Going home

My last post talked about my friend's daughter who was released from Stollery yesterday. This became a bitter sweet experience for her parents when she was released. "Going home" is thought to be good news (as one would think...), but it's very scary.

My post today is triggered by what these parents went through on her release day - it reflects my own experience (Gord too) with bringing Kali home for the first time from Peds Oncology.

Yesterday morning I received a text from Rayne's Dad reflecting his concern for her release. The concern being that she continued to have a great deal of pain following surgery. I understood the concern. She was thrashing around through the night and very irritable during the day. When I visited her, I took note of how itchy this poor girl was, to the level where she was ready to peel off her skin.

Morphine. She was cranky and irrational - Morphine. I had seen THIS a few times before between Kali's one month of Morphine and Mandy's experience with it following her kidney surgery.

It's definitely necessary to take the edge off when a person becomes riddled with pain and nearly delirious, but not without side effects.

I was happy for Rayne's sake to hear the news that she was going home, but knew how nervous her parents would be around that. It's scary taking your child home from a safe environment where

there is constant medical attention. Anything can go wrong wrong outside that environment, and that means risk. It also means another 6-9 hours in emerg, and repeating the entire process all over again.

This is exhausting both physically and emotionally for both patient and parent.

I'm thrilled to report that Rayne is back home, playing her video games and eating hamburgers. THIS is the emotional / psychological component of sending the patient home, sometimes a greater value that keeping them in that safe place.

Gord and I learned this when our daughter was released after her first month in hospital. Kali was not even walking yet - not even close to bearing weight on her weak legs when she was released from her IV tower, and careful supervision in 4E3 (Peds Oncology). I recall us both being terrified. Gord and I tryied to convince the doctors to keep her longer. Who would check her vitals every hour? No crash cart nearby. Flush and care for her broviac, draw blood, administer oral chemo when she is spitting it everywhere? What happens if she fevers? These were all valid concerns, but the closing statement remained - "She's better off at home". We did not understand this until we popped our swollen daughter into the car (in her favourite dress) and watched her little face light up as we rounded the corner to the house. She hadnt smiled in so long. Having her sisters greet her at the door of her "home" was the best thing for her broken spirit, and it was then when we realized that we would get though the glitches at home, rather than in the safe and sterile environment of the hospital. It was worth it for her to feel some normalcy again (even though our version of normal was forever changed).

Next post I will touch more on "going home". For today, this is enough.

Rayne, I'm glad you're home.