"Barring Disaster" or life is what happens when you are making other plans

Life changes a lot after you have kids - we all know friends we lost contact with after our lives changed with the advent of kids and they didn't have any. But parenting on the sharp end is more like an extreme sport - and so the gaps are bigger.

I often reply to invitations with "Love to come - barring disaster" and I'm sure people think I'm just a total recluse.

Actually I'm sure many have given up trying to make contact at all.

But the simple fact is that baby sitting is hard to find/impossible, stuff keeps going wrong at the last minute and actually I'm often just plain tired.

I'm often afraid if I actually escaped the house I'd simply fall asleep at the table.
Some days the reciprocal nature of normal conversation is beyond me.
Others talk about schools, play dates, running from event to event with the kids while my mind is running over things like - if T had 170 ml in a morning feed but only drank 40 ml in the afternoon that means he needs x extra mls on top of his 650ml overnight, um when am I getting to bed again and how fast dare I run it so I can get to bed no later than 1am?
Not too scintillating I'm sure you'll agree!
And that's when my mind's not doing the horrible realisation I haven't washed out the feed containers today because I got side-tracked so I'll have a stack to do and probably need sterilizing now or calculating when the younger two last had a weigh-in and I'd better book them in soon and when do I need to call the chemist to organise repeats.

T had his Nissen Fundoplication and gastrostomy placement in Feb '09. Since then his needs have sky rocketed.

As a result P and I have great difficulty getting out together without the kids. In fact I can count the times on the fingers of one hand - there have only been 4. And that's including my trip on my own to England for my sister's wedding.

I saw a brilliant blog post a while back - she's a mother of a special needs medically fragile kid and while Thomas isn't anywhere as high needs as her daughter is he's definitely had his moments!


The bit that really spoke to me was this -" But as much as I love my dear friends, it is a huge effort to get out and do something with them. Even just the smallest of outings.  It involves much planning and scheduling. And it takes physical and mental effort and energy, and I really just don't have any to spare.  When I am presented with a choice of "I could go get a pedicure with a friend, or I could go to bed an hour early" - I fully admit that I will choose the latter almost every time.  Because even if I was not chronically sleep-deprived, when I get together with a friend, what is there to talk about? "

When I've had a week of 1 am bedtimes, juggling feeds and trips out to appointments, got N behaving like a twat during the day because he's not eating yet again and I had the choice of a night out or P doing the night feed for me and getting to bed early, ideally with the option of a sleep in in the morning - what am I going to choose?

"Oh, you'll feel so much better to get out and take a break" - not as much as I would after an early night!

"The world won't end if you aren't at home doing it all" - no but even P has difficulties on a regular basis getting T to let him hook him up for his feed and despite his best efforts he has other jobs to do so I get home to a trail of half done jobs which take a while to sort back out again.

I don't think I'm irreplaceable but more that often the work load I return to makes it feel like it's not worth the planning beforehand and the sort out afterwards.

But as the quote from the other blog said, it's the mental effort and energy too - and that is just being spent on getting through the day/night often.

When T came through his last surgery with a dramatic improvement I decided it was time to get a needs assessment done to see about respite time. It was a nice validation in a way because they said with the workload he incurs I qualify for 104 DAYS of carer respite time. That's at a time they are cutting back and that kind of allocation seems to be unheard of in special needs parent circles here.
Not like I can use it all - or find anyone to do the respite time for me - but it's nice to have the work recognised.
Our GP just the other day said she doesn't know how I do it all and she'd have checked herself into a institution long ago if it were her. The kids' paed has said that caring for these kids is more than a full time job and she has no idea how I do it and even a modicum of work.

I do it because they are my kids, because there is no other choice.

But the end result is pretty much chronic sleep deprivation which has lasted about 6 1/2 years now, endless paperwork, fights, tactical planning, appointments plus of course - just keeping the kids alive!

Having kids is tiring and busy.
So is running a household.
So is homeschooling.

But here's the reason why I'm so spent, why I'd love to come out with you, return your call, actually remember the things we were going to do - but just never get there.

I get up about 7am - not bad so far. Thankfully P's usually done some basic household chores by then because he gets up with T who wakes at some ungodly hour. We're still not sure when he wakes as he's always well and truly with it when he comes and stands beside P waiting for the alarm at 6am!

