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PLEASE READ THIS UPDATE. "SHARE" AND "LIKE"
Brentana is a 12 year old little girl with Down Syndrome. She lives in Wolfville and is an amazing child. She never gets sick and has never been in the hospital over night except for her heart surgery when she was 4.
Recently she got sick with a cold/cough. So on August 25th, after a couple weeks with no improvement, she went to the clinic and was told she had bronchitis and no drugs were needed. But on August 28th (one day after her 12th Birthday), her Mom took her to the ER at which point an X-ray was done and it was confirmed pneumonia. She was given antibiotics and sent home. She was in such bad shape by August 31st that again, she was taken to the ER and after another X-ray, she was immediately admitted to hospital for her pneumonia and effusions that had developed due to the pneumonia.
She was hooked to IV antibiotics at a double dose plus still an oral dose for 8 days plus an antibiotic for a yeast infection that developed in her mouth making eating and drinking hard and painful. So extra fluids to prevent dehydration were also administered through IV.
She had improved enough to go home on September 8th even though X-ray wasnt showing improvement with the effusion, it did show improvement with her pneumonia and clinically she did appear to be getting better.
After 2 days back at home and a one day attempt at school, it was clear that something was not right. She started crying and screaming, her breathing wasn't right, she was again sleeping sitting up, eating less, getting pale and all around seemed to be going backwards.
The doctor was called and an immediate X-ray was done and visit to the doctor at which time it was discovered that indeed her X-ray in her left lung was worse than it was while she was in the hospital. So again her drug treatment was changed to 3 new antibiotics (she has been on 9 types between IV and oral in a 2 week period which seems a bit scary). Those started on September 12th and had a follow-up on the morning of September 14th which brings us to this date.
After 5 doses of the new medication, no real improvement is showing. Infact, she is now in a lot of physical pain. She is not walking and screams in pain if you try and pick her up or move her in anyway. She continues to sleep sitting up, and crying out in pain which only causes her to breath worse.
You have to understand that Brentana doesn't speak. She uses an ipad but at this point only taps on "sad' and "sick". It's heart breaking. She is back to full time pullups because she can not get out of bed and is too sick to even care about that right now. So she is being changed and bathed like an infant at this point. She is being spoon fed when she will allow it because she is too weak to hold her spoon.
At this point there is nothing more that can be done and even after IWK consult, they agree that time may be what it will take. But how much time? And when will improvements be seen? Who knows right now but this is extremely hard on her and the family.
Both parents were unable to work during the hospitalization because one had to stay in hospital with her and the other at home with the other 2. They could not just get any babysitter for the children at home because their youngest daughter is type 1 Diabetic and Celiac so she requires injections. So they were both without work. Both started new jobs and have no vacation or sick time available so the family income was zero.
Mom has returned to work as much as possible to ensure she doesn't lose her new job and Dad had to give up 2 of his jobs and put the other on hold for as long as he can because he now has to be home with Brentana 24/7.
Their main vehicle needs so much repair that they can't afford to fix it so they are letting it go back to the bank, they sold off their second vehicle to make a bit of money, and they went out and bought a $300 vehicle in hopes it will last for a bit.
They have since recieved a disconnection notice from the power company which hopefully it doesn't come to that. Not to mention trying not to fall behind on everything else which is hard to do when all you can do is focus on your child.
I have changed the goal for this family since the initial goal because the hope was that everything would have started to improve by now but all that is up in the air at this point because we have no way of knowing how long this little girl will take to get better nor how long it will be for this family to return to normal.
So please, anything you can give to this family would be very much appreciated. And sharing as much as possible through social media will help a lot. So please "like" and "share" this story with everyone you know so that we can make a real difference and relieve as much stress as we possibly can for this family.
And for those who have asked for the mailing address as well, it is 13 Huron Ave Wolfville NS B4P 2J7
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