Friday, November 4, 2016

Trying Times

And it's not political at all. Just after my last post we received word that our youngest grandchild, 13 year old Abigayle, was being transported from Susanville to UC Davis Medical Center by ambulance, a 250 mile trip. Along with a lot of other symptoms, she had lost all feeling below her waist. To be exact; her belly button. My son was in the ambulance with her and had messaged us as they passed through town.

Of course we were frantic. I had a broken pelvis and I couldn't travel to Sacramento. Neither could my caregiver, her grandmother. And now communication became sporadic. My son had little time to sit  down and compose a letter, so we waited anxiously for news.

Finally, we learned that she was in ICU and the many medical teams at this hospital had swung into action for her care. They had installed a Port for the many injections she needed and they had also installed a PICC line to begin plasmapheresis, a procedure that removes antibodies in patients with autoimmune conditions. Another two days went by and it was very difficult to see photos of her trying to smile while under the influence of morphine for pain. They also had a possible diagnosis for her,  Acute flaccid myelitis, formerly described as "acute flaccid paralysis with anterior myelitis" or "polio-like syndrome", is an acute neurologic illness in children with focal limb weakness of unknown etiology.  This is now known as AFM and it is becoming far too common. There have been many new cases on the West coast. Samples of her spinal fluid and blood were sent to the State health department.

Finally, on Tuesday of this week, her grandmother and aunt made the trip down the valley to see her. And her condition was turning around! She was allowed to go outside.She was still in ICU so she had to wear a mask while outside. And an ICU nurse accompanied them, pushing the Super Wheelchair. This chair had a miniature ICU unit built into the back of it. When they first pushed through the door to outside, Abigayle burst into tears. The nurse bent down and asked "Are you crying because you're happy?" Abby shook her head up and down emphatically. With the patient having a smile on her face they took off on what was a one mile trek. Later that night Abigayle reported that she thought she had moved a toe. Progress!

On Wednesday she was given permission to eat a hamburger, which she did as soon as her dad returned from a quest to find the best burger around; not one from the hospital cafeteria. Now that her dad was slightly relaxed, we started to see more messages and more photos. She was (and is) still being given plasmapheresis every 4 hours. This procedure is painless and takes about 2 hours, so you can see that that there isn't much 'free time'. Since it is painless, she reads or watches TV.

Then, on Thursday, she called me! I know that she is 13 years old but she is the youngest and last of the grandchildren, an honor she shares with her twin brother. And since she is, I will always consider her my 'baby'. Due to family strife when she was an infant, I got to be the sole caretaker for her and her brother for about 2 weeks. Dad would come and help after work. So there is more than the usual bond between us.

Now she is on a waiting list to move to a regular room. And she has begun Physical Therapy. Wonderful progress is being made, though the diagnosis of AFM is not a final one and labs up and down the coast are trying to understand just what this disease is and what caused it. Meanwhile, we are simply happy as she gains strength each day.


1 comment:

  1. I'm happy things have turned around for her and hope she achieves complete recovery. I understand the emotional pain of grandparents when their kids or grandkids suffer.