But by 9am I've spent -  35 minutes making up N's formula for the day and making him drink his first glassful;

 - 20 odd minutes washing up T's feed containers, syringes and tubing from the night before and making his formula for the day and measuring it out;

I've also refereed at least 2 fights in the 30 mins N's been up because it takes time for his ADHD meds to kick in and he can't be medicated 24 hours a day.

That's about an hour of my 2 hours awake done for. That's in addition to sorting washing, making sure the kids eat, tidying up after breakfast, feeding and dressing myself etc - all the normal stuff.

By 10am I've spent  - another 35 minutes supervising T's tube feed and quite possibly venting him at the end of the feed;

 - between 5 and 10 minutes cleaning and applying cream if needed to T's tube site;

 - another 15 mins cleaning feed containers, syringes and tubing again after the feed.

Venting usually means attaching an open syringe (a big plastic syringe but without the plunger, the pushy part, attached) to his extension tube and allowing air to come up and out of his tummy and relieving pressure. We didn't need to do that very often before but with the increased burping lately it makes him more comfortable.
If we have to do that then often a little stomach contents comes back up through the tubing and possibly into the syringe which has to be returned gently to his stomach and then all the equipment treated like it's been vomited on - as in effect it has been - and cleaned very carefully.

So that's about that whole hour between 9 and 10 gone.

In between I'm teaching the kids, sorting disagreements and trying to hang the washing without World War 7 billion breaking out because the kids are like any other self-respecting bunch of kids and if the teacher has left the room of course they'll do anything but their work!

Through the day at about 1 1/2 to 2 hourly intervals I spend about 30 mins trying to coax/remind/nag N into actually drinking a glassful of his formula. Sometimes he downs it without difficulty and it only takes a couple of minutes out of that 2 hour window. Other times, like today he drops it.
That results in an extensive dry up, stain management, spray the floor and spray with a different spray once it's dried effort. Milk based drinks in wool carpets are not a good mix.

These days I spend about 30 minutes in the afternoon luring T into drinking some formula in the afternoon.
It may sound like a long time but you have to remember that his morning feed plus clean-up takes at least 45 minutes so by getting him to drink it instead of tubing it I am winning on this one plus it's just another step closer to tube-free life.

Over the day I probably spend about 3 hours just getting N to drink his formula - never mind eat anything.

You'd think that at least the kids are old enough that bedtime would be simpler...

T needs help drying round his tube site after a shower in the evening and checking if he needs any cream, either for granulation (extra skin growth which leads to a bit of an ooze and so what we call 'the crusties') or for early signs of infection which is often caused by the moisture/ooze caused by the granulation.
So that accounts for another 5 minutes - usually around the build up to dinner time so thankfully now P works from home he pops up, deals to that and goes back to 'work'.

The med round the kids require before bed also takes time.
By the time you've warmed the feed, flushed the tube and hooked T up to his night feed, mixed N's med for constipation (caused by his lack of solid food and shonky diet) with juice and given him his night medicine there goes another 20 mins.

That's in addition to night chats, sorting beds, tucking them in and all the normal stuff that everyone else does.

Of course I do try to do the housework, cook the meals, bake for the family including allergen-friendly foods for T and all that normal stuff.
The older two do music lessons as well, W has soccer in season and the older two but now it's the younger two have swimming lessons so I do have a stint as a 'mum-bus' as well.

N's meds wear off coming up to 12 noon and again coming up to 3pm so in the gap of them wearing off and the next dose kicking in he does need watching more carefully - he comes up with the most hair-brained schemes anyway but when he's hyperactive and impulsive you just never know what's going to happen. If he's not eating then he has a hair-trigger temper too and certainly doesn't think through the consequences of shoving a sibling even if they are close to a ranch slider...
As I say he can't be medicated 24 hours a day...

But my day doesn't stop there.

My night stretches on and on -
If T's eaten a good meal and feeling very full then his feed start may be a little delayed or run more slowly,
If we've been out somewhere and so his feed starts late,
If things are running behind that evening and so he's late for bed,
If he hasn't drunk so much formula over the afternoon - these are all reasons why my night could easily shift from a 12:30am bedtime to a 1am bedtime.

