Hi All,
Firstly thank you to everyone efforts and giving up their valuable time to help support Keli and our family. It feels surreal and a little emotional when I look back at the journey Keli has been through…what we have been through for the last 3 years but it shows that he is pretty strong, some say stubborn lol and resilient individual. Thank you for your kind thoughts, love and support. We are truly grateful.
The Journey:
It all started Aug 2018 with mild headaches, gradually increasing to severe headaches, loss of appetite and vomiting. Recently diagnosed with Type 2 Diabetes, Doctors had put his symptoms down to an unhealthy lifestyle and a reaction to his new Diabetic medication. Within a few weeks, he had collapsed at work (14/09/18) and was rushed to ED, Waitakere Hospital by Allen Masterton. A few nights in hospital he was released (17/09/18) with diagnosis of Renal Failure, due to his vomiting and headaches, a result of his new medication. This was stopped and an alternative was given instead.
Within a week, headaches and vomiting worsened and he was again taken back to ED, Waitakere Hospital where he was admitted for further tests and discharged on 04/10/18. Following day, I received a message after coming home from work, to return to Waitakere Hospital urgently. At 9.00pm that night he was re-admitted and experienced his very first lumbar puncture. The most intense and excruciating pain for any body to endure, let alone watch. He would over the course of his experience endure 30 plus, lumbar puncture. This was the only way of determining the strength of the infection and if it was still present in his body.
Next morning, he was diagnosed with Cryptococcus Meningitis, the fungal form of Meningitis. Commonly contracted by HIV patients due to their weakened immune system, a normal persons immunity would have warded off this bug. For Keli, his immunity did not. He underwent immediate treatment; the strongest type of antibiotic and... more lumbar punctures. After 2 weeks of treatment he was transferred to North Shore Hospital to be closer to Specialists. He would stay for 4 weeks, during which he would be admitted to ICU for 4 days due to treatment not working effectively. A decision was made by the Medical team that Shunts (plastic tube insertion placed in the cavity between the brain and skull)would be needed to keep him alive during treatment, to drain the excess fluid around the brain. Only place this could be done was Auckland Hospital.
Mid November 2018, Keli was transferred to Auckland Hospital, High Dependency Unit, Neurosurgical Ward 83 and lead him to numerous, 10 or more surgeries for EVD’s - external ventricle drains and of course, lumbar punctures. We had to wait for the strength of the infection to weaken to safe levels for the Shunts (IVD -Internal Ventricle Drains) to work efficiently and not be blocked.
With every EVD surgery there was a glimmer of hope with Keli returning back to his cheeky, talkative, healthy appetite self but this was short lived as the infection would still be creating build up of fluid in his brain, causing him to be sleepy and continually vomiting with headaches.
He was finally approved for Shunt surgery February 2019, where they operated with 1 shunt, then operated again to 2 shunts and again, settling with 3. A normal sized head would only require 1 so go figure with that big head of his lol but they are the reason he is alive. He would, as he has told countless of you, lose up 75kg, being admitted at 170kg and at his weakest was only weighing 95kg. From February to April he would continue to be sleepy and vomiting however his medical team were sure he was on the mend and would take the next steps to send him to rehabilitation. Only to return back to Neurosurgery Ward for another surgery and by May 2019, as night and day, he would be up, alert and talking as if he had not been incoherent, sleepy or vomiting the day/weeks before. It was the best day of my life! And I was finally reassured by the Neuro and Infectious Disease Specialists his infection was clear and Keli would survive this.
After being referred back to rehab in June 2019 ,he was finally discharged home July 2019, after an exhausting 11 months in hospitals. He continued with rehab until November 2019 however was re-admitted back to Auckland hospital in January 2020 for a shunt revision. In June 2020, and with the recent news of us expecting our 4th child, he was determined to return back to work so was referred back to Rehab and returned back to work at Bluestar formerly Nicholson Print in Sept 2019, on a casual basis. He remained there until recently, Sept 2021, where he again needed another shunt revision surgery and is now back home recovering.
Despite all of the above, I've experienced first-hand how extremely lucky we were to have the best support network; from our families, our work colleagues/friends and access to first class medical treatment. In December 2020 we welcomed our 4th child, Kelisiano Otes Edwards Jnr and is a final testament that life will always have unexpected turns but with it comes blessings. There were countless others who didn’t have the opportunity to return home, in the arms of loved ones, to return to work and laugh with colleagues/friends. He is very blessed and again you are all proving this with what each of you are doing.
Thank you for all you do for Keli and our family and...never give up hope! ❤
