We came here yesterday. My head pounding from all the crying. Both of us coming off a couple of days of no sleep with the adrenalin pumping not knowing if this was it with our little angel. The sun bright, the birds chirping and poor Gabby sick as could be. We couldn't bear the thought of Gabrielle going to the hospital anymore. Cooped up in an isolation room with med students, residents, doctors, nurses not trained in palliative care all poking her , suctioning and tormenting our little girl. We couldn't do it to her. So we called over here, and as per our family meeting where we decided to intervene only as much as Canuck Place can. And here we are. Calm, hopeful and getting better. This place is magic. The palliative model where our girl is being cared for in a big beautiful room with big windows, her door wide open where she can hear the nurses talking and laughing, her mom and dad finally rested and relaxed and Gabby being cared for just the way she needs, on her schedule nobody else's.
Yesterday she was given her 'cocktail' of meds to help with her breathing. A steroid, another antibiotic and something new that she's never had but it helped her relax and sleep, morphine. She's still got some fight to go with her lungs still full and on 2 litres of oxygen (baseline 1/4) but I am so thankful we are not here for end of life anymore. The nurses are aggressive with their treatments and I can tell Gabrielle is relaxed and not freaked out like she gets in the hospital.
Canuck Place fills me up with so much hope. Hope is not a long life. Hope is knowing I have somewhere amazing to take my child for her final days where she can die peacefully and surrounded by her family. Hope is knowing I can walk upstairs to sleep if I need to. Hope is knowing I can bring my family here and take Gabrielle outside for a walk in the garden. Hope is knowing I can go downstairs to the kitchen to eat when I'm hungry. Hope is knowing that my little angle is pain free and peaceful even when she is sck. Hope is knowing I can cuddle her without the tangle of lines to different machines. Hope is helping Gabby get better.
My friend Sarah sent me a quote from Winnie the Pooh the other day and I have to share it here.
"If ever there is tomorrow when we're not together... there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you"
I love you Gabrielle. Thank you for more time.
xoxo
God bless you and your little angel! You are all in my prayers.
ReplyDeleteAmy - So beautifully written - You are an amazing mother .
ReplyDeleteYou are all in my prayers.
So grateful you have The Canuck Place. We did not have a place like that, but did have strong support at home and in the hospital from the Pediatric Advanced Care Team (aka Palliative Care Team). I can't remember the first time Amber was put on Morphine, but it was an amazing help to allow her to breathe better. Keeping you all in prayer and so glad you have such a place.
ReplyDeleteLove to you all...your blog is such a place to heal and find comfort for all of us who try to understand and empathize with your struggles and victories...today I pray for victory.
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