Callie’s oxygen saturation level started falling right after she went to bed Monday night. Within a few minutes it was clear that she was in distress and there was nothing we could do to help her. We called her pediatrician and then rushed Callie to our local emergency room, which is only a few blocks away.
When we arrived Callie’s pediatrician had already contacted the hospital staff with instructions for her immediate care and to make sure she was transferred to Duke University Medical Center, whose staff is much more familiar with the fragility of children with SMA.
Callie arrived at Duke via helicopter at about 3 a.m. Tuesday. She is still in the pediatric intensive care unit right now, but her condition has stabilized. She is undergoing aggressive respiratory therapy on a regular schedule. Chances are she has only a cold or another kind of common upper-respiratory virus, and although we were able to keep her in pretty good shape at home for five days, by Monday night she was apparently too tired to maintain her blood-oxygen level, even with our help.
We’re grateful for Callie’s pediatrician, Dr. James Anderson, who guided us and advocated for Callie late Monday night and Tuesday morning. We’re also grateful to Sandy Franks for spending the night with our boys and taking care of them Tuesday, all on very short notice.
We’re hoping Callie will not have to stay in the hospital beyond this weekend. But when we get home things will be different. It seems that a bipap machine will play a much larger role in Callie’s care. Callie had a good experience with bipap during her long hospitalization this past winter, but we have rarely used it at home and never while she’s awake. It’s also possible Callie will need professional nursing care at home.
We’re taking things day by day and, as usual, trying not to think so much about the future. Rather than focusing on what she’s losing we’re thinking about what she has: a charming personality, a desire to enjoy life, a purpose to fulfill and a family with a tremendous support network to help her.
Dear Lord,
I pray for this whole family. I’m at a loss for words, but I know that as we pour out our praises and concerns to You, You hear us and answer accordingly because You hear our hearts. Give little Callie a strength that comes from a a place beyond her physical limitations. Give her parents a trust in You that goes beyond their limited vision and vacillating emotions. Give her siblings peace and contentment as they are lovingly being cared for by friends. Do only what YOU can do in this, and that is to work it all together for good for the Golden family. Uphold them by Your powerful hand and give them hope amidst the storm.
Give Callie’s body responsiveness to the meds and the procedures and help her to rest and heal in Your care.
Amen.
(love to you Christie…keep the truth of His word at the center of your thoughts <3 )
Such a beautiful precious child who is enriching your lives. Everytime I see her picture, I think of how beautiful she is and how those brothers must love up on her and protect her.
As always, I’m anxious to hear from y’all and am praying for all.
I love your last paragraph! How true of Callie that she brings joy and has definitely been sent by God to us for a very special purpose. One look at her face brightens my day and I only know her from a distance. What a precious gift of God, given to two insightful and spiritually mature parents! May God’s richest blessings be yours in abundance!!!!!
Praying for you always and loving on you from Peru. So wish I could be close to you to help you out. Know that you all are in my heart every day. Will have my mission teams praying for Callie and the whole family as they come and go this summer. Love you…
Praying for all of you. I’ll will contact Sandy Franks to see if there is anything I can do, whether it is food or errands or anything at all.
Sending you guys positive thoughts and prayers. Is there another mealtrain program set up for you? If not, please email me and let me know an evening I can bring by dinner. If there is anything we can do, please let us know.
What a tense and frightening time and how great that things fell into place from the ED in High Point to Duke. I am so thankful for the efficient responses Callie and you all received. Grateful for those physcians too!!Will wait for more up-dates when you all can manage to send them. Love and light be around you all.
Peggy
Praying for all of you. We used Bayada with John when we needed nursing care. Tried another agency but was not pleased. That was 7 years ago.