Friday 28 August 2009

I have a visitor. PAT is here.

PAT has arrived and is an unwelcome visitor. She came a little later this time as I've been busy and my head has been elsewhere, but she's here all the same.

PAT - Pre appoinment tension (this is an abridged version with all credit given to the lovely Sheran at Heartline)

PAT is a chronic condition suffered by parents with sick children. The symptoms of which are mild until the arrival of the brown envelope where by they become ever more acute leading up to the appointment day.

The arrival of the envelope and date is sometimes accompanied by the very early stages of the acute condition. Trembling hands, moist eyes, butterflies in tummies, feelings of both regret and sadness are common. As is an overwhelming physical urge to burn the blooming thing and run away with the child in question. Sensible sufferers can now go on the internet and book train tickets. The additional cost of transport can sometimes cause an additional strain on sufferers of PAT.

Shortly after the arrival of the envelope sufferers often report an increase in symptoms in their child. Common symptoms in CHD children include blueness, breathlessness and fatigue all of which increase in the weeks leading to the appointment.

It is not uncommon in sufferers whose children have the additional diagnosis of failure to thrive to start force feeding their children with a diet higher in fat, chocolate and rolo yoghurts. As panic sets in the childs consumption of double cream increases proportionately and can sometimes double. Older children may complain but can normally be bribed by playstation games. Do not forget to hide the dance mat and any favourite fruits! PAT sufferers are encouraged not to tell their partners the full cost of the shopping bill during these weeks.

PAT affects parents in different ways – a fortnight before the appointment (or as soon as the symptoms in your child are highlighted) it is not unheard of for parents to change. Appetites can increase (in the form of comfort eating) or decrease but rarely stay the same. Relationships are sometimes strained especially if one parent is more laid back that the other.

It is not uncommon for the slightest thing to cause major family rows especially if his friends or family insist that everything will be OK at the appointment. Things not to say to PAT sufferers include ‘it’s a miracle what they can do these days’ and ‘I don’t know how you cope’.

Other strange behaviour include poor sleep, lack of desire (female PAT sufferers often go through a stage of being petrified of getting pregnant), nightmares of the time your child was in hospital – or most commonly a fear that your childs symptoms have now developed at such an alarming rate you really should have booked a single train ticket to the hospital and will be packing an overnight bag.

Posting on Heartline is a great idea. As anxiety builds so does the consumption of chocolate, wine and cigarettes (if smoked). All of which leads to increased despair.

Once the aforementioned bag is packed expect to be up all night feeling like a condemned person. Your child will be so poorly by this time you will be up checking them every hour anyway!

The morning of the appointment!

Early morning appointments mean up at the crack of dawn – this is fun when you have had no sleep. Other sufferers recommend a cup of strong tea, two paracetamol and a shower in something zingy this seems to work well. As does the wearing of lucky clothing – top, pants, jewellery.

Wake the child up but do not expect it to eat. Feeding a pre appointment child at 5am together with its meds will lead to it throwing up at 8am in the middle of a packed commuter train (hence packing sanitary protection even if not normally required)! Far better to take some bread for them to eat later.

It is acceptable to put little ones in their hospital top the night before – you will be stressed enough without them being!

It is not uncommon to feel sick, nauseous or have an upset stomach the morning of appointment. Feelings of despair and great sadness are normal as are the ‘why the hell did this happen to ________’s/. Some suffers in advanced stages can suffer from shakes and numbness.

One thing that female sufferers should not do is wear make up. Because if the news is good at the appointment PAT makes you inappropriately friendly to medical staff (kissing and hugging can happen). I also recommend a very good deodorant as stress and hospitals can make you very hot and sweaty.

Post-appointment it doesn’t matter how it goes there will be tears – perhaps elation – but expect the next few days to be rough. You have been reminded that there is something wrong with your child and they will be getting away with murder. Travelling to the appointment is tiring for your child and they will be lethargic afterwards – this increase in fatigue will automatically be put down to whether it is their heart.

Once the clinic letter has arrived (which hopefully you can decipher) the symptoms of PAT gradually return from the acute to the chronic. This is normally about the same child as your child steps a bit too far over the line and you start telling them off again!

Until the next time...

Tuesday 25 August 2009

My Precious First Born is 21 today!

He's so sweet. And so fat!

Friday 21 August 2009

Good news.

My middle child (not so much of a child now) picked up his A level results yesterday. He got his grades and is off to Uni in September. Watch out Lancaster!

And Emily is back from Portugal, having had a fabulous time. I'm awaiting photos but I think she's vetting them first!

Sunday 16 August 2009

And more....




These are some of Em's arty shots. A bit of an improvement on my snaps.

Friday 14 August 2009

More holiday photos...



This is Fred. You were wondering about him weren't you?







And a couple of Emily doing her thing. Which usually means throwing herself off anything remotely high up.

Wednesday 12 August 2009

Children's Heart Federation - Project Portugal

Well, we've left Emily at Gatwick Airport in the care of the Children's Heart Federation - she's jetting off to Portugal with them as part of their Teen Forum Activity weekend. I was surprised to observe that her's wasn't the biggest suitcase on the trolley. She must have cut back on the number of pairs of shoes she intended to take.

They will be updating their Facebook page so feel free to check it out.

Children's Heart Federation on Facebook

As I have the laptop to myself for a few days I might be able to upload some more holiday photos shortly.

Edit :- I have just realised (whilst wandering the aisles in Sainsbury's) that I didn't tell Em that she'd need a travel adapter for her hairdryer and straighteners. I will be in Big Trouble if she's been unable to borrow one and her hair is like a bird's nest!

Monday 10 August 2009

The Walker with Heart

He's here on The Plinth raising awareness of Congenital Heart Disease and adding to his walking total.

WELL DONE PAUL! YOU'RE A STAR!

Paul Willgoss - The Walker with Heart

Saturday 8 August 2009

Back from holiday. Otherwise entitled 'What is that strange brown stuff on the living room ceiling and how did it get there?'

Yes, there are many similar questions which I suspect will go unanswered, for example....

How do you fill a 240 litre recycling bin, 4 carrier bags and a crisp box with beer cans in 10 days?

At what point does a 'small gathering' become a party?

Whose is the loose change I found in my bed and where is my extra pillow?

Why is there egg (hopefully it's egg) on my kitchen ceiling and what appears to be red wine in my tea caddy?

Who is the owner of the Nicorette gum in the bathroom cabinet?

And has there been an experiment to see how long it takes for the scraps in the windowsill recycling box to turn into penicillin?

On the upside, my lovely neighbours appear to have no complaints, the police weren't called and the house hasn't burned down. I'm grateful for small mercies but do appear to have been lax in teaching the boys the finer points of cleaning. This must be addressed.

As memories of a relaxing holiday appear to have been rudely ushered out of my mind and time short, here it is in pictures;

We went to the seaside





The weather was unpredictable but we managed to sunbathe, go on the water and in the water and have some laughs.












We ate fish and chips and drank much wine (although it seems not as much as the boys).

This is Fred. He liked fish and chips too.

Hmm where did Fred's photo go? You're intrigued now aren't you?

More to come but I'm drowning in washing, the holiday stuff, plus what I left in the basket before I went, plus a large pile of ironing the boys haven't done. I'm ignoring that one. Still, they did wash and they didn't flood the house.