SNAFU

A lot of people talk about hitting a bit of a snafu but actually, grammatically, that can't be correct.
SNAFU technically is a military slang term which stands for Situation Normal All F**ked Up.
Not the politest term around and sometimes the way and the people who use it surprise me.

However - it really does describe the last couple of months for us!

We've had around 16 medical appointments in the last 2 months, the vast majority for the younger two kids although my own recent curve ball has added to that as well.

Apart from my own medical testing with the cardiologist the paediatrician also decided that N's situation merited further investigation in the form of a gastroscopy and colonoscopy.
Gastroscope we've done before - for W once pre his Nissen Fundoplication and twice for T - once pre Nissen and once post Nissen while dealing with the mysterious 'gloopies'. So that part didn't concern me much. It's a general anaesthetic but only a short one so not a huge deal.
A colonoscope we've only had the pleasure of dealing with once before and for P. So I knew the prep was going to be a very large challenge with N anyway but my biggest concern was keeping him stable while not being allowed to drink any Ensure or Fortisip. When trying to get him to drink 2 litres of laxatives the last thing we needed was for him to get one of his puky/retchy cycles and lose whatever he'd drunk!
With very careful planning and management - lucozade and iceblocks at strategic intervals - we did get through it. It took a little bribery and corruption to get the laxatives into him but really, I don't blame him. I think you'd need to bribe me too!

He got through the GA fine as I knew he would. He was fine with it during his Nissen after all.
There were glitches with his care at the hospital but I've let them know that in their Evaluation form and was fine when I got him home that evening.

However it was the next day that we hit our SNAFU. Because, you know, life just can't be simple, especially for us.

The morning after he was in pain. It wasn't too bad so I wasn't too concerned. But he got progressively worse all morning and got to the point where even swallowing his Ensure hurt and he didn't want to drink anything. I already had a doctor's appointment for T so I rang and just changed the kid's name!
The doctor was concerned but recommended keeping on keeping on. I obviously didn't pick up some of the concern though because she actually called us at home that night to check on his status and stressed again that any change and get him seen again.

The pain worsened and worsened. He couldn't sleep that night even with pain relief. So we made the call to take him to the ED late that evening. P volunteered to take him in - so I accepted! 
Since he's been working from home he's well up with the play with the kids' health status and meds etc so that was easy. What wasn't easy was being the one at home waiting from info and not knowing what's happening at all!

The poor kid was finally admitted to a ward at 5:30am the next day. He ended up with two nights in hospital while we worked to get him stable enough and tolerating drinks properly.
The next big part of the SNAFU was the morning he was finally taken to a ward was W's birthday!


I have long had a rule (which I've posted about before) that we don't do hospital on anyone's birthday. Out patient or clinic appointments I can just about handle but NO ADMISSIONS at all, categorically, totally positively.

We nearly wound up booking surgery for T on his birthday once - just at an appointment not doing the actual surgery. P ran it very very close to the wind by having surgery the day before W's birthday one year. W broke an arm during his own birthday party but that was a few days before his actual birthday. But over the past 14 years no one's actually blown it - until this year!


Poor W was fantastic about it but it really was an awful birthday. Right from when he woke and was hurried round the house and unceremoniously dumped outside his grandparents' house with T so I could race off to the hospital to relieve P, through to a take-away dinner rather than his favourite dinner he'd especially picked. The phone calls to the house that day were all about N not him. He did have a couple of great birthday parties to make up for it but still it was absolutely NOT the way to feel special!


Continuing the SNAFU is the fact that no one can really explain why N's gut reacted so badly to the scopes. Even if you consider the fact that he has a fairly tight Nissen, so does T and he didn't have these issues following his scope. No one even suggested these issues could be a potential complication from a colonoscope, certainly P was back to normal the next day and that's what they tell you to expect.
Even now 2 and a bit weeks after the scopes he's far from his normal state and experiencing pain more often than he was before the scopes.


Throw into this SNAFU the factors that my BP still isn't properly controlled yet and we've had to scramble around to find T a new swim school as his old one got liquidated - yes, I know that swim schools and liquid go together and it does sound funny but the notification of that and resulting uncertainty around lessons, timing and if they were happening all coincided with the day of N's scopes!

Add in the factor that we're still struggling to find out W's enrollment status and what's actually expected of him and us and what's happening or likely to happen next year - but I had a report today that they feel he's settled well at Correspondence School, doing well, he's apparently lovely to teach and talk to on the phone (yeah I know that - I've taught him for years!) and they'd be happy to keep him and you just continue the SNAFU. Yes, we pushed for the right thing and he's happy, settled and excelling - but they could snatch it away at any moment.


And so you see that SNAFU is actually entirely appropriate for where we are right now!


On the bright side of the SNAFU ledger is the fact that T seems happier with the new swim school than he did at the last, N is feeling well enough to annoy everyone again and at least we know his gut really does need looking at in detail because they don't admit for two nights lightly, and W got yet another Excellence grade on his Latin work! He's been collecting Excellence and Well Done grades for most of the time.
And so we continue onwards.