Depending on how hard the day has been with 'persuading' N to drink or how well he's been eating and so behaving I can find it hard to sleep anyway when I do finally tumble into bed.
Even if I get to bed by 12:30 it's often 1 am before I actually sleep. If getting to bed is 1am then it might be a bit quicker to sleep but that varies.

And so I finally get to rest and it seems all too soon that T arrives by my bedside (if I'm lucky enough to sleep that long) at 7am to tell me "It's up time Mummy!"

Some days, especially in winter, when I draw the curtains round the house to keep the warmth in, the pull of a bed in the semi-gloom is almost irresistible.
There are days when my eyes feel gritty because I'm tired - by about lunchtime.
By Friday I'm almost certainly in that state.

All of us who are parents remember that awful state of sleep deprivation with a newborn where you find you are unloading the dishwasher and putting the clean dishes in the fridge, when you drive somewhere and you only vaguely remember the trip, when you are sure you are actually micro-napping and missed something a kid said only, that's okay because if it's N he'll tell you another 10 times anyway.

I hang out for my Friday nights when P often does T's feed for me and whenever possible childwrangles on Sat morning so I get to sleep in. Some days that's even 9am!
Often but not always P does one of T's feed mid week for me too but that depends on rehearsal schedules and general tiredness of us both. There's no point in us both being zombies - and he has to earn the money!

So if I forget to return your call, find I'm just too tired to go out, have some disaster befall us, don't quite get to Facebook/email that day or week (because in the fog I've forgotten I even needed to send the email until I'm dropping off around 1am!) then it's not personal.
Heck I've been meaning to call T's Community nurse about a spare feeding tube for the past month!
Email actually works for me as does the internet.

It's my lifeline to the rest of the world and it's waiting whatever hour of the day or night.

But whatever happens, please don't give up on me totally.
Please don't stop inviting me to things.
It does help to know there are people out there, with other lives and in another world I look at and hope to re-join someday.

But do bear with me - this has to improve some day!

And so, I will post this and go and do some of those jobs which don't get done during the daylight hours as I have a good hour at least before bed tonight - T was full of air after a good dinner...

Fight the Good Fight

It's been a while, quite a while since I last posted and in part that's because I kept hoping to have good news to post.
However, as typical round here things are never as they seem and in the end things are either not resolved to any conclusion - good or otherwise, or wind up in a bigger mess than ever before!

There's a lot going on for W - stuff I can't get into here and now because there are a lot of things to evolve first but needless to say it's going to be a David and Goliath fight but one David is going to win.

We're going to win for a couple of reasons - 1 - because the relevant government sector has dropped the ball so incredibly badly that there is no way the decision made can stand on the current basis (and now we have a much better idea of exactly what they are looking for we can re-write the information in such a way as to tick all their boxes!) but - 2 - because it's our child we're fighting for and his future. There is no greater incentive, no greater investment, no greater motivation.
I will not and can not just throw away everything we've strived for over the years - or allow anyone else to do that.
But it's been really intense and emotional and required a huge amount of head down research, emails, planning and the occasional meeting.

I can't remember if I've written about N and where he's at lately but things are going from difficult to messy with him too.
We realised last year that he needs transition time from being homeschooled before he goes to a secondary school - that will happen at the start of 2014 so we don't really have that long to sort ourselves out.
However we also realised that needing to drink between 1.5 Litres to 2 Litres of liquid a day really isn't compatible with school. Especially when he needs it reasonably cool and it's Ensure (a reconstituted powder mixed with water).
The paed agreed that his liquid intake and school wasn't going to work and we'd already tried mixing the Ensure with milk to boost the calories and decrease the volumes to no avail - try constipation to the point of a bleeding anal fissure for size.

So we tried to halve the volumes and limit it to out of school hours. While that was a sheer and unmitigated failure with 3 of the hardest weeks I have experienced in a very long time it did show us very clearly a few things - that he needs the regular 'doses' of calorie intake or his behaviour and school work deteriorate beyond all comprehension, that he really really needs all those calories as he lost 1.5kg in 3 weeks and didn't increase his eating to compensate, and the fights we had over getting only 750 ml in outside school hours was an impossible task and meant his stomach was so overloaded he absolutely wouldn't eat.

