Today was the all-important meeting with Dr. Quinlan (Google him.You’ll be impressed.) We were collectively holding our breath in anticipation of this appointment. The tension between wanting to know and not wanting to know has been exhausting- especially for Dad.
Dad had a bit of an entourage for his appointment today. He had 2 EMT transporters, Mom, Tim, myself… and Frank -- a welcome addition to the group. He is one of Dad’s regular Respiratory Therapists at Drake. Having him along was quite comforting. He and Dad have an easy rapport. His gentle, “Hey Buddy,” when entering Dad’s room is a genuine reflection of the familiar team they have become. Because Frank was with us, we: (A) had enough oxygen for the entire visit! (He brought along extra tanks!), (B) he was able to inflate/deflate the cuff on Dad’s trach to allow him to speak outloud instead of spelling via laser, (C) explain the respiratory treatments up to this point, and (D) hear the Dr’s recommendations for ongoing respiratory care and adjust the orders as needed. The only person who performed better than Frank was Dad himself!
Dad amazed us all with the range of motion and sensation that he was able to show the Drs! From head to toe he showed (at least some) movement!! He lifted his head with ease and was able to push it against pressure. He shrugged his shoulders and flapped his elbows. He even moved his ring finger slightly!
On his lower body, he abducted his hips and was even able to move his feet in a slight but obvious “stepping on the gas” motion! (There was some initial question as to whether or not this was happening due to hip movement, but then Dr. Quinlan examined him and said it was definitely happening from the ankles).
The Drs were equally impressed by his ability to detect sensation. With his eyes closed he was able to tell them where they were touching. He was also able to detect sharp/dull movement (As tested by touching him with the smooth side and the sharp end of a safety pin! Ouch!). Also, with his eyes closed he was able to detect if his finger or toe joints were lifted up or down.
Initially, Dad was assessed by 2 Residents of Dr Quinlan: Dr Wrigley and Dr Swanson. Entering the room a bit cautiously, they had obviously spent a great deal of time reviewing Dad’s chart and asked very informed questions about his history. They knew the details and were even able to identify recent changes in his medications. They had reviewed the EMG performed by Dr Quinlan last March and based on those results they were expecting to find a patient with limited sensation and movement. They appeared very pleased with what they found. Some of the direct quotes that I was able to write down…
‘We try to project a general pessimistic picture…when we came in we just hoped to see what we are seeing.”
“He is greatly improved. He is shrugging - that is hopeful!”
“We have good hope he will retain extremely good function.”
“Big Improvement!”
“We are encouraged.”
They emphasized that at this point it is “about surviving our care” and that there was no other treatment or remedy that we should have tried or should currently pursue. “It is about the low tech stuff: keeping his bowels moving, changing his position frequently, providing oral care, preventing infections.” This made us continue to appreciate the excellent care that he has received from the staff at Drake!
When Dr Quinlan entered, he agreed with their physical assessments, performed a few more tests of his own, and was able to flesh out a prognosis and plan for the future. (Interesting to note - Dr Quinlan is the only medical professional to see him at his worst (NSICU at UC) and to currently be following him.) He stated, “His facial, shoulder, and arm movements are looking better” that he had "Good strength in his shoulders and elbows” and that he “Wouldn’t be surprised if he regains his grip.” He believes that he will regain good knee movement but that he will likely need “permanent lower leg support like a walker and/or ankle braces.” He revised his initial 9-12 month time frame (It was 9 months ago today that Dad showed his first symptoms) and said that we will know more about the “ultimate best outcome around the 12-18 month mark.”
We spent a great deal of time discussing weaning. His recommendation is that he have “no active weaning for the next 6 months.” He said, “Anxiety and air hunger are accurate measures of where he is.” His rationale was that until the nerves to the diaphragm are reconnected that it is a fruitless effort. He recommended that instead of his progress being measured in “hours of wean time” that instead, RT measure “vital capacity” and “NIF scores” (Negative Inspiratory Force) every day. This was the most “controversial” (my word) recommendation of the consultation because there is always the pressure to “perform” (also my word) for insurance approval. Also, Dr Quinlan admitted that he and the pulmonologists disagree on this point because they are “looking at this from 2 different starting points” and admitted “We are often on the outs.”
He was able to "pull some strings with Martha” (the MA) to get her to perform a mini EMG right then. He wanted to test if there was any “myelin reversal problem” or “if any connection has a conduction block.” She tested points on Dad’s feet and left hand. The results will be reviewed by Dr Quinlan and sent to Dr Krause. Poor Dad reacted by jerking his upper body with each electrical jolt. Painful.
Dr Quinlan stated that he wanted us to follow up in 4 months (appointment made for late April) It was a great comfort that as he was leaving the room, Mom said hopefully, ‘So we have a neurologist now?” and he gave a thumbs up and said, “You have a neurologist.” ;)
I wish we could say that the day ended on a high note, but with all things Guillain-Barre related, the hope was followed by more painful procedures. Last week, Dad was running elevated temperatures and it was believed that his PICC line was infected. Unfortunately, due to the “thinness" of Dad’s blood, the risk of bleeding overrode their ability to change that line out. Instead, they managed the infection with antibiotics and waited until after his safe return to the unit today to attempt to switch it out. We received a text from Mom tonight (on our return trip to Fort Wayne, IN) that said that after attempting to replace it for 2 hours they were unsuccessful in getting it placed where it belonged so they were going to x-ray and attempt to redo tomorrow. This made an already eventful, high stress, rather physically painful day for Dad (and Mom!) even longer.
One rather marked change in Dad this visit was his return to pondering his “purpose” and God’s plan. He has renewed his desire to know God’s plan and pursue it. I believe that this, more than any of the amazing physical maneuvers he demonstrated today, gives the best picture of his health. It is nearly impossible to ponder faith questions when you are sleeping all day, in physical pain, or emotionally distressed.
I considered naming this blog entry “Patience, Pain, and Purpose” (I am the daughter of a preacher; I've heard many alliterated 3 point sermons) but instead I’m going to name this “3rd Quarter” because after that “Half-time (9/18 months) pep talk” I believe that this is the quarter that we pull ahead! We are very grateful to have such a supportive team.
