"A dream is a wish your heart makes when your fast asleep." I wonder what kinds of things fill our sweet girl's dreams. When we were at Disney, Sophie Kate's fairy godmother told her they would have tea parties together in their dreams.
I hope dreams of our time at Disney fill my girl's healing sleep each night. Those 7 days we had at the "happiest place on earth" have grown so special in my memory as we have endured the last two weeks. Her health there was such a blessing.
Today marks two solid weeks that we have waged battle against metapneumovirus. Four days on a ventilator is four too many and even though I understand it's purpose as a nurse for my patient, it was devastating to see her that way as her mother. I know that place by her bedside so well...there are so many emotions there and such a feeling of helplessness. We have been at her bedside in the NICU, through multiple inpatient stays at Children's Hospital, on our knees beside her bed at home and now in the PICU...so so difficult.
Last Tuesday Sophie Kate was taken off the ventilator. She did so good, she is so strong. She looked so relieved to finally have that breathing tube out. Her numbers looked good and her breathing was calm and even. She was off to a great start. The breathing tube had served its purpose, she was rested and her lungs had been given some time to rid themselves of that awful virus and to heal.
There were no sweeter words I could hear than when the doctor came in Wednesday morning and said, "You are going to be in that very small group of people that have been discharged straight home from the PICU." Really? Who gets to do that? That feeling was almost as good as the morning they took her breathing tube out. Our girl is so strong, she amazes me.
Upon discharge, Sophie Kate's O2 saturation was the best it has been in years, like 99-100%. By the time we got home and I got her inside and hooked up to all her equipment, her O2 sat was 88%. I couldn't believe it, it couldn't be right...but it was and that started 3 days of continued struggles and phone calls from doctors.
Sophie Kate has atelactasis which is a big long word that means there are pockets/areas of her lungs that are not inflating properly, not getting proper blood supply and therefore not perfusing O2 well or even at all. It showed up on the X-ray that was taken after her breathing tube was removed. It was not a surprise to the doctors after being on a ventilator for 4 days and having metapneumovirus. This, the doctors say, is where her recovery begins. The virus has done its worst work and our girl is still fighting.
Sophie Kate did so well coming off the ventilator that I was convinced we were on the upswing. Coming home and watching her struggle has been discouraging. She can't sit up for any length of time or lay flat on her back without her O2 sats dropping into the 80's (normal is 95-100, but 93-100 for SK). She spends most of her time laying on one side or the other and even then at times the best we can get are low 90's.
We are home though and that is no small thing. Here is where we can heal...all of us all together. Sunday afternoon was the best my girl has felt in 2 weeks. I have been looking for that smile of hers every morning for 2 weeks and Sunday afternoon I finally saw it. Hours after seeing her smile her numbers were down again, but she smiled yesterday and she sat up yesterday longer than she has any other day. Recovery continues here every minute, every hour and every day.
We are carried by your prayers and we ask that you continue to pray as our girl continues to heal. I know full well that prayers have been going up for us when we were unable to even speak through our tears. We are supported in such a neat way by our family, friends, church and community. God's people are about meeting needs and you are meeting our needs both physically and emotionally. Saying "thank you" is not near enough, your kindness will not be soon forgotten. We are comforted by you.
Sophie Kate is in the hands of her Creator, the Great Physician. She has been His from the beginning and her story is still being written to bring glory to God. We lean into Him and pour our hearts out to Him. In the shadow of His wing we find protection and healing. He is in the hurt and He is in the rejoicing, we find Him in both places and we have a relationship with Him there. Our pain, her pain is not vain...God work through us so that others see You and only You.
Romans 8:18 "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."