Just so tired...

Well and here we are again.
I remain convinced that if my life was written into a soap opera plot the writers would be told that it couldn't possibly be screened as it's simply too unbelievable!

My family and I must have truly annoyed some cosmic being this year - death and disaster have flooded in in the last few months.
On top of P's grandfather dying in July in a traffic crash we now have my uncle rapidly approaching death. In the same week he has been deteriorating rapidly we have had the paradoxical situation of the boys finally getting cousins - W is 12 so it's been a long time in coming!
But it's paradoxical in that the twins are very very small, very premature and even though they are now 2 days old and doing surprisingly well their survival will remain in doubt for some time to come.

I've found witnessing the dramas and emotions of a premature birth from the side lines very difficult. It's brought up a huge number of emotions for me and, knowing what I do about the path ahead for my sister in law and brother in law, and their girls, I wish with all my heart I could protect them, stop this in it's tracks, somehow shield them from all I know is heading their way.
There is so much joy in the babies' arrival, and yet so much sadness in the future and even their current circumstances. They too will be running an ultra marathon, after they step off the roller coaster of the NICU.

But whatever support I can give them, help as they learn to parent in the parallel universe of the NICU, support as the shoes drop later, encouragement to get involved with Early Intervention BEFORE they drop too far behind, friendship in the different parenting life they will be leading - anything I can offer and give in some small way makes our own path more meaningful, have slightly more point.

Just to add to the fun we have had problems with leaking pipes at home over the past month or so and today one of the mends burst! That's drama enough for any household but with T's daytime tube feeds we have to have water and so has made life more challenging on 3 separate occasions so far.

I discovered a pile of photos in my clearing up last night, some of the boys with P's grandfather, some from this time last year, T's birthday and slightly more current. I was saddened reviewing the photos of P's grandfather but shocked by the clear deterioration in T. He has become so much thinner in the face and you can see tiredness and pain in his eyes that had been such a permanent fixture until after his surgery. Typically the discovery of the photos has coincided with about 3 days of significant pain for T. He has regularly been crying inconsolably and at the slightest provocation. When I ask him what's wrong you alternately get the answer "I don't know!" or "I just hurt all over!"
To say it's heartbreaking is an understatement.

I did have a call from his surgeon today to explain some confusion over an appointment he'd said would happen before Christmas and now won't be able to happen until Feb next year. However he has discussed his case with the gastroenterologist and they have come up with a couple of drugs to try over the Christmas/New Year period. He has also said when he calls to tell me which drug we'll try he will also organise to book T in for an operation to move his feeding tube to a new site in the hopes that might relief some of the pain. This was an idea I'd floated at the last appointment and he was considering - so obviously he's decided that it makes sense.

I'm pleased he's taking action and that there are a few things we can try but my heart sinks at the prospect of more surgery for T. This will be his 4th general anaesthetic in the space of 2 years or there abouts. It will also be my 7th time to take a kid to theatre in 3 and a half years.
But it's all better than the other reality niggling away at all of us - if nothing works then no one has any answers and the probability is that T may be left unable to eat solid food without extreme pain for the rest of his life.

There is also the prospect of N finally getting some help for his eating if we succeed in our final push to persuade the surgeon back into placing a tube for him too. That will be yet another surgery - not a gleeful prospect.
We saw an endocrinologist for N yesterday - a very thorough appointment which took over an hour - and they were running 40 mins late too!
N has had some bloods and an x-ray for bone age done but no one expects any problems with those. The endocrinologist did say, in contemplating our predicament with N, that in his view placing a gastrostomy would be a 'reasonable step to take.'
He did say he would write to the surgeon with his findings and include that opinion and so hopefully that combined with a detailed but clear letter I have written and a letter from W's therapist about what she has noticed in N's behaviour when he does and doesn't eat - we may be able to persuade him back into the surgery.

But I am tired, tired of the stresses of the behaviours, the crying, watching my child in pain.

I'm tired of guiding the children through life and death situations all the while processing it myself.

I'm tired of the appointments, the record keeping, lugging the file I keep on each child to the appointments.

I'm tired of no real answers to the problems.

I'm tired of being a nurse to the kids, being a therapist to the kids, of doling out the meds, doing the cleaning, sterilizing, washing, of doing the research and careful thinking to work with the doctors and specialists.

I'm tired of worrying about the money, the added costs of formulas, specially cooked and pureed food esp for T, the supply of dvds for him to make his feeds a little more bearable.

I'm tired of the chronic, no end in sight, lack of sleep.

I'm tired of the deep, inground worry for their futures, where they are headed and what and how right the next step is medically, socially, developmentally, emotionally.

I watch other parents and while, I'm sure they worry about their kids and have concerns for them - I just wish, just for a short while I could have their lives, where their kid's biggest worry is what's in their lunchbox for lunch, if their friend will be at school today, if they've actually learnt their spelling words.
When they don't have the GP on speed dial, their calendar is full of play dates not hospital appointments and the supermarket shop doesn't include a trip to the chemist next door to get the month's worth of formula, high cal feeds and gauze.
I'm sure juggling a normal household isn't a walk in the park, and I'm sure if I got to do that then I'd very rapidly complain about the small details too - but from the outside, looking in, it just looks so much simpler.