And then there was 4 - Mateauz journey with Cerabal palsey

Day one of D day
Iw ont forget the time we reached the hospital...3.23am. I have this thing with remembering numbers...stupid I know but its something to hang onto when everything else in your mind it going 100 miles a minute. We were rushed through to emergency were I stood rooted to the spot, repeating over to the staff what I had told the ambulance and the nurse on call. Within 5 mins my little man had so many wires hanging off him that I didnt even reacognise the baby beneath them. More blood tests..more crying...more seizures and 4 very worried looking nurses and one student Doctor who had no idea and no-one to ask info to other then ringing the Royal Childrens in Melbourne.

TO keep any nomailty about the situation all I kept thinking about was if I had bought enough of our MCN's along..silly I know but I didnt feel with it. I'd had bugger all sleep...I was over worried...my bb's were starting to get extremely full and my little guy was getting worse. One of the nurses was Tanya's sister (yep tanya from here :) ) and it was so good to see a familiar face. I was so scared witless..I couldnt even cry. I had nothing. I was putting all my energy into trying to stay positive..its my copying mechanism...never show your upset...stay happy.

Mateauz was put straight onto anti seizure drugs which calmed them down and dont even ask me how many other things...I honestly gave up trying to remember. The pictures and memories of his time in emergency is of this small little baby....armas and legs flopped out, jerking about on this huge bed. There was so much talking going on and question after question..I started to feel like a broken record.

Tanya's sister must have noticed that I was almost over it...and asked if I wanted to go and express...defently so midwifery was notified of me coming and looks of concern were shoot my way as they remembered me and Mateauz from only 3 weeks prior.

I was sent into a little room were I expressed in darkness....I didnt want any light..more afraid people could see the sadness and pain in my face I suppose. The moments away from him were only 10 minutes but they felt like hours.

By 6am Mateauz was back in SCN here in Shepparton...waiting for the Pead on duty to make an appearance for the day. I left expressed milk for the midwife who was wonderful and went home to get a change of clothes.

It was when I rang Sammi that I lost it. I dont know if its cause it was my best friend that I was taking to that let me take down my guard. I felt so bad about ringing that time of morning and especially with that type of news but I couldn't keep anything from the girl, especially this. I owe so much to her....she means so much to mean...more then she will ever know.

My brother picked me up and ditched work for the day. Told me to ring when I need him....little did Iknow it would be only a few hours later that I would.

I cant remember how I got back to the hospital..some things are stilla bit of a blur. I walked in to find the Pead there who I yet again had to explain the night befores avents.

Lets do a lumbar puncture he says...Mum you can hold your sons legs

I cant type my reply but lets just say I left the room and sat in the lounge right next door were I heard my son scream in pain as the doctor didn't even close the door. I was told that Mateauz needed to go to the Royal Childrens as they were unsure of why he was seizuring and only they had the technology and resources to help him. A plane was organised for him to get down there but I had to find my own way.
In steps my darling brother who tossed me in the car and talked about anything and everything all the way down there. All I could do was sit there and look out the window, searching for the plane in the sky that was carrying my most important treasure. I wasnt taking anything in...I felt like I was living but not there....like when your really drunk and everything is a blur..people are talking, you can hear them, see their faces, expressions but you just cant react, talk back ect.

We were told to be at the Mercy by 1pm. We arrived and were told that Mateauz had only left Shepparton at that time as he had had more seizures. I thankfully had taken my electric expresser and expressed in the waiting room. By this stage I didnt care who saw my norks..i was over over tired. My Sister inlaws (yes 3 of them) all nurses stayed with me and listened to what the doc's had to say. They were fantastic and helped me with so much.

Mateauz arrived and he was put into quarantine as they told me they suspected he had mengi****iles and was a high risk of infecting others. The nursing staff at the Mercy were truely wonderful. The took him out and gave him to me and told me to hold him for as long as i wanted..feed him and change his bum. They let me feel like his mum...my circle was hole again.

In the 5 hours we were at the Mercy an MRI was done which had detected many small blood clots and one major clot in the main artery to his brain. The seizures had already caused damage to some parts of his brain as they were already dead.

Permant - unfixable brain damage...NOOOOOOOOO. I hated everyone then.
Even now writing this that feeling is in me...that lump in my throat, the anger.
What if I had screamed more when I was pg....what if I had gone higher up..what if, what if, what if!

I couldnt keep thinking about it...I had to think about the now and tomorrow.

I had already noticed that Mateauz had a preference to his right side......his left hand side was weaker and when he was feeding his tounge seemed to interfer and prod out more then before. His face was also slightly droppy on the left hand side.

We can fix this I kept telling myself.....wait until we get home...we can fix this

I had to keep telling myself this..I already had one child with a disability..**** I was now going to have 2...how the hell was I going to cope...find a happy place...find a happy place. I had to keep telling myself it was ok...Mateauz was alive and he was still little so we didnt know the extent of the brain damage.

at 8.30 that night we were transferred to the Royal Childrens which served to be our 'home' for the next 3 weeks...............

Oh hon thank you so much for writing this, it's incredible to be reading your story - you are amazing x

Maz, no words just this :hug:

Maz - thank you for sharing the story of your much-loved son. what a mother you are!!!

Lots of hugs to you and Mataeuz such a tough boy and a brave mummy

Maz babe you are the strongest woman I know *mwah*

:hug:

:hug: Maz you are doing so well.

Thankyou again for sharing your and Mateauz journey.

Deanne.

Oh Mazg my heart is breaking for what you were put through, thanks so much i feel honoured you are sharing this xxx

Oh Maz my heart is breaking for what you were put through, thanks so much i feel honoured you are sharing this xxx

Oh my goodness Maz :hug:. You are one amazing woman, I can't believe what you and your precious boy and family have been through. Thank you so much for sharing your story, you tell it so well. I look forward to reading the next installment.

Thank you so much for sharing. Your courage is unbelievable.

Thank you Maz, for sharing your incredible story - you are quite amazing.

More :hug:
I really don't know how you found the strength.

oh hun, even thought I know most of your story its amazing to hear you tell it bit by bit.

Once again, I am totally inspired and in awe of you.

The part where you were having to tell Willhelm that his sister was a brother, I'm pretty sure my anxiety levels doubled just reading that... and that was only a miniscule part of your story :hug:

:hug: Maz. What a journey you have had hun. I am crying so much reading this. :hug:

Maz - thankyou for sharing your story, I am sitting here with goose bumps, wanting to hear more of your journey. Your are so strong.

oh Maz, I am sitting here in tears, that lump in your throat from the extremem anger you feel, I had that same feeling when DS was tiny, I will ever forget it.

I remember when Matueuz was born and then got sick, I was logging on here several times a day to look at the updates on how he was doing and how you were holding up.

I just want to wrap my arms around you and cuddle you forever, its not fair that you had to go through all this. you are an incredible woman, you really are.

Oh maz, I am so happy that you're able to write all of this down. It must be so hard for you to do, but it'll be very good for you.
I have tears right now, no way I'm going back to bed now.
You've done an amazing job with your children, you should be very proud of your efforts. Not once have you given up, you take it all in, and think of how you can deal with it, and fix it.