in on iv drips."
What part of bringing her in just now before she takes gravely ill did you not hear? Apparently all of it, so we went home and, as instructed, carried on doing what we were doing.
Don't get me wrong, in a way I suppose the hospital can recognise how well looked after Katie is and that we are more than competent to carry out the care we give her, but when we go for help that means all we are doing isn't working and she needs medical help.
Thats exactly what happend 24hours later. when she was admitted on iv fluids, anti-biotics, the works! Now is it just me, or does this not prove listening to parents as they know best works?
I'm forever telling professionals (and not just health ones) that I will try and not tell them their job as long as they don't try and tell me mine! We live with our kids 24/7, we know the difference when they are crying: whether or not they are just upset or if they are sore!
Anyway, thankfully there are some who do listen and who do rely on the parents/carers to guide them and Katie's surgeon is one of them.
This admission I think was the final straw so we arranged to meet him last month and we all agreed the time was right to operate. The waiting time was to be a month so we were hoping it would fall into the Easter holidays but - just typical - the first space was just in time for nursery school starting back.
We spent the holidays doing as much as we could with the Twincesses but there were restrictions, apart from someone stealing the sunshine. We did have to keep contact to Katie minimal as we couldn't risk her picking any more bugs up before surgery.
On top of this my Granda took unwell just before Easter with a massive stroke. We were all told to expect the worse and that the brain had suffered severe trauma and damage. The picture painted was grim, and for days my Granda was in a deep sleep.
All the family kept a constant vigil by his side. We would all keep talking to him - they always say to do that as they can stll hear! Well, he must have got fed up listening to me and my cousins (and there are a lot of us) my granny, my dad and all my aunties and uncles, as my Granda opened his eyes, he even managed to speak faintly to us again!
But after another week and a half my Granda passed away on Easter Saturday. It was very peaceful for him and us. We even managed to tell him Celtic won 6-0 that day (my Granda is Irish and a huge follower), but he passed away that night and his funeral was Saturday just past.
So it has been a tough few weeks, but thankfully Katie's op went well, the doctor managed to carry it all out with keyhole surgery, she is sore just now but is on morphine and other vital fluids. She will be in for a few days at least and only then we will see the benefits of this operation.
She is a tough wee cookie and watching my Granda I now know where Katie gets it from...
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