I am re posting this as part of the #definenormal blog hop
Nate has complex needs. Our conversations could seem a bit bizarre...
Did you flush his ng?
He needs repeat prescriptions
What time is the OT/physio/paed/resp clinic/neuro/opthamologist/feeding clinic/ appointment again?
Where's the syringes?
His cannula has popped out have you seen the hyperfix?
He ate a wotsit!
He reached out!
He made eye contact!
The probes broken
Beep beep beep ( sats monitor)
I'm going to put my fist through that in a minute ( sats monitor)
I'm exhausted
Pass the calpol
Ive been on the phone to..blank
Blank rang
Nurses are coming out
We need to go to hospital ring the ward
Love you/ lub oo
I must wash that Winnie the poo it's mingin
Where's his gators?
He held his head!
He loved his group
Weve been out all day
He's snotty again ( panic)
I'm putting him on his ventilator now
the kids
Friday, 27 January 2012
Wednesday, 25 January 2012
Bright balloons
So yesterday I took Nate to a visual impairment group at a sensory room. They turned off the lights and put Nate in a white tent. They projected bright balloons onto the tent......
Which he followed
And reached for
He should have been referred to this community visual impairment team a year ago. But apparently his opthamologist doesnt bother if the child has complex needs!!!!
Today the team has been out again and have established he can locate close objects and follow moving ones a little. He also responds best to shiny things. :)
Which he followed
And reached for
He should have been referred to this community visual impairment team a year ago. But apparently his opthamologist doesnt bother if the child has complex needs!!!!
Today the team has been out again and have established he can locate close objects and follow moving ones a little. He also responds best to shiny things. :)
Wednesday, 18 January 2012
I remember when
I remember when
I had a high paid job, money to burn, holidays abroad.
I enjoyed a social life, meals out, time with friends.
I stressed about work
I fell out with my husband over stupid things
I jointly owned a house
I had a daughter I hardly saw working full time
I was blessed with another child, a unique little boy
I was told he wouldn't live long, that he had this syndrome or that syndrome
I had a boy who didn't breathe well, couldn't move, didn't open his eyes, didn't respond to light or sound, didn't feed, didn't make a sound, things were bleak.
I had a boy who we were told had "unusual features"
I felt very alone
How things change
We have no money, no where to live
I spend more time with my daughter who loves me picking her up from school
I make friends with nurses, portage workers, anyone we can depend on
I depend on charities for help and support
I see health professionals more than my own friends and family
I have a wonderful mature intelligent daughter, and very special son.
I have a son who laughs and smiles almost constantly, is sociable, loves noise and music, has started to play and explore his toys "properly", is starting to see, is breathing better, is stronger, is loving, and yesterday fed himself a wotsit.
Dance with me round your living room, celebrate with me. Eat a packet of wotsits.
Sometimes we don't realise the important things, the things that really matter. And then your child smears orange sticky crisps around their face and you start to cry with happiness, and realise the positives.
I had a high paid job, money to burn, holidays abroad.
I enjoyed a social life, meals out, time with friends.
I stressed about work
I fell out with my husband over stupid things
I jointly owned a house
I had a daughter I hardly saw working full time
I was blessed with another child, a unique little boy
I was told he wouldn't live long, that he had this syndrome or that syndrome
I had a boy who didn't breathe well, couldn't move, didn't open his eyes, didn't respond to light or sound, didn't feed, didn't make a sound, things were bleak.
I had a boy who we were told had "unusual features"
I felt very alone
How things change
We have no money, no where to live
I spend more time with my daughter who loves me picking her up from school
I make friends with nurses, portage workers, anyone we can depend on
I depend on charities for help and support
I see health professionals more than my own friends and family
I have a wonderful mature intelligent daughter, and very special son.
I have a son who laughs and smiles almost constantly, is sociable, loves noise and music, has started to play and explore his toys "properly", is starting to see, is breathing better, is stronger, is loving, and yesterday fed himself a wotsit.
Dance with me round your living room, celebrate with me. Eat a packet of wotsits.
Sometimes we don't realise the important things, the things that really matter. And then your child smears orange sticky crisps around their face and you start to cry with happiness, and realise the positives.
Tuesday, 3 January 2012
Hospital stays, new year and all that
So I have to laugh when I see my last post was called "an oddly decent week" - I'm thinking that was just asking for trouble!
