"I have a hard life don't I Mummy?"

And how do you respond to that?

Try to be positive and bracing - "No of course not dear, you're just fine." Blow nearly 5 1/2 years of painful experiences and struggles into insignificance?

Say "Yes, actually sweetheart, your life does suck." Risk the poor mes and developing a chip against the world and life in general?

When it comes from your 5 yr old who is currently hooked up to a feeding pump, complaining he hurts and is fresh from a surgical appointment where it is acknowledged something significant is wrong but no one can really figure it out, and where when he tells the surgeon that he wants to be a surgeon too when he grows up he's told that he'd make an extra good one with all he's been through in his life so far, WHAT DO YOU SAY?

I've always kept going thinking that at least the kids haven't needed surgery - um blown that one out of the water with 6 trips to theatre in 3 years
and that at least they don't have anything that's going to kill them - undernutrition and reflux had a damn good crack at it on T when he was 3 months old.

And now we're facing another impossible situation, two really.
There seem to be no answers for T's gloopies - mild inflammation, some eosinophils but not enough really to dx EE. Omeprazole doesn't help, cisapride didn't when we tried it earlier in this saga. Motility seems fine, peristaltic motion is fine.
We could tighten the nissen but there's no sign at all of it being too loose, he still can't vomit and surgeon doesn't want to anyway as it'd most likely make things worse.

The suspicion is that all his growth post op means that the button is tethering his stomach to one spot, the nissen is tethering it to another and so when it fills it can't move properly and that's causing the pain.

The answer to that - remove the button. But he's eating virtually nothing, we're struggling to maintain his weight as it is, he won't drink his formula and so is tube dependant right now. As the surgeon says that option's highly dangerous.
And it might not be the answer any way.

And so we're back at the point of having our backs against a wall. There's nowhere to go but something has to change.
I have a child who regularly cries in pain, wants to eat and just can't. When he does eat he winds up in so much pain that he won't eat much for a few days.
He spends at least an hour a day attached to a feeding pump and I'm spending at least that much time washing, cleaning and sterilizing feeding equipment.

And so we see a paed gastroenterologist on 3 Dec. She may or may not have any answers. Even if she does the surgeon has said they sometimes come out with way off beam ideas and if that's the case then he won't follow them - eg tighten the nissen.

I suggested that if the button is pinning his tummy in the wrong place can we reposition the button? So if the gastro can't come up with any useful insights then that's the next attempt. It may or may not work but it's a half way step between pulling it entirely and doing nothing - neither of which are really options.
But as the surgeon said we don't want to do anything which could make things worse.
God forbid that happen - it's already close to nightmare territory.

The other possibility is to treat him as though he does have EE and see if that helps. That'll be interesting since all his skin pricks (20 different items) all came out negative. To successfully treat EE you have to eliminate whatever he's allergic too. He's already dairy, soy, apple and strawberry free. We have no idea what could be further allergies. You also treat it with steroids - but you can't maintain any improvements or get significant improvements unless you eliminate the allergens.

And so we're back with our backs to the wall, a kid who is struggling along, clearly not right but with no answers.
And I have a kid who regularly complains of pain - "just ordinary sore Mummy, not really sore this time" or lies on the floor saying "I just can't handle this pain any more" and weeping his little heart out.

Yes T, I think you do have a hard life. It could be worse but it's still been a lot to manage and a lot more than most kids of 5 years old.

You do have to measure how long the journey is, to recognise all you have overcome to this point, to honour the experiences. That is what gives you the strength to go on - the propulsion to believe that it will come right, we just have to keep on plodding onwards. But there's no harm too in acknowledging it's hard either.
Some days it's bloody hard.


---------------------

And what's more fun than having your back against the wall with one kid?
Being in that position with two kids of course!

We're playing the same familiar, frustrating game with N that we did with T.
After having a game plan and both the surgeon and the paed saying yes, they were prepared to put a tube into N as something has to change - the surgeon says he doesn't want to and the paed doesn't want to either.

Can I tear my hair out NOW???

Anyone here think WE want to either?
Either of the docs got any magic wands to wave?
Anyone actually, seriously think that it's okay for a nearly 10 year old to be on a liquid diet only?
I love the surgeon's view that once N hits his teens he'll magically start to eat. I love the theory but I don't believe it for one second.

