After a longer-than-expected inpatient stay, Sarah Kate was released from the hospital yesterday afternoon. I apologize for not providing an update sooner but exhaustion and craziness have gotten in the way.
Sarah's dad and I were extremely relieved when we received word from the recovery room that Sarah was not paralyzed following her central line placement, but sadly we would soon come to realize that things were not going well for her. When they called out they had told us that she was in a lot of pain and that once they got that under control they would be transferring her to a room in the pediatric inpatient unit. Upon her arrival upstairs, her pain made for a very traumatic introduction to the floor nurses; but thankfully they knew she was in trouble and acted accordingly. Although it was nearly 11:00 p.m., Katie, a member of Sarah's palliative care team, made an emergency trip to the hospital. It was decided that Sarah needed to be transferred to the PICU where she could receive ketamine and be monitored closely in an effort to lessen her pain. It was an overwhelming night ... terrible hallucinations (from the drugs) and a scary incident when she stopped breathing; but we could not be more thankful for the amazing efforts of the doctors and nurses.
Prior to the procedure, the anesthesiologist shared that he would be tweaking Sarah's special protocol from what had been done when all went so very well in April. He believed that Sarah did not need so much ketamine and said that he would compensate with more pain meds. Given that he was still planning to administer more than 8 times the ketamine he would typically use, we were reassured that it would be alright. He was a fine doctor but hindsight now tells us that approach was a mistake.
Bright and early the next morning, Larry and I made a quick visit to the orthopedic surgeon. It has been decided that I will be having hip replacement surgery just as soon things can be arranged. I absolutely never leave Sarah when she is inpatient, but I was relieved to know that she was in good hands. Brother-in-law Tim came to Sarah’s rescue... She has told me SEVERAL times just how well Tim took care of her while I was gone. Tim also shared what an appreciative patient Sarah is... She never fails to say "thank you" for even the simplest acts of kindness.
Grandpa brought Alice Eloise to see us at the hospital on Saturday. Her love is such a blessing for all of us... There is really nothing better than puppy love.
Since Sarah’s HLH flare in October, she has been having serious problems with hypoglycemia. It was thought that her liver needed to restore its reserve of glycogen, but weeks later it has still been a problem despite keeping her hooked up to her TPN 24/7. So while she was inpatient following her surgery, an endocrinologist was consulted. Testing has revealed that Sarah’s cortisol levels were dangerously low. It will be a few weeks before we know if this is primarily caused by her adrenal glands or her pituitary gland. Sarah was apprehensive about starting the medication as our family has a scary history associated with steroid use; but her doctors explained that there is really no decision to be made as Sarah would not survive if she didn't begin treatment.
It is so very nice to be home once again. I am sure that you will be hearing from Sarah Kate sometime soon, as she always has her own unique perspective on life. Right now she is struggling immensely in ways we wouldn't have anticipated. Please pray that we may soon find the cause of these new symptoms so that we can develop a plan to help our typically spunky little Christmas elf feel like her merry self once again.
God hears our prayers and those of so many of you who are praying for Sarah. We are forever hopeful that He may have a miracle in store for her. Christmas brought us all God’s greatest gift and miracle when our Savior Jesus Christ was born... And it is His love that continues to supply us the strength, faith, and hope we need.
Merry Christmas to each of you. May you, too, be filled with His love.