Nate started the Sunday before Xmas with red sticky eyes and a high temperature. I took him to our local nearest hospital who gave us antibiotics for a chest infection (?) and sent us away. A few hrs later he was worse and so we took him to the main hospital. ( we have open access to both but if an overnight stay is needed or suspected the main one is the only one that can cater for his nippy ventilator). He was seen by drs and deemed to have an ear infection, which the antibiotics would help with unless it was due to a virus and we we sent home again. We had a difficult night managing nate on his ventilator and ended up back at the main hospital the next day. We finally got through to the dr that Nate can do scarey things with a high temp and they kept us in. By this time his ear was really bad apparently. We got home the next day.
The run up to Christmas was one of panic. As soon as his ear seemed better he started with snot and a cough and was very tired. somehow we got through Xmas but his antibiotics ended on Xmas day and by Tuesday his temp shot up again. Suddenly and scarily. He went floppy and started to shake all over and started needing more oxygen. Calling an ambulance seemed pointless after the 23 minute wait last time, so we hoofed calpol and ibuprofen down his ng and chucked him in the car and intended to go to the main hospital
. We didn't make it. He went a "bit funny" in the car and we headed to the local hospital
A and e instead. Cue me running in saying my baby isn't breathing well please help. Well that allowed que jumping! Lots of blood was taken but his temp was over 40 and we were put on the children's ward. It took till 11pm before we were transferred to the main hospital with 2 panicky paramedics who "don't like children they do funny things". At the main hospital the machine that Nate responds best to wasn't available and we had to make do with sats of 86 on his nippy :(. Eventually a humicare machine was stolen from PICU and he started to improve over a few days. It was haemophilus influenza. Which starts as ear and eye infection and spreads downwards. The right antibiotics made a difference.
Me and Michael did our usual 2 days on 2 off staying with Nate overnight and we were faced with new years eve apart for the first time in 10 years. My husband and eldest are sneaky gits though and at 11.40 pm I was awoken on the ward by a lively 5 year old and the hubby. So we got to spend new year as a family :) Nate escaped hospital the next day.
So it's a new year now, and yes I'm still feeling stressed, anxious and low. But it's better than this time last year when I spiralled into depression as the new year had make me think of everything that had happened with Nate since birth. The new year needs to bring change. We have made some hard financial decisions I won't go into, and need to move house, desperately. But I need to focus on optimism, fresh starts, family, a new baby niece, and the good things in our life.
Nate started the Sunday before Xmas with red sticky eyes and a high temperature. I took him to our local nearest hospital who gave us antibiotics for a chest infection (?) and sent us away. A few hrs later he was worse and so we took him to the main hospital. ( we have open access to both but if an overnight stay is needed or suspected the main one is the only one that can cater for his nippy ventilator). He was seen by drs and deemed to have an ear infection, which the antibiotics would help with unless it was due to a virus and we we sent home again. We had a difficult night managing nate on his ventilator and ended up back at the main hospital the next day. We finally got through to the dr that Nate can do scarey things with a high temp and they kept us in. By this time his ear was really bad apparently. We got home the next day.
The run up to Christmas was one of panic. As soon as his ear seemed better he started with snot and a cough and was very tired. somehow we got through Xmas but his antibiotics ended on Xmas day and by Tuesday his temp shot up again. Suddenly and scarily. He went floppy and started to shake all over and started needing more oxygen. Calling an ambulance seemed pointless after the 23 minute wait last time, so we hoofed calpol and ibuprofen down his ng and chucked him in the car and intended to go to the main hospital
. We didn't make it. He went a "bit funny" in the car and we headed to the local hospital
A and e instead. Cue me running in saying my baby isn't breathing well please help. Well that allowed que jumping! Lots of blood was taken but his temp was over 40 and we were put on the children's ward. It took till 11pm before we were transferred to the main hospital with 2 panicky paramedics who "don't like children they do funny things". At the main hospital the machine that Nate responds best to wasn't available and we had to make do with sats of 86 on his nippy :(. Eventually a humicare machine was stolen from PICU and he started to improve over a few days. It was haemophilus influenza. Which starts as ear and eye infection and spreads downwards. The right antibiotics made a difference.
Me and Michael did our usual 2 days on 2 off staying with Nate overnight and we were faced with new years eve apart for the first time in 10 years. My husband and eldest are sneaky gits though and at 11.40 pm I was awoken on the ward by a lively 5 year old and the hubby. So we got to spend new year as a family :) Nate escaped hospital the next day.
So it's a new year now, and yes I'm still feeling stressed, anxious and low. But it's better than this time last year when I spiralled into depression as the new year had make me think of everything that had happened with Nate since birth. The new year needs to bring change. We have made some hard financial decisions I won't go into, and need to move house, desperately. But I need to focus on optimism, fresh starts, family, a new baby niece, and the good things in our life.
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