The Last Big Thing Before Leaving the Inpatient World

As Gabe got closer to a mystery summertime discharge date it became clear that there was one more gold hoop to grab for that would give Gabe his best chance at smoother, stronger motor movement on his left side. It was a gamble and the stakes were high. Gabe was taking maximum oral doses of muscle relaxants Baclofen and Zanaflex to combat excess tone, primarily on his left side. The negatives of the excess tone were it stiffened his left leg so much that it was extremely difficult to send the mental command “bend that knee”, “flex that ankle”, ”swing that hip” and have it get through the stiff unyielding tone without a constant battle. Each step a confrontation between stiff muscles and brain command. The only positive of the excess tone was that it was acting like a “crutch”. The stiff leg muscles would not let him fall. The tone in his left hand and arm made it extremely difficult to get any useful movement to arm or fingers.

What would happen if a new micro dose drug delivery system direct to the spine were instituted? A Medtronics Baclofen pump operation had been debated by the team for months. Would some of brain fog lift as the heavy oral doses dropped off? Would brain messages get through to muscles faster? Would muscles relax enough to not be stiff as a board but still provide enough helpful tone for walking? Would the delivery system also help his left arm or only the leg? OR would Gabe now be so weak that he would be confined to a wheelchair and the pump have to be emptied of Baclofen and kept on standby with saline solution?

Two tests were conducted in April and May that gave strong evidence a Baclofen Pump system would work with Gabe. The first hospital test put the equivalent of 75 micro units of Baclofen into his spinal fluid. Yowzaa! He was relaxed!! Mr. Rubberlegs for two days. Well now we knew it would reduce the tone! But the dosage? Could it be reduced low enough for him and still have the desired effect? Another test two weeks later beginning with the lowest possible dose of 25 micro units was conducted. In two days Gabe was almost totally relaxed in his left leg but it would still bear weight and he could still take steps with Kierie at his side. Gabe then said to go ahead with the operation and his team of physicians and family backed him on the decision.

Kierie departed on a long planned last trip to see her family in Colorado and Iowa while Gabe’s operation dates were up in the air. We all had to fit in her vacation break before Gabe came home in late June. Oh no! After she bought her ticket the operation date was set for the period she would be gone! Not exactly the end of the world. Donna the Mom would stick by Gabe’s side and send daily reports to Kierie. Summer and Mike would visit.

On May 16 Gabe checked in and was prepped for the operation. The surgeon had already explained the placement of the pump (about the size and shape of a can of chewing tobacco). It would be in a spot beneath the right ribs and above the belt line. Under the skin and fascia but above the muscles, anchored in a little pocket and attached in place by silk thread. A catheter line next threaded around the ribs to his spine and enter into the spine at L3. Then it would be threaded up to about T9 if it did not get turned about by hitting nerves. So there would be an incision both front and back at those sites.

A medtronics nurse technician was on hand to load and set the pump. The pump would be checked monthly for proper dosage by external sensors and an injection portal in the pump would allow outdated baclofen to be removed and fresh baclofen added about twice a year. The pump itself would need to be swapped out for a fresh one every 6 to 8 years.
Gabe and his surgeon sailed through the operation together and everything was in the right place. Monday operation, Tuesday bed rest and Wednesday Stan Bowden and Richard Crossman from the Winterport Ambulance Service gave Gabe a friendly ride back to Brewer Rehab.

Then Gabe’s physiatrist began the balancing act of decreasing the oral Baclofen and Zanaflex while increasing the pump Baclofen dosage. Baclofen is one the class of drugs that must be titrated or reduced slowly to prevent serious complications. Gabe had to keep his back as straight as possible for a week so the catheter would heal properly in its place. And 30+ staples were not comfortable. Over the course of the recuperative week transfers from wheelchair to bed went from difficult to easy pre-operation level. Walking with the physical therapist got stronger and by the time Kierie returned yesterday Gabe was ready to walk with her at his side again. I will resume my walking “class” with him today.

Gabes left arm is a little “looser” and is ready for an onslaught of attention by Kierie and I. Mike will be starting a father–son exercise regime developed by Gabe’s physical therapist. And oh so sweet, both Kierie and I notice Gabe is able to respond faster verbally as the oral Baclofen dosage reduces. We have been working on short sentence speech and hearing Gabe talk in short sentence context is giving new understanding to those who speak with him.

Gabe grabbed for the golden ring and got to put it in his bike bag. Benefits are showing up faster and faster. Now as ever, there is a ton of work ahead. His last two weeks at Brewer Rehab will be heavy therapy ones for Gabe and busy planning ones for Kierie, myself, and Gabe.

We are out of here June 13th !!!!!!!!!