Looby and Holly Bobbins last October

I find sometimes that life has the ability to throw lemons at any unexpected moment and as it stands currently you could say we're feeling a bit, well, err, lemony!

Quicker than I could say to Looby "you're off the antibiotics would you like to celebrate with an adventure" she was once again back in hospital hooked up to 6 hourly antibiotics by IV on a Children's ward in the wonderful Great North Childrens Hospital.  These bugs from the orbital cellulitis will not die it seems and we have no choice but to throw every antibiotic that every existed at the infection in the hope she'll beat it.  It seems insane to me that she hadn't even been off them for 36 hours when she spiked a temperature of 39.3c and we headed back (where upon arriving she promptly threw up).  We are in good spirits although slightly (very much) bored beyond belief.  We count our blessings though when we see some of the tiny babies in the other rooms who seem so poorly.  At least Looby can verbalise what's wrong with her which aids in the diagnosis and treatment.  How bad it must be as a parent to not know what's wrong with a baby who cannot tell you why they're in such pain or suffering.

This week that past had mainly been a good one, life at a relaxed pace, you have no other choice but to slow down when you are in our current situation.

Today and yesterday I escaped the hospital for spring mini sessions in Jesmond Dene and the joy of smelling the air as you leave the hospital is like nectar for the soul, when we were in hospital 2 weeks ago I noticed then that hospital air doesn't smell of anything and even if there is a smell of food it's the same smell, the sterile air kills the uninhibited joy of smelling the spring air.

I've chosen to keep working through this period because I have to, because if I stop and we become financially unstable our whole family life would fall apart and I've worked so hard for that not to happen that I never want to go back to the point where I have to worry about every single small payment I need to make.  Looby always has people who are eager to spend time with her for an hour or two and that's what I do, I work in little bursts, an hour here, a couple of hours there, it's good for my own soul to get out for a little while, to do something fun and something which isn't about Cannulas and names of drugs ending in "Illin".

When your child is ill your whole world stops, you press a large pause button on the world, when you are self employed and a single parent though you just can't do that, you have to juggle, some days it's six or seven balls all falling to the ground at the same time, but still you have to catch them.  I am lucky, I have a great support network of wonderful friends and Paul is here with Looby every day and when he's not here he's got Holly Bobbins who must be wondering what on earth is going on, why do Mama and Looby keep disappearing, at least I know she's having a good time when she's with Paul and her best friend Petunia the Husky.

The week we are about to enter into is an unknown quantity, of course we'll do whatever the doctors decide but our hopes are that they will swap to oral antibiotics and we'll be able to go home, I have work planned for a couple of hours on Wednesday, Friday, Saturday and Monday and there are a couple of sessions still available on Friday and Monday.  Whatever happens Looby will spend time with people she loves and I'll continue to support us and be with her as often as possible, on Sunday we're having a friendship Easter Sunday, another open house for lovely people who want to celebrate Easter with us and today I am grateful for friends who help me take those life lemons and turn them into big lemon meringues!


EDIT - Update on Tuesday 22nd March -

So, it's Tuesday now and we've actually moved hospitals over to the Freeman Hospital which is in the East of Newcastle (for anyone not from the area) it's actually about the same distance from home as the RVI where we were until we were transferred yesterday.

Looby is due to have surgery again, another op, this one will drain the sinuses and wash them out completely, not just one side but the whole side and the cheeks, it's amazing that they will just go in through the nose this time, no more scars, for that we are so thankful.

We thought it might happen today but Mr Carey, our surgeon who did the original surgery wants to do this surgery too and his list isn't until tomorrow so another long day in hospital ensues.  Looby spiked a temperature again last night so we are definitely in the right place and taking the right course of action, she's already on 2 types of IV antibiotics so if you have a fever when you are on the heady mix she's on then you know there's something seriously wrong.

The Freeman hospital was a new hospital in 1977, when you walk through the doors you quickly realise that you have returned to 1983, rigid visiting hours, bays of beds, no parents beds (I slept in a hospital bed opposite Looby in the bay last night), I've heard the food is award winning though and once I have someone to come sit with my beautiful girl I shall nip off to eat.  We are so thankful for the thoughts and words and support of everyone we know, and some we don't know too.  Each day we have been surprised by cards and packages, many of which are simply addressed to "Looby, queen of the unicorns".  Those things, they keep us sane, they make her smile and so that makes me happy.

Upon hearing about more surgery I really did have a slight breakdown yesterday, my random bursting into tears is still sitting in my throat along with my heart.  Having an ill child is one of the most stressful things you can ever go through as a parent.

We are thankful though, thankful that I am self employed and can be with Looby as much as she needs me, thankful for her dad being also self employed so we can juggle the many balls between us with kids and dogs and jobs and life and we are thankful that this isn't forever, so many parents go through this and worse and for some it's endless with no good outcome, to those parents I want to give you my whole heart and a cyber hug from the north, you are all amazing.

When your child in in hospital, why I support the junior doctors strike.

There's nothing worse than when your children are poorly, as a parent there's only so much you can do until you yourself feels completely useless and when your child ends up in hospital it's a million times worse.

I was speaking to a friend of mine who actually took part in the fight for parents to be able to stay with their children in hospital, for that I am truly thankful.

You all know Looby is a bright,bouncy unicorn even if we occasionally have tween angst.  I can tell you that seeing the light vanish from her has been the scariest thing.  For anyone who has t been following my updates Looby is currently in the RVI with orbital cellulitis.  On Sunday she had an operation to scrape her sinuses and surgeons also drilled a hole in her forehead to put a drain in.  Since Friday we have been in an eternal cycle of pain, morphine, tests, CT scans, more tests and still today we are here with her sleeping better but still waking up crying with pain until morphine has been administered.

It's all been very concerning but the doctors and nurses are amazing, the level of care is incredible and we are so lucky that we still have the NHS, can you imagine having 3 CT scans in 2 days if you were in the USA, the costs would be prohibitive.  

Our NHS is a wonderful, beautiful British institution, free healthcare for all, no matter what age, status or circumstance.  When Looby needed an operation on Sunday it was a combination of a 2 consultants and a senior registrar who performed the surgery.  We have seen consultants every single day and yesterday we saw the very top eye doctor in the whole of the hospital (she's lovely) and they're monitoring her eye sight so closely as she's got some problems from the infection.

Today as the junior doctors strike happens I'd like to throw my hat in to say I support the junior doctors strike.  The doctors, all of the doctors work under the most immense stress and pressure making life or death decisions, I can't even imagine how that feels.  Yesterday even though our consultant had a day off he still consulted from home about loobys care.  I don't think it's possible to feel more cared for.  The nurses are just incredible, there for the parents as much as the children, that hug I received just after I kissed  and said goodbye to my poorly child as she slipped under the anaesthetic was the most needed hug I've ever had.

Quite wrongly the NHS is not today run by doctors but by politicians and beurocrats.  The decline of the NHS is wholly upon their heads, not the nurses and doctors who love their jobs so much, those who always give more than is asked.