I heard that word today and have to admit it was a new one to me. In fact, there have been dozens of words in the past months that I never heard before; I didn’t have them in sixth-grade spelling; don’t remember them as part of my college education; have never seemed to have them come up in conversation in my 60+ years of life; yet, here we are.

Our medical marathon started yesterday morning at 7 am when we headed to Carle in Champaign for Suzanne’s Lymphedema Therapy. Trying to soften up all the scar tissue in her neck as well as move swelling fluids from her neck. Since surgery removed most of her neck lymph nodes, fluids no longer have the plumbing network available to move the way they used to. Daily exercises, massage, and weekly therapy is supposed to do the trick

Leaving Champaign for home, we stopped for a quick lunch, then on to Chicago to make a 3:30 appointment. Suzanne’s blood work was scheduled to allow her port to be accessed prior to her Wednesday morning surgical or procedure; I’ll explain.

Prior to all her regularly scheduled appointments Wednesday, Suzanne was having her feeding tube replaced for the 3rd time in five months where most people have them replaced twice a year. This one lasted two months; no there’s no warranty. We have learned over our journey that for whatever reason, the Hospital does not access her port for procedures, opting for the more painful process of stabbing her arm, usually more than once because her veins are so small. By doing her bloodwork the night before, we were able to have her port pre-accessed so that the hospital will use it.

In recovery, a funny (not HaHa) look came over Suzanne’s face as she said “I feel moisture” Come to find out, the same port on her new G-Tube was now leaking. The nurse called in the surgeon who repeated what everyone has said about this situation, “I’ve never seen that before”. The solutions that Dr. and the nurse came up with were not acceptable for me so I put the Bruns-O-Matic in gear and said “Got any baling wire” to which the nurse laughed out loud and replied, “My grandpa always said that”.

After a closer inspection, we determined that the little plug was not creating an air-tight seal and in my mind just needed a gasket, the smallest gasket I’ve ever seen. Asking the Doctor if he had any plastic wrap, I shared that I wanted to put a piece over the hole as I pushed the plugin. A gasket was created and it worked.

Next stop, the cancer center to meet with her oncology Doctor and PATHWay coordinator. Since all seemed well after only one visit the PATHWay infusion was on tap. The infusion only takes a half-hour which gave me a chance to eat my Subway BMT.

Our afternoon appointments started with Dr. A’s PA. Since Suzanne’s Trach has been capped for three weeks now without major incident, it was decided to have her decannulated (the process of removing her tracheostomy tube ) And so, by simply unhooking the neck strap, the cannula just fell out leaving an open hole in her neck. Only a small gauze bandage was placed over the hole with instructions to put pressure on it for the next week or so if she speaks, coughs, or sneezes to keep it from re-opening.

Finally for the day, a trip to the Speech Therapist who atually works on swallwoing. He did a scope through her nose to try and watch what happens as she swallowed. Watching the look on her face told me that he didnt’ realize what he was asking or the pain it was causing as tears came to her eyes with every attempt. His final conclusion, things looked good and all that was required at this point was lots of practice.

Exhuasted, we headed home and arrived around 5pm, 34 hours after this marathon started. Not sure we could have crammed much more into this event. As Suzanne continues to heal and gain strength, our visits to Rush will hopefully become a little less eventful.

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us

Hebrews 12:1