Events Leading to My Daughter’s Passing

December 17th, 2015
Paytan was taken off the antifungal medication for the infection that attacked her liver, lung, kidney and spleen.  The reason for taking her off was a reasonable one … she has been on the medication for over a year and the medication is cleared through her liver and kidneys… both of which could use a huge break from the meds… the legions are still present and have not shrunk… but they have not gotten any bigger.
December 19th
We received Sens game tickets in the Bobby Ryan box courtesy of Brenda Physic Dept.  Paytan was able to bring her very special friend Luca.  And Santa came to visit.
December 22nd, 2015
We got to see the Trans Siberian Orchestra concert… although, my little one spent the concert asleep on the chair.  She was drained from receiving chemo all morning.
She wasn’t feeling very well since they took her off the antifungal.  She has developed sever mouth ulcers and starting on bum ulcers now.  Extremely painful!
December 31st, 2015
Spent the wee hours of the morning of New Years Day at Cheo.  I had to take Paytan in to get them to give her morphine to relieve the incredible amount of pain she was in from the “fishers” bum ulcers and cuts outside and internal.  My girl had a highest dose possible and she was still crawling all over the stretcher and screaming in pain!  They sent us home with a prescription for Nitroglycerin cream.  The hopes was to put the cream on her bum to relax the muscle in the hopes again to allow more circulation to the skin…. therefore allowing the cuts and ulcers fresh oxygenated blood to heal.
January 1st, 2016
So, on a scale of 1 to 10…. 10 being the worst…. I was told at CHEO and now the pharmacy that “anal fishers” are 9! UGH!!
The cream is a nitroglycerin cream. This cream has the same medicine some people use for their heart.
The propose of the cream is to increase blood flow to the fishers…. This promoting healing with good blood circulation.
When you are in pain, especially severe pain you tighten muscles, and veins and vessels also constrict…. Causing a decrease in proper blood flow to the area. And as a result, the fishers are extremely slow to heal.
So, with stool softener, this cream, and a barrier cream, Tylenol and gravel …. Fingers crossed and lots of prayers… Her bottom will heal quickly.
She also had several large mouth sores… Making it difficult to eat. We have a “magic mouth wash”… We are actually using a q-tip to apply instead of her rinsing… (Not supposed to swallow… Which is hard not to do trying to reach the sore in her throat)…. Makes her tummy upset.
….. She’s sleeping now
January 2nd
Doctors have done rounds… Asked a million questions…
But they are stumped.
Her organs, liver and kidneys have been affected. Blood work is showing high liver enzymes, kidneys are stressed, her white blood cell count (fights off infections) is very low. And they are having issues with lowering her heart rate.
There could be an infection in her lower bowel… Or in her port… Her liver her kidneys…
She is yellow and pale…
She can’t swallow things… Just throws up.
She has a large amount of phlegm coming up…. Her throat is raw and she has lost her voice.
When pushing on her tummy, liver area is sensitive.
… More bolus hydration again…and then they will give her 2x hydration in preparation for a CT scan today.
…… This is ridiculous! Enough already!
January 3rd 2016
Paytan has gone into liver failure at 11 am this morning ……
Her portacath got infected and when it was flushed during an access the infection spread into her blood stream.
Currently the lab is growing 2 “bugs” in her sample. Have not been identified yet….
Her liver can not do all the jobs it is supposed to do.
She has had multiple platelets, blood, clotting agents and plasma products…. To help her body to fight the infection.
We are flying tonight to Sick kids in TO for her to be assessed for a liver transplant.

It's only a BAD DAY if you say it is