My son had a stroke

[Aidedhoney]

Hiya guys,

My 18month old son went in for heart surgery and while in theatre he suffered a stroke that has left him with "significant brain damage".

Alex has astounded everyone with the progress he has made in the short term, he has several mobility issues (left arm and right leg)
No one knows mentally how he will be when hes older but so far he seems to be doing great.
In fact hes has proved serveral doctors wrong.

We have been let out of hospital for the weekend (been in a month), really looking for someone who has experience of this kind of thing

Thanks x

 

[isil]

omg didn't even know you were going through all this I have no advice, but thinking of you xxx

 

[v2007]

Thinking of you.

V xxxx

 

[leeanne]

Thinking of you hon!

 

[bek74]

Thinking of you and your son

 

[hayley x]

thinking of you x

 

[Vickie]

No advice here either but good luck, I hope that he continues to prove all the doctors wrong

 

[ILoveShoes]

I hope your little boy is ok.
xx

 

[Newt]

you go boyo, prove them all wrong, I am sorry I dont have anything more useful, must be a nightmare for you

 

[AP]

Sweets I had no idea this had happened..
I'm sure they have already told you this, but because alex is so young his brain can still rewire, unlike an adult.
Our Alex had a huge brain bleed, (they call it a neonatal stroke)same applied really. With some physio if required, things can be better our Alex hasn't needed physio yet, and again she's prooved the doctors so wrong. Best taking any outlooks from them with a pinch of salt no-one can determine what will happen.

Massive hugs

 

[Aidedhoney]

Sweets I had no idea this had happened..
I'm sure they have already told you this, but because alex is so young his brain can still rewire, unlike an adult.
Our Alex had a huge brain bleed, (they call it a neonatal stroke)same applied really. With some physio if required, things can be better our Alex hasn't needed physio yet, and again she's prooved the doctors so wrong. Best taking any outlooks from them with a pinch of salt no-one can determine what will happen.

Massive hugs

Thank you very much, yeah they have stressed that a childs stroke is different from an adults. Obviously as the swelling has gone down hes got so much better.
he is now able to sit for short periods of time where last week he couldnt even hold his head up.
The physio is tough but its doing wonders for him, can see the difference with each session.

Its all taken with a pinch of salt now as this time 2 weeks ago i was getting ready to say good bye to my guy. But hes a fighter and hes proved them wrong xxx

Thanks hun

 

[Lottie86]

Oh my goodness I had no idea Are you at sick kids or down in Glasgow?

I'm glad he is proving them wrong, he's such a fab little boy and I hope he continues to improve every day.

Once Alex is back home full time and everything has calmed down we'll have to meet up again xx

 

[Aidedhoney]

Oh my goodness I had no idea Are you at sick kids or down in Glasgow?

I'm glad he is proving them wrong, he's such a fab little boy and I hope he continues to improve every day.

Once Alex is back home full time and everything has calmed down we'll have to meet up again xx

Thank you very much

We were down in Glasgow until Tuesday where we were moved up to RACH, we are out for the weekend for good behaviour, due back in on wed.
I am hoping that we will get out most weekends or all going well a plan will be put in place where most of Alex's physio can be done in the community.

We could have stayed in Glasgow for his rehab but was pretty pointless as he will have to get to know the team up here at some point so hence the decision to come back.

hope everything is well with Finlay xxx

 

[Lottie86]

The staff at RACH are fantastic so he's in excellent hands. Is he in HDU or up on one of the wards?

Findlay has all his physio, OT etc come out to the house so they should be able to sort it for Alex too.

Will send you a pm xx

 

[Aidedhoney]

The staff at RACH are fantastic so he's in excellent hands. Is he in HDU or up on one of the wards?

Findlay has all his physio, OT etc come out to the house so they should be able to sort it for Alex too.

Will send you a pm xx

Hes on the medical ward, we were in isolation till his mrsa swabs came back (only done as we had come from another hospital)
I

The staff are fantastic, only compliant i have is that the 2 brain docs are off right through Christmas and New year!!!!

The physio department have been great they even gave me a tumble form to take home for the weekend but as i said earlier Alex is sitting really well, does have the odd wobble but so far so good.
Speech and language have assesed him as he was been Ng fed but that was more due to been on the ventilator for a week, so far he seems to be able to eat and drink as normal.

Its also easy to forget that hes also recovering from major heart surgery, hopefully next week will tell a lot more in terms of a long term plan for Alex.

Thank you for the kind words xx

 

[Lottie86]

God I hated those isolation rooms. Good view of the helipad though to pass the time!

That's not good both neuro guys are off. Dr Shah is absolutely lovely if he is the one you see when they return. He's a fab dr and always takes the time to explain things to you.

That's brilliant he is sitting really well already, he's a little miracle!!

 

[Agiboma]

dont have any experience with this but you may want to try another forumn inspire.com the moms on their should be able to help

 

[Aidedhoney]

God I hated those isolation rooms. Good view of the helipad though to pass the time!

That's not good both neuro guys are off. Dr Shah is absolutely lovely if he is the one you see when they return. He's a fab dr and always takes the time to explain things to you.

That's brilliant he is sitting really well already, he's a little miracle!!

Brilliant that you know Dr Shah it is him that has been mentioned and Dr OHara from Raden.

LOL @ the helipad.............least the pull out beds are comfy lol

 

[netty]

 

[MrsRabbit]

I think children prove doctors and everyone else wrong all the time. DD was "significantly delayed" at 10 months and now she's walking and graduated from physical therapy.

DS loves the Helicopter. Although he was in the ICU in September not the regular hospital room so the wrong side of the building.

I hope and pray your son continues to improve.