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The journey so far.........

11/29/2014

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From the title some might be lead to believe I'm about to write about Lord of the rings, The Hobbit or some other fantasy novel/film. Though this tail is not one of fire breathing dragons nor danger and evil but of one that in it own right is just as epic!

This is the journey of the last 5 years......

When we started out we knew not of what lay ahead of us nor did we know how it would lead us to be brave and strong, to be able to fight for what was right and deserving and to be able to teach us how to be true to ourself.
 You see, today is Ollie's 5th Birthday! 5 years we have travelled through the unknown, not knowing where the next bend in the road would take us, not knowing if we will ever get to the top of this enormous mountain we are climbing. 
What we do know is that over the past 5 years, this tiny baby who came into the world is a force to be reckoned with! He is strong and courageous and has taken on battles that most of us would cower at first sight of. Everything that is thrown at him is taken on with a smile. He has taught is how to focus on the positives rather hat dwell on things that are not in our control.
He has taught me that although we are not religious it dosent hurt to say a little pray 



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72hrs of hell

11/17/2014

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Were do i start?! The past 72hrs with Ollie have been a living nightmare.
Within hours of my last Blog Friday evening Ollie was taken into hospital by his dad.
He seemed to have perked up a little and my first thought was that we are probably going to waste there precious time.

After an phone update from Matt we were all prepared for a very long evening of waiting. How wrong could we have all been.

Ollie was called into triage within 5 mins of arriving then promptly taken to assessment were he was then rushed into resus! 
Ollie was indeed very poorly.
Unable  to maintain his oxygen saturation and struggling to breath Ollie was given a nebuliser and placed on Oxygen.
After then assessment  it turns out Ollie didn't have tonsillitis but an ear infection as well as a chest infection!
 It was indeed a scary times!
At just gone 1am a good friend of mine offered to give me a lift to the hospital so i could stay over with Ollie. She was also having the girls too so that was one less weight of worry.

When i arrived i could see Ollie was on good form but really struggling to breath, He has been made hyperactive but the drugs they had given him so it was continuous non stop talking! 
Ollie was taken to the ward just after 3 where they tried to see if he would tolerate some low flow o2 after around 10 mins it wasobvious he could and remained on 4lts of O2 for the next 24 hours.

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Early Sunday morning they tried him off the O2 again, he copped for 10 mins before they had to hook him back up.

Ollie had had a nose bleed during the night so was desperate for a bath and clean bedding so this was a good time to give time off the O2 a go again.
I think Ollie enjoyed the bath as he actually laid down in it! Something he has never done before.......
He managed well in the bath with out the O2 so once cleaned dried and fresh PJ's on we made our way to the place room for some well earned fun!

Ollie pretty much carried on the rest of the day coping fairly well with out the Oxygen and actually complained to the nurse that he wanted to come home! That my boy!

That afternoon the nurse came and told me they have to make sure Ollie maintains his oxygen levels as he sleeps so in order for him to go home he needs to nap!!

So yea i need to get a medically induced hyperactive child to have a nap.... Baring in mind he hasn't napped for months now!

Challenge accepted!
Unfortunately a challenge was exactly what it was and Ollie was very non compliant! The nurse has pretty much closed the ward of 4 beds down closed all the curtains, lights down etc........ Nope just wasn't happening.

By tea time he still hadn't given in so i pretty much resolved to the fact we are staying another night.

Daddy came to visit at 6:30 and with in 15 mins of him being there BAM! Ollie is asleep! 

Obs done and he was given the all clear, we just had to wait for the doctor to give the final ok..................The wait was long!

9:30 pm the Doc finally came and gave us the ok to go home but that wasn't the end of it
Ollie decided that whilst the doc checked him over as he slept that he would stop breathing..............Ok to some this may sound very dramatic but to us its something we have lived with for nearly 5 years.
Concerned the doctor asks how often this happens, with a chuckle i tell he not to worry it happens all the time......No one has ever been concerned when we have mentioned it before so we figured it was nothing to worry about.
Ollie now has a sleep study book.
We have also been given 24hour Open access to the children's ward again which means no more waiting in GP's not more waiting in A&E, which is FAB!




Today Ollie has been as high as a kite due to the amount of medication he is on but has recovered fantastically which means he could be back in school as early as Wednesday.


On a personal note i would like to thank those from the bottom of my heart  for the help and support you have given us over the past few days.


It means a great deal.

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Here we go again!

11/14/2014

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So despite Ollie being on antibiotics for the past 2 weeks he is really quite poorly again!
Chest infection and Tonsillitis! what's worrying is the fact his breathing is quite laboured at times and he is requiring his inhalers more and more to little effect.
Tonight we are on 'watch and wait' duty and hope we can make it through without any midnight outings 

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The realisation

11/6/2014

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When you start an epic journey such as Ollie you never know which way it will go, what paths you will take nor where you will end up. 
Its a minefield of uncertainties and a whirlwind of emotions.

I very rarely write about  how this journey make me feel. My emotional state is usually closely guarded, even to those close to me. I know it isn't a good nor healthy thing to keep these emotions to myself but it is the only way i know

As Ollie's birthday approaches  these emotion still fell quite raw inside me. It is almost 5 years to the day that it all started to go wrong and i still sit and think about all the 'What ifs'. I know i should but those who have shared similar journeys will know how hard it is not to think about it,
I personally believe there very little in the way of support for families after such events.  The fact that life could have been extremely different. The fact that i was very close to not being here,  The thought of my children being without a mother my husband without a wife. Its these thoughts and emotions i lock away and rarely write or talk about.

I know now these are agencies out there who are able to offer the support families need but for me i feel too much time has passed to enable me to open up fully. This is actually one of the reasons i started this blog. Although it isn't about my life it does help me an enormous amount.

But there is always something that bring you crashing back down with a thump.
Since receiving the verbal result of Ollie's scan we have received the written copy. I don't think anything in the world really prepares you for what is written in black and white. Although we are thankful that it is nothing more that cerebral palsy we are dealing with and not a motor neuron issues when reading the words 'developing' rather than 'developed' when written in conjunction with the words 'damage to the brain'. When the words 'Still Evolving' are used to describe the CP and that 'the CP is secondary to the developing damage'
When you also in the same week receive the result of the OT assessment and realise that things are so much worse than you originally thought

Yes we also received that......

We always though that Ollie was only slightly behind with his development aside from physical development that is.
But how very wrong were we.
What these people see is a child with sever development delay with some quite significant sensory processing problems who will require an enormous amount of life long support. 

It is becoming very obvious that as Ollie gets older his issues and disabilities will affect him a lot more than they are doing now and this in itself is extremely scary.

As a good and dear friend once quoted
 " We don't know what the future hold but we know who holds our future" 






 
 
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