Copied from an email I sent to family and friends today
Vivian is scheduled to have her port and her g-button removed next Thursday morning, September 23rd at Medical City Children's Hospital. The procedures are not expected to take long and Vivian will go home that day, with little to no recovery afterward except for a pressure dressing to prevent the pocket where the port was located from filling with fluid.
There was some question as to whether we would go ahead and do a muscle biopsy at the same time as the other procedures to rule out or establish if Vivian has malignant hyperthermia. Malignant Hyperthermia is a genetic predisposition to problems with anesthesia that might have led to the high fever and rhabdomyolysis that landed Vivian in the ICU. I really don't think Vivian has MH - believe it's most likely that an infection brought about Vivian's extended hospitalization - and hate to put her through the biopsy unnecessarily because it involves a fairly large incision in the thigh and is very costly. Vivian's pediatric surgeon, Dr. LaNoue, very kindly spent a lot of time on the phone this afternoon speaking to Vivian's pediatrician as well as to the pediatric anesthesiologist who was present for the procedures to insert Vivian's g-tube and then later her port and g-button, and also to Dr. Fanning who was working in the PICU today. The anesthesiologist remembered Vivian (the girl with the fancy bed!) and was comfortable sedating her again without a definitive answer on the MH question, so we are proceeding without the muscle biopsy.
When I took Vivian to the pediatric surgeon yesterday, he couldn't believe Vivian was the same patient he'd seen in the hospital! He was amazed at how calm Vivian was and how clearly and willingly she talked to him. I asked Dr. LaNoue today if he'd mentioned to Dr. Fanning how well Vivian was doing, and he exclaimed, "I've been telling EVERYONE! It's just incredible!"
While we're at Medical City next week, I hope to take Vivian up to the PICU for a visit. I look forward to seeing some of the people who took such good care of Vivian during her month there and can't wait for them to witness for themselves her remarkable recovery.
I would appreciate your prayers for Vivian next Thursday morning: that the procedures go smoothly and predictably and that Vivian handles the anesthesia well. Please continue to pray that Vivian's left elbow regains its range of motion and that her seizures cease.
As ever, Robert and I are deeply grateful for your kindness and support.
"Give thanks to the Lord, for He is good; His love endures forever." Psalm 136:1
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