The rhythm of life

The rhythm of life is a powerful beat...
 I've a pretty sobering experience in the last few weeks.
People talk about a health crisis changing their outlook, their view on life, bringing into perspective what's really important and so on but you don't understand it really.

A chance blood pressure reading done by the GP about 3-4 weeks ago discovered critically, dangerously high blood pressure - and scored me an instant script for medication, a load of blood tests and a trip to a cardiologist!

I know from experiences during my pregnancies that hypertension carries various risks to other organs and can be dangerous, needs to come down etc. I know how important your heart is - and kidneys etc.
But I didn't realise just how fast things can go wrong.

The GP also detected a heart murmur which hadn't been there previously and so there was some question of how my heart was actually functioning. A very scary proposition.

The first lot of medication not only gave me an irritating cough but left me struggling through a brain fog and absolutely exhausted. When I wasn't resting I simply wasn't functioning - losing count during mixing formula for the younger two, forgetting what I went into a room to do, putting items in stupid places.
P got more and more tired doing T's feeds as I needed every minute of sleep I could get - and he got more and more worried about me. The housework fell further and further out of control.
And the blood pressure didn't come down enough either!

The tests slowly came through - kidneys okay, liver okay, various other bits okay - yay no serious damage done according to the bloods.
Meanwhile I felt sick, had horrible headaches and contemplated what the future held.
All the medical people were stressing how important it was my blood pressure came down and I feared for my future - and that of the kids.
Was I going to be around as they grew up?
How old were they going to be before I wound up leaving them?
It's simply not fair! I want to be a grandmother - watch them succeed as adults, make all this hard, hard work now worth it.
I'd be lying if there weren't tears shed in quiet, solitary moments.

The next medication we tried didn't leave me washed out - but still control over the blood pressure wasn't good enough. I felt fine until I did something normal like wash the kitchen floor - and wound up with a headache. My ability to function, to do MY job was still badly impaired.

And so the last lot of testing happened yesterday and I saw a cardiologist.

It is extremely sobering just how close things came - and I'm not out of the woods by a long long chalk.
High blood pressure can cause changes in your heart. The walls can thicken, making it harder and harder to pump, it empties less efficiently and then you are well on the way to heart failure, valve issues and so on. Heart failure can result in a very shortened life span. Many only have 10-15 years from diagnosis.

Testing yesterday showed that I'm borderline to having thickened walls. If that blood pressure had stayed up much longer I'd be riding that downwards cascade.
I'm only 39.
My eldest is just about to turn 14, youngest only 7. In 10-15 years even my eldest would still be younger than I am now, the youngest barely in his 20's. So much for grandmotherhood and enjoying my adult kids.

And so now I'm on 2 different strong medications to force my blood pressure down as it was still way to high yesterday. While my cholesterol wasn't too bad, okayish for a 'normal' person - as the cardiologist said yesterday I'm not a normal person any more. So I have to take medication to get that down and keep it down too, trying dietary adaptions won't be quick enough or significant enough.
And yes, exercise and losing weight are important too.

While family history has a significant part to play in this mess the major cause of this is considered to be stress - long term, unrelenting stress over caring for the kids and all the challenges they face.
That's not something anyone can fix - and so I have to rely on the medication.

Hopefully my blood pressure will respond to this combination of medications - but it needs to do it quickly or the condition of my heart won't be borderline any more.

It is simply horrifying to think that this has blown up in the past year, that if I hadn't had that chance blood pressure reading I could be looking at a very limited life span now.
Hypertension is called the silent killer for very good reason. We all think about heart attack and stroke but it can do so much more. I still need to see my rheumatologist to see if my arthritis medication needs juggling around the cardiac meds, and probably get my eyes checked to be sure no damage has occurred there because I've had some quirky things happening there too for a little while that I thought I'd deal to some time. Now it needs looking at sooner rather than later.

This has been an incredibly scary time.
It still is really.
You do look at what's important, who and where are your friends when things like this happen.
Due to the constant contact nature of today's world it can be easy to flip a supportive message to someone without thinking about it too much. But what's been interesting, and heartening through this are the numbers from overseas who, yes can't do much, but have bothered to make contact and continue to ask after me, follow up on what happened at various appointments and so on. The few local friends who have done so are even more so significant and important.
I know I've been short tempered with some people through this - fear, splitting headaches and extreme fatigue will do that to you. But it's been interesting to see who has responded with an 'are you okay' message - and those who have simply carried on their merry way, in some cases even being more critical and finding fault with things I say - even when trying to support others but not succeeding too well.

I want to be here for a long time to come. I want to be here for my children - and their children.
I very nearly lost that opportunity recently - and it's still not going to be plain sailing for some time to come.
So life is going to have to have some changes round here - for the very few things I can try.
I knew that high blood pressure was dangerous but I didn't know how fast it can cause major major problems.
So people out there - go get yours checked. Do it for yourself, do it for your kids, your family.
Just do it! You may discover that your life actually hangs on it.