And so we are waiting to see a paed endocrinologist for N (a new speciality for us - yes there are a few we haven't delved into over 12 1/2 years!). That will apparently be before Christmas and we'll hear from the hospital in due course.
The surgeon doesn't even want to do any investigations until N's seen the endo.

He doesn't think that a tube will be the silver bullet we want it to be.
We've tried time - what else is there? Something has to change.

But in the meantime - I can do the limbo, the medical limbo that is - that's one dance I'm very skilled at by now.

Euphemistically parenting

There are many euphemisms you hear about parenting - parenting's not for the faint-hearted, not for wusses, not for sissies.
People talk about being in for the long haul, some parents say all knowingly "It's not a sprint, it's a marathon, you have to pace yourself".
Once you enter the NICU everyone will tell you it's a roller coaster ride.
People, myself included, talk about being back on the medical merry go round.

So if we're going to run with the imagery - I think that if 'ordinary' parenting (I know there's no such thing!) is a marathon then what I'm doing with my boys has to be an ultra marathon.

Ultra marathons are a longer distance and have different activities within them, not just running. They are designed to stretch you to your limits and be grueling. Of course like any of those things you train for them and there are parts you find easy or even enjoyable, the bits you are best at.

The easier, more relaxed down hill slope was nicely epitomised for me this week when I had T at the GP for his fortnightly weigh in. He was having a great day, charming, clever, slightly cheeky, joking around with the GP but impressing at the same time. He choked on some water and the doctor's comment was "Oh that went down the wrong way didn't it!" T's response "Yes, it went down into my lungs instead of my oesophagus into my tummy. But it's okay now because I've coughed it back up so it can go down the right tube now." A moment later he was discussing the odds of various cars getting out of the 'traffic jam' he'd carefully created in a path across the room with the doctor.

Yes, we were still in the grueling ultra marathon - he was being weighed because of all his issues at the moment and had managed to lose 250g in two weeks despite the late nights, the day feeds, the tasty tit bits for him to eat, the carefully concocted purees. But he was in a great mood and buzzing round doing what kids should be doing.

Another gentle slope came the next day at the hairdresser where he was picking out the letters of his name from the lettering on the window and actually writing them on a bit of paper for them. I didn't know he knew so many letters as his learning has been very slow due to the health problems this year, but there he was identifying and writing letters and even unphased when some of the letters in his name weren't on the wall, he just added them in with a little help.

But then we hit another uphill battle, a steep incline, an event which shows perhaps you hadn't done all the training you should have.

T has croup - we're in the middle of summer here so a little unexpected but not impossible.
It hit hard and fast.
He was indrawing badly with every breath the first night, he was whitey/blue/grey around the nose and mouth and very scared.
And so I was thrown back into the 'hospital or not' mode - I checked his lips, fingertips - all still pink so oxygen levels weren't too bad, his resp rate was 19 - 22 breaths a min once I'd managed to calm him down so not in too much distress.
As P's away I decided to watch and monitor instead of taking all 3 kids to the ED in the night!
And so I was up until 2am, counting resp rate, checking colour, listening to the croupy stridor in and out on every breath and checking how many auxilary muscles he was using to breathe.

I took him to the GP the next day, yes second time in one week and yes, the same person who had joked around with him 2 days earlier. And we walked out with a kid on steroids. Last night wasn't as bad as the first night but I was still up until 1am with him working hard to breathe, reassuring and monitoring him.
Today he's still huffing and puffing, this afternoon I wonder if he's taken a turn for the worse - retching after his feed, dribbling rather than swallowing and sleeping only on my lap propped right up.

And so the ultra marathon continues.

On Tuesday we see the surgeon for T and N and we need to give him a bit of a hurry up on sorting things for N. His eating is virtually non-existent again and he even got to the point recently of retching, headaches and feeling terrible due to lack of eating. We will also get T's biopsy results. If they show nothing then no one knows what's causing the 'gloopies' or how to fix them.
If they do show EE then we have to start treating it - and more importantly figuring out what's triggering it, esp since all his skin prick tests came out negative!

Life with my kids is definitely an ultra marathon - and sometimes I get the stitch and wish it could all slow down or stop. But it's those gentle inclines, those days like T had before he got sick, which help to carry you on through the long hard hauls.