From the very beginning of our recent medical journey everything has (in strange ways) changed and moved so quickly. From my original symptom of noticing my ‘drop foot’ while walking downtown, to discovering the results of the MRI, to developing additional symptoms, having the actual surgery, and now the daily recovery process every single moment has changed and morphed reality as we are experiencing it.
So let me do my best to update you with where things are and where they are progressing. The best way I can do this is to first give a quick run down of links to the former stories that might help to contextualize:
Surgery was on Tuesday and I spent that night and the entire next day in ICU for recovery. While I went into surgery with pain, swelling, and some major numbness in my chest, back, and abdomen (the symptoms morphed incredibly over the 10 days leading into the surgery) I came out of the surgery with partial paralysis from my abdomen down through my right leg. My left leg came out of surgery with numbness but in pretty good functioning order and I clearly had back pains and issues due to the surgery itself.
While in ICU I was virtually immobile. I had to have help moving my body in bed, repositioning it for sleep, comfort, etc. Essentially I was pretty helpless–though honestly in great spirits. My great spirits were due to the fact that from the very get go my body was recovering amazingly from the surgery. My breathing, eating, pain level, back scar, and any other general vitals were consistently and shockingly ahead of schedule…to the point that instead of eating ice chips I was consuming Pad Thai in the ICU (thank you friends!).
It was not until Wednesday evening that they finally moved us into the 7th floor suite where we would stay until Friday. It was frustrating to stay in the ICU so long because my children were not allowed into that space, and due to the timing of when they moved me I was not able to see my kids after the surgery until Thursday morning! Being on the 7th floor was wonderful, it was a giant bright room, we set up shop with flowers and notes and all that jazz, and it became home ’till Friday.
If on Wednesday I was helpless and completely immobile due to paralysis and back pain, on Thursday I was free as a bird! Ok…I felt free as a bird…so at one point on Thursday with a walker, a physical therapist holding onto a belt around my waist, and my wife gliding next to me I was able to “walk” from my bedside to the hall way. Singing “Golden Ticket” and channeling my inner Grandpa Joe I walked. It was exciting and I was riding pretty high considering the fact that the day before I was completely immobile. At this point though I still couldn’t get into and out of bed without someone hoisting my leg for me. I was still relatively helpless and motionless, but to know that with help my body was able to do stuff was exhilarating…and so close to the surgery too! So on Thursday I learned that with help I could drag around my dead leg.
On Friday they moved me into the rehab clinic at the hospital. Honestly it was kind of a hard emotional move because not only was it a downgrade in rooms (that 7th floor is posh!) but it meant that I was no longer an invalid, I was no longer a hospital patient–I was in rehab. No IV drugs, no hospital gown, and no on demand movies. But what a move it was! I was wheeled into my new room at 2pm on Friday and by 4pm on Friday I had done about 1.5 hours of both occupational therapy and physical therapy!
Nothing has changed in my right side. My brain doesn’t really know where my right leg is, if I were to close my eyes and attempt to do leg lifts I couldn’t tell you if i were succeeding, I have to be cautious about hurting or burning my leg because I don’t realize its getting smashed or scratched (in my first ‘walking’ attempt Jess had to tell me I was physically standing onto of my right foot!) At the same time, and this is where it gets incredibly difficult to articulate the tactile sensation in my right leg is off the charts. If you bump into my leg wrong I get shots of electricity shooting into my body or if you rub your fingers down my leg I feel as though your stabbing me with needles. It’s a strange blend of hypersensitivity and paralysis that I just don’t get. All of those symptoms have been consistent since surgery without any change–but here’s the amazing thing: my nerves and my muscles are remembering how to do things! I don’t know where my leg is, but with each attempt and exercise my body is remembering where to put my leg so I can walk, lift it, and move it in a functional way. It comes in really small ways, but each day its coming a bit more. Today I walked up stairs with one hand rail. Today I walked around with one crutch all day (awkwardly, but successfully). I maneuver in and out of bed easily now that I have a growing ability to “flop” my leg more successfully into correct places. Each day I am gaining skills that are getting me home–today I shaved. Ok, I know that doesn’t sound like much, but at six feet four inches tall that sink is pretty low and I have to learn how to balance at a sink, be able to reach over and turn water on and off, I have to have everything in certain accesible ways, etc. in ordre to set myself up for success and not fall over due to my right side. Its fascinating and humbling all at once…but my body is getting it. I could go on and on about little details like this (getting on shoes and socks can be quite a challenge!) but the exciting thing is that while my paralysis hasn’t changed (yet) my muscles and my nerves and learning constantly every single day and every single day is bringing more and more success.
At this stage in therapy I still must be attended to at all times (if I dare try moving without supervision boy do I get in trouble), I am still on major pain meds, I am still hopped up on steroids, and we’re still daily trying to see which muscles can function. My body is freakish and grotesque feeling as things are still swollen and distended in places, as my blood thinner shots give me funky rashes every time, as the steroids create marks and spotting, I still wear grandma socks to keep blood clots from forming in my legs, and as I’ve still got random bruising and sores from the needles that monitored all the nerves in my body during surgery. But lets be honest, now that I don’t have a catheter bag strapped to my leg…i’m looking pretty good!
Tuesday is a HUGE…HUGE day, so please know these things that lie ahead of us and be praying with all you’ve got:
- Jess and I with all the support staff here will determine when I get to go home
- Jones and Jessica will be meeting at 10am with a surgeon in Portland to discuss his lymph nodes
- My pathology reports are potentially available (between June 7th-10th)
Grace and peace to you all who were able to read this long update. What an adventure and what a blessing to be able to go through this with all of you by our side.
Did you know that a lifelong undiagnosed extreme fruit allergy will ruin and attack your immune system? It can cause chronic ear infections, wreak havoc on your digestive track (causing other sensitivities to food), and it causes neurological damage (not permanente) among other things. Essentially it messes with your body in intense ways…as if you’re eating poison…which you are.