On Thursday evening here on CTV news they will be running a piece about pediatric palliative care. Most people don't like to hear the words pediatric palliative care and some get quite riled up when they hear the words. People seem to think that the minute that you accept care from the Palliative doctors you are giving up. When children are involved this makes people either super sad or super angry.
The truth of the matter for us however, is that the pediatric palliative care team here in Winnipeg stepped up when no one else would. They listened to us. When I say they listened to us I mean they listened to us. Once they had heard us they took immediate action. The hospital staff at that point seemed unsure as how to proceed. Their solution seemed to be that we could just stay in the hospital until Georgia died. Given that she was bipap dependent that meant that she stayed in the PICU. That would have meant that I would also have stayed in the PICU and our family would have remained apart. Of course, at this point we had no idea how long that would be.
Georgia was never happy in the hospital and she was no longer showing any signs of improvement. The doctors had stabilized her as much as they could. Dr. Mike and Simone showed up within a couple hours of Georgia's SMA diagnosis and had us home less than 48 hours later. Our city is a small one and we were told that children almost never leave from the PICU to go home. It's just not done. I believe that we may have been the first family to ever take a child home that was bipap dependent.
We did not bring Georgia home to die as many people think. We brought her home to live. The palliative care team worked alongside us to make sure that we had everything that we needed and most importantly our daughter was HAPPY! Bringing Georgia home allowed her to be with her sisters. She was able to sit in her swing or lay on the floor. She was constantly entertained. It allowed us to celebrate her half year birthday with family and friends. It allowed us to read bed time stories to all three girls and let Calla and Maya say goodnight to their baby sister everyday. We were able to sit down to meals together too. It allowed Mike and I to sleep in the same bed drawing strength from one another even as the machines beeped.
The two and half weeks that we had at home with Georgia (post diagnosis) are some of the best in our lives. We have so many incredible pictures and memories! It was also the hardest time in our lives. We were still reeling from the diagnosis and constantly worried about what may happen. Our friends from Palliative Care were always there. They would often show up within minutes of a phone call. They were often our only light on the darkest of days.
We know that not everybody would choose to bring home their terminally ill child. There are many contributing factors to making a decision like that but in the end it was the best decision for our family and it happened because of the incredible staff here in Winnipeg. We are honored to be a part of their story on Thursday night and hope that it may shine even a tiny ray of light into someone else's darkest of days.
Love to you all,
PS The story will be part of the 'Small Wonders' segment on CTV Thursday at 6:00.
Edit: here is a link to the CTV video online (click Play on the palliative care story)
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