A REAL GAME PLAN
Word came late last evening - we have a diagnosis! John had a spinal tap late afternoon yesterday and Dr. Ortega called at 8:30pm with the preliminary results:
John has Guillain-Barre Syndrome (GBS).
This is a disorder in which the body's immune system attacks part of the peripheral nervous system. The exact cause of Guillain-Barre syndrome is unknown, but it is often preceded by an infectious illness and luckily, it is uncommon, affecting only 1-2 people per 100,000. There is no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects such as weakness, numbness or fatigue. For more information, check out this link.
John was started on IVIG treatment immediately last night and is receiving his second treatment today. There have been no side effects. His blood pressure remains on an even keel and he is now less sedated. He is unable to speak, but does work to communicate through squeezing our hands and moving his head.
He remains on the ventilator to assist with his breathing, but will be most likely have a tracheostomy sometime in the coming days.
This recovery process will be long and measured in small increments in the weeks and months ahead. He will need to recover nerve and muscle tone and strength before moving forward on the leg prosthesis.
The greetings and birthday cards are certainly filling our mailbox! Thanks to all of you for the outpouring of care and support. Thanks for the warmth of God's love we feel surrounding us through your prayers.
Jackie,
ReplyDeleteSo good to hear about a diagnosis, finally. Because of my similar journey fighting an auto-immune disorder, I feel I know what John is experiencing both physically and emotionally. Next time you are conversing with him, please squeeze his hand firmly for me, gesturing my love and concern for him. I pray that God will continue to comfort you with his amazing grace, and in doing so, restore a sense of peace to insulate you from your loss. God loves the two of you so much and so do I.