Week 5 Update

Forward progress on all fronts this week.

I passed my swallowing test on Wednesday! Only a very small amount went down the wrong way, and I was able to sense it and cough back up right away. The Speech Therapist gave me the green light to start oral intake beyond water. She advised taking only single textures at a time, and sticking with soft stuff; no nuts or chips or granola, etc. So I’ve been experimenting, and have discovered that liquids work the best; the thicker the food, the more it seems to get stuck at the top of my esophagus; my swallowing muscles are still quite weak and somewhat ineffective. So my current goal is to take ALL of my calories via my mouth by Monday the 25th; as of this afternoon, on the 23rd, I am doing that – no food via the stomach tube yet today. I’m trying cheesecake (just the inner part, not the crust), pumpkin pie with whipped cream, chocolate mile (whole milk), yogurt, tomato and potato soup. Once I’m successful for a day or two at not using the G-tube, I will work harder to chew and swallow the tougher stuff

But my primary goal is to be able to have the G-Tube removed by the end of next week – Oct 29th, a month after it was put in. I will call General Surgery on Monday and discuss that with them.

I’m pretty sure my fingers are getting a touch more sensation, but more important, they are getting stronger. I spend HOURS each day squeezing and kneading “therapy putty”, working the specific motions which seem blocked. Today for the first time, I could easily tie shoelaces, and I could, with effort, open a child-proof med container. I’ve got another 4-5 weeks to build up the strength and dexterity to the point where I think I can go back to work.

I will be seeing the Neurosurgeon on Tuesday the 26th, and hopefully will get a plan for cervical collar removal and rehab for my neck muscles.

Today I walked around the VERY HILLY “3 mile loop”, which is sort of like going around the block from our house. It took 65 minutes, but went quite well. I intend to keep walking an hour + each day, and gradually convert some of the walking to running once I get a green light from the Neurosurgeon. I will try to keep up the 6 days/week, one hour a day walk >> run and see how many miles I can get to by the end of the year. No time or distance goals until after the first of the year, at the earliest.

I have not worn the splint/cast on my broken left wrist for at least 3 days now. The swelling is still there, but my function is fairly good. The left arm is a bit weaker than the right, when I do dumb-bell exercises with 3-5 pound weights.

The biggest event of the week was seeing the oral surgeon on Thursday, the 21st. Dr. de la Rosa is awesome, and has some cool computer programs to boot. He was able to show and explain in exquisite detail just what happened to my lower jaw (mandible) The jaw bone itself has a stable “greenstick” type hairline fracture on the left side (just below where my canine tooth would be.) It requires no treatment, and has never hurt, even when tapped with some force.

The real damage is to the alveolar ridge(s), which are two parallel plates of bone extending up from the mandible, between which the teeth are anchored into the jaw. I lost pieces of the front ridge, the biggest being on the right side below the canine tooth, about the size of an elongated nickel. All these pieces were removed at Madigan, and the gum oversewn. And the 8 teeth which were held in place by that bone are gone as well.

He described the strategy for repair. Once I get the c-collar removed and get some neck motion, my dentist, Dr. Baer, will take impressions of my teeth, and then provide me with a temporary plate to make talking and smiling easier, should I choose to do that 😉 Then, over a multiple series of operations, the first possibly being as soon as the end of the year, he will rebuild the bony plates (those alveolar ridges) using either a bone graft from the jaw, and/or some stem cell technology. He will then insert titanium screws into the mandible, to which “teeth” can be permanently attached. He will probably need to cover the base of the implants with grafted skin from my soft palate, to merge with the existent gum tissue.

All this may take over a year, as the surgeries will need to be 3-4 months apart.

So each day brings a new step forward. But I still feel as if I am at the bottom of a pit, and will need months more to get back to the level of function which most people take for granted. I still have to think about EVERY swallow I take. Each time I do swallow, I am reminded of the place where the trach was, which is now a mass of scar tissue causing strange movements and sensations in my lower neck. I need 4 or more hours each day just to get in the calories I need to keep my weight stable at 10 pounds less than where I was when this happened. Every time I use my hands I have to think about how I will move my fingers and react to the lack of feeling in the tips of the index and middle ones. I can’t rotate my head, and must be careful about jarring my neck. Oh, and I can’t drive, swim, bike, run, or sleep comfortably through the night.

I thank God every day that my eyes, ears, brain, heart, lungs, liver, kidneys, GI tract, upper arms, legs, hips and feet are all working perfectly. I just have these devilish unseen issues with my throat, neck and jaw, and now see a way forward for all of them. I hope next week I can report the G-Tube and C-collar are gone, and that I will be moving into Phase 2 of my recovery – rehabilitating my muscles so they can once again handle triathlon training and the demands of medical practice.