The day we met with the paed and all declared the experiment an abject failure and she agreed school was looking nigh on impossible unless we juggled something was also the day we got told by the relevant govt agency they had declined W for what were incorrect (and things we had never stated) reasons.

To say there were tears shed would be understatement.

It felt like the world was caving in and that we had totally lost the battle for both the boys.

Just as I was picking myself up a little from all of that it was time for the younger two's monthly weigh-in and I discovered that T hadn't gained in nearly 3 months and the GP wanted his feeds INCREASED.
I'd just nutted out a plan to get him free of day feeds by Christmas and was looking forward greatly to freedom from the tyranny of watching the clock, remembering when best to hook him up to keep energy levels up nut not compromise any chances of a decent meal, cleaning tubing, feed containers etc. Never mind the fact that once we jump the day feed hurdle any decreases then come off the night feed which means I get to actually sleep.

And so, devastated once again, I did as I was told and increased his feeds. She'd said to do it even just for 2 weeks. So, because I was so desperately keen to get him back on track (and very mindful of the fact we had a dietitian appointment in about a month and she'd be on my back about not decreasing) I took him back after only 2 weeks.

SUCCESS! A 500g gain in two weeks. That wasn't just because of an extra 50ml of formula a day. It was because I was concentrating and making sure I offered food whenever he seems to possibly be interested.
It was because I wasn't struggling with a tearful, tantrum-throwing, headachy, calorie-deficit stricken N.
An N who really couldn't be left unattended for long.
An N who left himself and us all drained and completely spent by the end of the day.
An N who had the whole family treading on egg-shells in fear of provoking the next melt down which would either result in screaming, swearing and crying for the next 30 mins or a violent attack launched on someone and then followed by the screaming, swearing and crying for the next 30 mins.

I felt dreadful. By focusing closely on one kid another had suffered. I was juggling and had dropped a ball - significantly.
I know all parents juggle all the time, that one kid requires an intense focus for a while and another has to take the back seat. But in this case the juggling act is such high stakes that you can't afford to juggle and drop.
At least it wasn't quite as bad as the last big push on N's eating when T managed to lose 500g!

Add to this he sneaking, fearful suspicion that T's dreaded 'gloopies' may be re-appearing.
Complaints of sore tummies, feeling full fast and lots of burping just add to the sense of urgency to get him off the tube. I never want to see him in as much pain as he was back then.
I also don't know how often you can re-site a tube - or how often our surgeon would be prepared to do it!
How many holes can you poke in a stomach anyway?

At the moment he seems in reasonable spirits although fear clutched it's cold hand around my heart about a week ago when he was so uncomfortable during his feed he started retching.
Night feeds don't appear to be causing problems - probably because they are run a little slower but also because he's asleep and so less aware of how he's feeling.

But in light of this we're now working to get T to drink some of his formula orally.
In life BG (Before Gloopies) he was drinking around 200 mls a day and not having day feeds. The ay feeds only started because of volumes, calorie deficits during the day and lack of solid food and later puree only restrictions.
So we're slowly cranking that back up again and he's been drinking some Neocate each afternoon for the past week. We're now up to 130 mls!
So keep your fingers crossed for a weight gain this month and so we can decrease the the tubed volumes which are currently cruising at 170mls - yes that's right down to ONE  day feed!
In this process I'm hoping to get the oral volumes to 200 mls and once the day tube feed gets below 150 mls we'll chuck the extra into his night feed. So I'll be up for some horribly long nights again but hopefully only for a couple of months and then we're back onto the tube-free life expectation track!
That's all assuming the gloopies don't de-rail it with their evil presence. It was about a year from first tube placement before they started off, this time it's only 6 months since the re-siting operation. The whole prospect terrifies me to be absolutely honest and just makes me want to sit and cry.

So if I've been 'absent', quiet, short-tempered and grumpy, anti-social and generally a crap friend and missed events etc then I'm sorry but now you know why!

The constant juggle turned out to be performed with live grenades and ended in the inevitable fashion.
Darling N pointed out today "Your hair is going grey Mummy"
Yes darling there's no wonder - and actually it's going white - totally skipping the grey.
I must have dropped that ball somewhere too.