Initially it was a complete shock upon her diagnosis when we were told that were we not leaving the hospital for at least a month. Learning of her Leukemia was difficult enough to comprehend, realizing that we wouldn't be going home that day to pack or prepare was a shock to the system.
We had no time to adjust to the "new plan", the day was a blur. We went from an unsuspecting doctor's appointment to emergency bloodwork to diagnosis and admission at Stollery (4E3), unsuccessful attempts to IV a 2 year old with collapsed veins, to a crash cart at her bedside, ongoing blood tranfusions and a full time nurse in a matter of a few hours. Blood 98% cancer.
If it wasnt for the gift of life (blood), she wouldnt be around today.
It seemed that after the first month we were still not accustomed to her regime which involved checking vitals, temperature, administering chemotherapy several times a day, proper hydration, more transfusions, and physio to assist with getting her up and walking.
Her diagnosis came rather abruptly, much like her release - we were unprepared that she was going home.
All I remember was being panic stricken (both Gord and I). Kali was still having difficulty swallowing the 7 pills (7 times a day). What toddler is able to swallow a pill, nevermind 7 at a time? They could not be crushed or converted to liquid so a life care worker was assigned to work with her teaching her to swallow pills. Over time, it worked, but not before we were sent home, so this was very scary.
Also Kali was not walking yet, could not bear weight on her legs, and she was back in diapers. Her broviac (a central line that hangs out of the body just below the heart) was a scary device to care for. This is where her blood work would be taken, and the majority of her chemo administered. A lot can go dangerously wrong with a Broviac. They can get infected, plugged with blood clots, or accidentally yanked out of the body. Any of these situations can cause sudden death while it all happens at home. Needless to say, we did not feel ready to take our child home. She was still on morphine unconsolable and shivering with the pain and effects from chemo, and had the appetite of my son in law (Steven) from steroids (that turned our daughter into a swollen version of the worst case of pms Ive ever seen).
We begged the doctors to keep her longer, but it was explained to us that a child (in her situation, with vitals reasonably stable) would improve faster in her home environment.
The decision had promise to improve morale, normalcy, and definItely uninterrupted sleep (which is an impossibility in a hospital environment, particularly in Peds Oncology).
We reluctantly took Kali home, scared stiff and not feeling confident with the doctors decision.
Taking off those little striped jammies she had been in for the last month, and replacing them with her favorite dress (which did not fit due to her 10 pound weight gain) was the first step in Kali's transition back home.
I'll never forget the smile on her round little face when she was greeted at the door by her sisters.
It was that point that I understood why they send them home. That night we cranked up the tunes and celebrated her "coming home".
She was happy.... We were still nervous. It was hard.
We begged the doctors to keep her longer, but it was explained to us that a child (in her situation, with vitals reasonably stable) would improve faster in her home environment.
The decision had promise to improve morale, normalcy, and definItely uninterrupted sleep (which is an impossibility in a hospital environment, particularly in Peds Oncology).
We reluctantly took Kali home, scared stiff and not feeling confident with the doctors decision.
Taking off those little striped jammies she had been in for the last month, and replacing them with her favorite dress (which did not fit due to her 10 pound weight gain) was the first step in Kali's transition back home.
I'll never forget the smile on her round little face when she was greeted at the door by her sisters.
It was that point that I understood why they send them home. That night we cranked up the tunes and celebrated her "coming home".
She was happy.... We were still nervous. It was hard.
To be continued.....
No comments:
Post a Comment