Why is Paul doing this?
This is a question I often ponder when all I want to do is go to bed and he is sat in the study writing his blog for that day. There are a number of reasons why he began this. 1) he wanted a project. 2) He decided that raising money for charity would be a good project. 3) He also wanted to write a blog. And 4) He wanted to provide a different view of CHD.
Paul had never really been involved with anything relating to his heart until recently, he never felt that he needed to be, after all it wasn’t a big part of his life. His heart problems occupied about 30 minutes a year for a check up. Then when I started asking questions he discovered GUCH on the internet. Although Paul could see great benefits into the work of GUCH he still felt that it was not really for him as he no longer really has a heart problem. It then struck him that the reason he feels this is because he has never been treated as though he has a heart problem (except for the life insurance companies!!!). This is what he is hoping to change for point 4, there are many parents out there, and I know that a large amount of this blogs following are parents of children with CHD, not people with a CHD, who will feel that they need to wrap their children in cotton wool because of their diagnosis. Pauls message is don’t.
Yes you should make sure they have antibiotics for the dentist. Don’t however treat them like they will break, they won’t thank you for it, they will either rebel and get green hair, 200 piercings and join a drug taking hippy commune or worse, they will become one of those irritating people who claim that they are allergic to everything and that they need to live in a special bubble because they have never been exposed to life (you know what I mean!!!!!!). Basically what I’m saying is treat them like you would any other kid, their CHD does not define them unless you make it that way.
If you are an adult with CHD and what I have just described is you, then you probably hate me right now, in which case I still make no apology, its not too late…
posted by worsthotels @ 12:34 am
3 Comments:
There are many valid points in these words however like most things in life there is a balance.
For some reason, call it stupidity perhaps, we were quite relaxed with Connor's CHD post surgery and despite being told he required further surgery in the future, we treated him no differently apart from taking him to the cardiologist fortnightly, given him heart medications et al twice daily, seeing Allied Health workers at the hospital almost weekly ie physio, speech therapist for eating initially and dieticians.
At three months of age he picked up a bad virus (common cold) and couldn't seem to throw it. We took him to our local Doctor who couldn't pick anything as being too serious ie no sign of pnemonia etc. He was weighed between two visits to ensure it was not causing weight loss. At the time when comparing the weights I did the sums in my head and despite usually being quite good with calculations (yes they still taught that kind of thing when I went to school)I brushed over what I thought was a weight gain of several hundred grams in a couple of days.
The next day Connor was sweating and looked very grey and was irritable. Family and friends told us he looked really sick .. we replied that he just had a cold and must be sweating it out .. afterall he had been checked over the day before.
Later that evening my wife and I both reached the stage of severe concern when we noticed a shallow breath rate up around 120 breathes a minute. We quickly got to the hospital to find him in serious condition. Handing him to the Director of the Emergency Department I recollected the weight gain and passed on the information saying that I think he may have retained fluid (sign of heart failure).
Sure enough he was in heart failure, in fact by 10 pm that night in critical condition. Fortunately he was stabilised.
What am I trying to say here? Sharon and Paul are right in what they say in my opinion, however you still need to have the condition and what goes with it stored in your grey matter. We are told by some medicos Connor should not be in childcare .. he get's too sick. Our balance, take him out for Winter and have another go. If at any time we are informed that something would bring forward surgery or is agreed by several to be detrimental, then of course we would observe and follow the recommendations.
What a long waffle .. in summary I agree in general but sometimes you still need to follow a few rules past the dentist antibiotics .. every case is different.
If you looked at the photo of Connor at The Special Zipper you would not thing there is anything wrong with Connor (apart from scarily looking like his dad, that would be me, or so I am told). Having said all that we are still pretty casual and echo those exact words "if we have to wrap him up in cotton wool, then we seriously need to consider the next surgery if he is that sick as what quality of life is that?"
My point in all this is somewhere in there .. I think.
Ok I admit it .. I must have been blonde in a former life (sorry to the blondes) .. why would you need to look at a photo at "The Special Zipper" when there is one next to the comment which can be enlarged?
Our prayers are with Lucy and her family ... I am not sure how long ago this was posted but hopefully all is still going stong.
The Special Zipper
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