Hi Everyone
12 months ago, our previous blog was deleted due to a "software update".
I set up the new blog thinking it was the beginning of something wonderful.
A new beginning celebrating two children that are amazing and a whole family traveling through the journey that is Ataxia Telangiectasia where Type 1 Diabetes was just thrown in for good measure.
A child already diagnosed with this horrendous disease and all the heartbreak that goes along with accepting you no longer have 2 children that will go through life like anyone else.
Schooling, marriage, children and growing old.
Then the second child is diagnosed with Type 1 Diabetes.
Ok.
It is hard.
But it is manageable and we can try, at least, to stay on top of that one.
One is Terminal and one is not.
The hospital visit for the second child meant that we were all separated over the Christmas period and that is what hurt the most.
There have been scary times with the Type 1 over the last two and a half years, but nothing that compares to the first child's diagnosis.
With A-T, you are virtually given an end date.
You can monitor and maintain, but it will happen.
Two people meet in 1990 and are a perfect match.
They are young, but fight to stay together.
They know that they match perfectly.
They DREAM of a life of growing old together,
Houses, cars, holidays etc.
But then life throws them a major curveball.
Children are born to them with diseases that are unimaginable.
Diseases where they cannot get sick with the "common cold".
It could kill them.
Ok.
Let's stay away from people who are sick.
You can do that at home, but it is hard.
Parents send children to school sick all the time.
People cannot understand the importance of it for a family like ours.
But the "terminal" side of it is there constantly.
Each "happy" day it is there.
Each "sad" day it is there.
You try to hold onto the thought "But she is still here now. Make the most of it".
But it is so hard.
Over 10 years we have watched Amelia's motor skills deplete to the point where she cannot walk by herself anymore.
We keep walking her, doing our own backs, hips and knees in the process, trying to hold onto that ONE THING.
Must keep the legs moving.
We toilet and feed her now.
Her speech is so slow and slurred, that she gets SO frustrated with us when we cannot understand her.
Ataxia Telangiectasia is not only terminal and a loss of motor skills.........
The child is also 1000 times more likely to get Cancer.
We thought we were safe from the cancer part.
A-T kids are generally extremely sick with colds and coughs that they cannot recover from.
Amelia has NEVER been.
She has always been considered quite "healthy".
When Type 1 Diabetes was sick, I had him in hospital.
You cannot eat to raise your levels/have insulin to lower your levels when you are sick.
Who wants to eat when they are sick?
It stuffs the whole management system up!
The mental anguish of Type 1 and the mental anguish of having A-T is difficult for everyone.
Constant talking and psychologists become involved.
The ability to always search for a positive is the most valuable trait to have for anyone.
But we are proud of our "happy" house.
We live like anyone else.
There is lots of sarcasm, laughter and discussions about life.
We appreciate a smile and are grateful for our friends and family.
We are generally positive.
I thought that we had been dealt MORE than our fair dose of heartache in this lifetime.
But then came another blow.......
A-T child starting complaining of feeling "hot" all the time.
Then she started vomiting.
She quite often vomits when changes around her occur.
New bus driver? New class? Someone sitting with her while her dad and I try to be a couple.
One vomit and then she is fine.
We had just returned from Thailand.
She had been "hot" over there, but it WAS hot.
She started vomiting on the plane when returning home.
She continued vomiting at home.
But it was more than once.
It would continue every morning until lunchtime.
It was many times.
She started complaining of bad "stomach cramps".
I gave it 2 days to see if it stopped.
It didn't.
I put a post on FB and many of my A-T friends said "take her to hospital".
Normally your heart has to stop for me to take you to hospital.
I started wondering if it was actually something "more".
The local doctor that came to our house when the bad stomach cramps began, had been concerned about her swollen stomach (it was hard).
Maybe I should get more expert advice.
While trying to keep myself calm, because I knew going to hospital was going to be a major upheaval for everyone, I debated with myself over how I was going to handle this.
Ambulance because I cannot move her?
But they will only take her to the local hospital.
They do not know anything about Amelia and her A-T.
Do we drive 1 hour away to the local children's hospital where she is an outpatient and they know about her.
Would she handle the drive while being so sick?
Am I overreacting and wasting everyone's time?
I packed a bag.
I don't really know what I put in that bag, but I knew we may have to stay overnight.
Tom?
He was at school and going to be dropped back home in a few hours.
What was I going to do about him?
I rang my parents for him to stay the night there and packed an overnight bag for him, including all of his insulin and needles.
I rang Scott at work and told him of my plan.
"Seriously?" he said. "Do you think she is that bad?' he asked.
I explained my concerns and he agreed I should go.
He said he would meet me up there after work if we were still there.
We arrived safely at Royal Children's Hospital in Melbourne.
The drive was calm.
I needed it to be for both Amelia and I.
My brain had fighting thoughts between me "overeacting" and "just checking".
Inside the Emergency Triage section there were A LOT of people.
It was 12:30pm.
Apparently many families use it like it is a "general GP" due to the long waits to get into actual local doctors.
They are sent to an even bigger waiting room (approximately 60 families when we arrived), while others, like us, are rushed through.
Amelia was not going to handle sitting in a waiting room for long, so I was hoping to get in quick.
We got in very quickly and into a bed.
Scott had remembered a time where Amelia had vomited like this when she was younger.
It had been a UTI.
We did a urine test and it came back clear.
They started feeling her tummy area and commented that she was sore around the appendix area.
A basic ultrasound was ordered.
Through this test they told me her bladder was VERY full.
3 LITRES FULL!
Humiliation and tears ensued as they tried to drain the bladder.
Scott arrived after 6 hours of them trying and it was just not happening.
The doctor was quietly telling nurses off for what should be a "basic procedure".
Amelia was very upset and angry and telling them that they were not allowed to try again.
Eventually the doctor said "I will do it myself through ultrasound".
Two nurses he held to a very high standard assisted with happy gas with the last and final try.
At 10:30pm, he looked at the ultrasound screen and said
"I don't think I am looking at a bladder at all. I think it is some kind of cyst".
Scott and I knew instantly.
It was not a cyst.
14cm in size and full of 1 litre in fluid.
It was not a cyst.
.......to be continued..........
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