Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Tuesday, December 28, 2010

Palliative Care

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,

Kristen

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)

8 comments:

  1. I think what you did showed tremendous courage. You knew what was right for Georgia and you fought for that-you were always her voice, the people who knew her best and you never stepped back and let anyone else make those important decisions for her. I have no doubt what you did was so good for Georgia. Seeing the videos of her at home, what a difference to that in the hospital-you brought her home, you brought her to the place she was most comfortable, with her sisters who I know, still to this day, bring a smile to her face...you did give her life, you gave each day full of love and I am just so glad you had such an incredible team supporting you. I hope if we don't get the segment here that there is someway for us to see it, I know how much you appreciate the pediatric palliative care team you had and I am sending a HUGE thank you to them as well! Love and hugs, Em

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  2. Thank you so much for posting this. I will have to try and remember about this segment. I am so very glad that your last weeks with Georgia were filled with those happy (yet bittersweet) memories.

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  3. When I found your blog you had recently written a post about how when Georgia left this world she was at home, in your arms, listening to a lullaby CD. Nicholas had just been diagnosed and I was searching out other SMA families to connect with. After reading your post, I knew that what you described was what I wanted for Nicholas. When it is his time to go, I hope that he will be at home where he is comfortable and happy-at home with his family. You made the best decision for Georgia, I hope we will be able to make the same one.

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  4. I too think that you are amazingly courageous, and am so happy that you got to have those precious times with her at home.

    I have encountered a few people who are anti-palliative care, and I can think of few things that get me more angry. It is no one else's business how anyone chooses to care for their child, if that choice is made with love (as in your case, where it clearly was). Grr.

    Hugs to you guys. :)

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  5. Our Pediatric Palliative Care team are incredible individuals indeed! We chose to remain in hospital and they were our friends and advocates and always available when we needed them. Just because it makes people angry to think that children can become terminally ill (and it should!) doesn't mean that we shouldn't make their final days as comfortable and peaceful as possible. I don't know what we would have done without Dr. Mike and Simone - they had Nicholas' and Olivia's comfort as their highest priority.

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  6. Courageous is an understatement. You and Mike made a decision thay would affect your whole family and give other families in your position a glimpse of what Palliative chilcare is all about.
    What you did was to bring your family together at a very painful and difficult time in your lives. You allowed Calla and Maya precious time with their baby sister. They loved being with Georgia and are still very close to her. They`ll thankyou for that as they get older. Look at the precious memories you have. Instead of following hospital routines you were able to have family time and create memories. Georgia didn`t die in a hospital, she died in the arms of her adoring mother. God Bless you.
    You are so loved and held close to my heart. You did what was the right thing for you and your family. Thankyou for sharing this incredible team and what they do with the rest of Winnipeg. I`d like to bet that you will certainly help others who watch this program. I hope it airs in Calgary at some point.
    Love you all
    Carol

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  7. I am so, so glad you wrote this and that you are sharing your story and experience with CTV. It is such an enormous portion of the story for diseases like SMA, yet many do not talk about it. End of life is beyond difficult, personal, and something none of us want to face with our children. But I think it is so important for others to know that there are choices with end of life care. Thank you for always sharing so honestly and with so much love. You are an incredible family!!!

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  8. There is so much I want to say to you, but I don't even know where to begin... We lost our daughter in April '09 too, she was born with a fatal syndrome (which was a huge shock as we didn't know about until the day of her birth.) She was in the NICU at Children's in Wpg, and we worked with the same Pediatric Palliative Care Team that your family did. I could never be thankful enough for their understanding, their compassion, and their help in coordinating all the things we needed in order to make memories of our time with our daughter. I would love to chat with you sometime if you are willing. I can be reached at lostforwords09ATgmail
    Thinking of you and your family!

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