Today Callie had her regular appointment with Dr. Kravitz, her lung doctor. We consider him Callie’s primary specialist since SMA weakens Callie to the point that a cold can be life threatening.
Fortunately we had no such pressing concerns today, so we talked more about our long-term goals for Callie. Dr. Kravitz is an SMA expert who knows our family well, so we’re always interested in his thoughts.
Dr. Kravitz talks with Callie.
Since Callie’s SMA diagnosis nearly two years ago, we’ve slowly embraced palliative care, which focuses on Callie’s quality of life. We do not want to spend so much time prolonging her life that she doesn’t have the time or strength to enjoy it.
But we also have sought the opinion and guidance of experts at Duke such as Dr. Kravitz. At times we’ve wondered whether seeking care from multiple experts contradicts our beliefs and wishes for her life.
This philosophical dilemma has real-life implications. Should Callie be put on life support if she needs it, even if it’s just for a day or two?
The easy answer is yes, but we also know that she might not come off of a breathing machine very easily once she’s been on one. If that happened she’d spend her last days in a hospital or would have to remain on a ventilator to stay alive.
That’s just one of many similar questions we’ve faced since SMA impacts multiple body systems.
Today Dr. Kravitz said it’s good to at least know all options that are available for Callie. We can always decline any treatment if we think it’s not in Callie’s best interest, he said.
But our focus on quality of life through palliative care doesn’t mean we have to decide we’ll never take Callie to the hospital. It doesn’t require us to stop seeing some of Callie’s specialists.
Instead we’ll be able to seek the guidance of Callie’s doctors and her Hospice nurse — along with Callie herself — as hard questions come our way.
Joy combined with angst. Joy in Callie and angst in knowing what you all know about the decision making delimma. I cannot imagine trying to “be” in that tension. I am encouraged that Callie’s doctor is giving you guys all the information you need so you can be in the role of informed decision makers. There’s nothing I can fathom that would be more difficult than what you all anticipate for Callie and for yourselves. In daily prayers for you all.
Peggy
To choose quality of life is the most amazing thing you will ever do for your family. Making memories in the midst of tragic situations is magical and will remain with you forever. The decisions down the road and questions you’ll have to answer will come to you through the mouth of God. He’ll have all the answers. Y’all are constantly in our prayers, thoughts and hearts.
I heartily affirm the approach you are taking for palliative care for Callie. May God’s love continue to strengthen and guide you each day of your journey.
As believers I know that everything you do is God directed and supported. Praise be to God!
Bless your hearts. We continue to remember you in prayer and thoughts, and keep your family on the prayer list here at church. Prayers that she will avoid colds and other lung problems, and that God will sustain you in all you face. Take care. Love y’all. The Christmas card was precious, and I have saved it – probably will keep it till I pass away!
Ever vigilant with our prayers and thoughts of Callie, the boys, and both of you. Through your example and decision to emphasize the quality of Callie’s life through palliative care, you have provided us all a new view of life of not only ourselves but our loved ones we care for. Thank you for your strength and your sharing, as you continue to help Callie & all of us through your day to day quality of life thinking.
Know that we are thinking of all of you and each day we begin the day wishing for a good day for Callie at Day Care and later with her brothers and Mama & Daddy.
With Love,
Bob & all the Drakes
Wow…..I’m at a loss for words…..I hurt for you, but I also know that God is in control…..He is EVERYTHING. My dad preached a sermon this past Sunday & in his closing remarks he reminded us of an important prayer….”Dear God, please allow me to trust You and to live in Your will. Nothing more. Nothing less. Nothing else.” I pray that the will of God will be so real in your lives and that you will have the peace that passes all understanding. Nothing more. Nothing less. Nothing else.
Our prayers are with you all. Your faith is a real inspiration. Callie is a lucky little girls to have you as parents…
I was at a loss for words and then I read Lori’s post and realized she had said it perfectly.
I will pray right now that the Holy Spirit will continue to guide all your decisions. How difficult. But we hold on to the hope that this life will be swallowed up by what truly IS life. That’s what Jesus bought for us…that’s the hope we cling to. May your family as well as Callie feel the comforting arms of Jesus as you walk through this valley. And may He continue to show you the mountaintop where His grace will sustain you. Sending love, hugs, hope.
Lori