PH Parents of 09..
Discussion
escargot - sorry to hear that.
SBDJ - hope things improve soon. I can imagine that it must have been an awful time all round.
My littlest one is now 2.5 years old. The bad times seem a long time ago thankfully. He's potty trained (well mostly), in a bed and at preschool. He still cannot tolerate dairy and we have the inhalers. He's very short and his head is still huge. Sometimes I think I could brave another but other times I feel that would be rolling the dice too many times.
SBDJ - hope things improve soon. I can imagine that it must have been an awful time all round.
My littlest one is now 2.5 years old. The bad times seem a long time ago thankfully. He's potty trained (well mostly), in a bed and at preschool. He still cannot tolerate dairy and we have the inhalers. He's very short and his head is still huge. Sometimes I think I could brave another but other times I feel that would be rolling the dice too many times.
Been back in hospital all week again after he went downhill again but no-one has yet been able to work out why he is unwell. Had a few scans, just waiting on an MRI in the morning now.
Had a couple of really rough nights too - his resting heart rate is far too low (40-50 bpm) and the monitors reported asystole and extreme bradycardia a few times last night.
Been given a DNR by his consultant today which they want me to look through. Not a nice experience that one.
Had a couple of really rough nights too - his resting heart rate is far too low (40-50 bpm) and the monitors reported asystole and extreme bradycardia a few times last night.
Been given a DNR by his consultant today which they want me to look through. Not a nice experience that one.
SBDJ said:
Been back in hospital all week again after he went downhill again but no-one has yet been able to work out why he is unwell. Had a few scans, just waiting on an MRI in the morning now.
Had a couple of really rough nights too - his resting heart rate is far too low (40-50 bpm) and the monitors reported asystole and extreme bradycardia a few times last night.
Been given a DNR by his consultant today which they want me to look through. Not a nice experience that one.
God, how scary. Poor little lad. Had a couple of really rough nights too - his resting heart rate is far too low (40-50 bpm) and the monitors reported asystole and extreme bradycardia a few times last night.
Been given a DNR by his consultant today which they want me to look through. Not a nice experience that one.
I hope things are a lot better now, a week on - I've been thinking about you guys loads. Sorry I didn't comment earlier, really didn't know what to say.
I've seen too many proposed and actual DNRs based on completely mistaken assumptions. Only you and his mum know what's right for Mason but do keep an eye out for the possibility that the doctor in question might actually not realise that M is normally a pretty lively little boy who plays and goes to school and generally is not usually in his present poorly state. It can happen easily when they only see the child when they're very unwell - the picture of what the kid's normally like gets completely missed out.
I believe they want to call a meeting of his specialists, school teachers and social services to discuss it all.
He's much happier at the moment - lots of smiling and laughing and we've got MRI results back that showed no recent damage to his brain. This unfortunately has left them at a complete loss as to why he still won't use his right arm, why his eyes are off to the left and why he won't make any communication sounds any more.
He also won't sleep at all and is helping me post this now...
He's much happier at the moment - lots of smiling and laughing and we've got MRI results back that showed no recent damage to his brain. This unfortunately has left them at a complete loss as to why he still won't use his right arm, why his eyes are off to the left and why he won't make any communication sounds any more.
He also won't sleep at all and is helping me post this now...
escargot said:
Heading over to France tomorrow to fetch my little man. I am so bloody excited, I barely slept a wink last night and there's no chance I'll get any kip tonight at all! 
Have a great time mate. My wee boy is so much fun. He's not little for his age any more which is a bonus. I'm keeping my fingers crossed that we get discharged from the peads this month. We have been constantly under peads since June 2008 as my second child was also prem and was still under the hospital when our youngest was born. 
Recent video of Luca in action.
http://youtu.be/0vIedqLZTq4
I reckon he's got superunleaded in his veins
From Holiday in Italy this summer.
and Summer in the UK
http://youtu.be/0vIedqLZTq4
I reckon he's got superunleaded in his veins
From Holiday in Italy this summer.
and Summer in the UK
Edited by StuB on Monday 15th October 14:50
It's my boys birthday this week. And I am having the usual attack of the guilts. Hopefully this will be the last year. The whole scbu stress thing comes back - I can remember some bits of NICU so vividly. I think it all resurfaced as we had to see the peads consultant last week and to waste a bit of time I did the walk around the hospital and passed the unit.
My son was discharged from the peads recently so all is well.
I just don't know if I could do it all again - being so ill and then sbcu bit then the inevitable hospital stays etc. I am getting on now and need to make up my mind.
My son was discharged from the peads recently so all is well.
I just don't know if I could do it all again - being so ill and then sbcu bit then the inevitable hospital stays etc. I am getting on now and need to make up my mind.
Suprisingly well here.
Since last hospital admission we havent had any admissions which makes a change.
I got the vomiting under control it seems by insisting on a change in his milk feeds.
School has been going well, this is his second year and he started full time in September. He loves it and they love him too. Various respite options are available to us now too. I was a bit wary of the involvement of social services however they are keeping a distance whilst providing advice which is fine in my book.
As a bonus they tried to put a bracelet on him at school, he looked at it, looked at her and said 'off'. I'm hoping he didnt mumble anything first!
Good to see everyone doing so well, hard to believe it has almost been 4 years!
Since last hospital admission we havent had any admissions which makes a change.
I got the vomiting under control it seems by insisting on a change in his milk feeds.
School has been going well, this is his second year and he started full time in September. He loves it and they love him too. Various respite options are available to us now too. I was a bit wary of the involvement of social services however they are keeping a distance whilst providing advice which is fine in my book.
As a bonus they tried to put a bracelet on him at school, he looked at it, looked at her and said 'off'. I'm hoping he didnt mumble anything first!
Good to see everyone doing so well, hard to believe it has almost been 4 years!
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