Help Kaylah and Shey get back on their feet

In 2009 Kaylah was diagnosed with an inoperable brain tumour. The tumour was blocking the flow of fluid in her brain causing it to swell and fill with fluid, a condition called Hydrocephalus. She was 14 and was told that if they had discovered it any later, she could have been dead in 3 days. They performed an emergency surgery in which they drilled a hole in her brain to divert the flow of fluid and placed a dome to collect the excess fluid.

 

Kaylah and I have been friends since we were kids, just 9 years old. When we were 16 we started dating, and we moved out together when we were 18. Her symptoms started to dramatically worsen again and they discovered in addition to her previous blockage, her brain was also producing excess fluid and it couldn't cope. She was sleeping 18h a day and I would have to wake her to eat and shower. They discovered veins in the back of her head that had narrowed, the major arteries connected to the jugular, which was also increasing her pressure. While they were investigating the new condition, we fell pregnant with our first baby; a miracle baby as she had been told that she would be unable to conceive. Her symptoms improved temporarily and we got the a-ok to go on to have another baby and got married shortly after that. We've been together for almost a decade now. 

In the past 3 years, her symptoms worsened. At first they thought it was just pregnancy induced and I dropped down to part time to help care for her and we started investigating what could be done. Things got worse after the delivery of our Son. Kaylah was having multiple seizures in a week, agonising nerve pain, and her intracranial pressure problems. After a year of speaking with specialists, they agreed to investigate surgical options. We were referred to RPA and after another year of testing, a neurosurgeon took her on to place a VP Shunt. The procedure would involve brain surgery to insert a device that would drain her excess fluid elsewhere so that they could isolate what was pressure issues and what might be something else. The surgery was booked in for January, 2020.

 

Then 2020 happened. 

 

The year started with a surprise pregnancy that delayed the surgery. The surgeons agreed to reschedule the surgery go immediately after the baby was born. However, it resulted in a traumatic miscarriage. In the same week, our daughter slipped in the kitchen and broke her collar bone. The day after, Kaylah got sick, really sick. High temperature, vomiting, passing out and she wouldn't stay awake. I called an ambulance and got her taken to our local hospital. She had developed sepsis, a deadly infection of the blood which can be lethal. While they initially thought it was the miscarriage which caused it, turns out she had developed an extremely large gall stone, causing her gall bladder to be inflamed and infected. She was rushed to RPA and her gall bladder was removed. 

 

While recovering both physically and emotionally from the events of the first two months, the Coronovirus pandemic hit. 

Her surgery was cancelled as hospitals shut down all but life threatening emergency surgeries. We went into self isolation, kept the kids home from school and they were not coping well with the emotional, scary and isolating experience of the first 4 months. Kaylah then got hit with glandular fever that attacked her liver and sent her hepatic, something she is still struggling to overcome and is still testing positive for. On top of this Kaylah was still dealing with the neurological symptoms which had become her norm. She had stopped driving, cooking, and was sleeping on 5 pillows a time just to be in less pain. Throughout all of this I've used up my leave balance well and truly, and we do our best to get by. 

 

On the 12th of June Kaylah finally had a shunt inserted. She had two weeks notice prior to the surgery due to being at the top of the urgency list. She had been recovering well for a few days and but has taken a negative turn, and hasn't kept anything down in three days. 
It looks like more unpaid time off work and further stress for our little family, but we'll get through it. This is the first time we've asked for help and wouldn't be asking if it wasn't at a point now where we need it. We're unsure where the road ahead will take us or what other surprises life has in store.