Mal-rotation Fallout

Drew's foot is discolored from the mal-rotation.
Drew’s foot is discolored from the mal-rotation.

We are still shell-shocked upon learning that we’ve only been worsening Drew’s rotation for the last three weeks, bringing even more upon him than imaginable. I shudder to think of each day, following the adjustments, Drew would weep and moan, “It’s too tight! Loosen it up!”  To think that we were basically using a vice to slowly and excruciatingly twist his foot in ways it was never meant to and just sat by and watched him squirm.  I can’t stop thinking how hard these last three weeks have been, the overwhelming emotion and pain.

It was such a subtle change in his foot that it was hard to have caught it any earlier than we did.  Nathan and I had our suspicions which we debunked (mostly – even though we still had the sneaking suspicion).  Even a PA verified that things were going as planned.  His worsening skin condition was easily mistaken as an infection.  But, there was no ignoring Drew’s increasing pain.  I wondered to myself, am I just exhausted from nearly six months of this?  Am I hyper-sensitive because of exhaustion and/or frustration?  Maybe this experience has been equivalent to the right leg surgery and recovery, but it’s just that we’ve been going through it for so long that we are at the edge of insanity.  But, I feel vindicated now, confident in my instincts and observations.  I wasn’t over-reacting or embellishing on Drew’s pain.  I was right. (Why should this surprise me?  I’m always right 😉 )

Yes, we are upset and we dwell on the pain that we’ve caused Drew, but I’m not going to push the issue too much.  I can still be reasonable and admit it was an easy (albeit frustrating) oversight.  It was caught fairly early and quickly addressed.  And, it’s not like we want to throw in the towel and give up on our dreams of Drew walking.  I still respect the staff at the Paley Institute and anybody – ANYBODY – can make mistakes.  However, we will be sure that any unforseen consequences as of yet (such as additional corrective surgery or nerve damage that would have otherwise been unnecessary) will not be our responsibility financially.  So, as long as everything carries on with the same outcome and experiences as is typical, I’m satisfied with how it has been addressed.

I’m looking forward to the coming week as the pressure from the mal-rotation is relieved thus decreasing his pain and suffering.  This in turn will hopefully finally get us to that point similar to that of a month after his right leg surgery where things calmed down and life was relatively good again.   It’s been been a couple of days since the realization, and we haven’t started to see any changes yet.  I hope it’s coming soon!

I’ve been trying to talk Drew into going out and doing something, specifically visiting Santa.  But, each day, it’s been, “I don’t feel good.”  He’s not up for much activity.  Between the daily trips to physical therapy and the pain of the adjustments, he just wants to lay around.  I did, however, manage to convince him to come shopping with me.  I can tell you, ever since I’ve lost my job and my need for a babysitter, shopping for even basic essentials has become very difficult.  I used to be able to take advantage of an hour of slow time and go alone while the babysitter stayed home with Drew, but I’m so unorganized spontaneous that I don’t plan for trips to the store so calling a babysitter isn’t easily done.  But, I did get lucky.  Drew HAD to have bacon so with a suitable bribe (and, you know, bacon is the ultimate negotiating tool) we were off to the store.  I had a couple of other stores to visit to finish up my Christmas shopping.  Drew insisted that we take his wheelchair. I  was reluctant at first because that meant that I’d have to go through the strenuous process of loading and unloading, but seriously, how do you tell your four-year old son, “No, you can’t be independent and do things for yourself.”  As much as I wanted to be selfish, I fought it and off we went with the wheelchair in tow.

Boy, did I regret that by the 3rd time I was unrolling the ramp! Ugh…sweating from the heavy lifting and not to mention that I worry that I’m causing undue stress on my uterus and its resident.  I’ve done many Google searches on heavy lifting while pregnant and from what I can gather, if you are used to the activity, things should be fine.  And, you could say that I’m used to lifting this amount of weight.  But, I still worry.  I always will, I suppose.  Until the baby is born.  And, then, more after that as well, I’m sure.  I worry about everything.

He certainly has the flexibility of a career cotortionist!
He certainly has the flexibility of a career contortionists!

Anyway, I mentioned a few posts back about physical therapy costs and insurance.  If you don’t remember, our insurance benefits cover 20 visits to physical therapy.  We exceeded our benefits as of July 13.  All therapy sessions after that day have been 100% our financial responsibility.  We submitted a grievance to request additional coverage by submitting a letter.  It was denied.  So far, we’ve paid nearly $2,000 for nine days of therapy.  Therapy sessions were originally $250 (I think) per hour and due to our circumstances, the Paley Institute decided to lower it to $187/hour.  Meanwhile, we escalated to level II to push the insurance into allowing us coverage.  We were simply not going to have enough Drew Walking Tall money to cover the rest of Drew’s therapy.  The insurance did end up allotting us 50 additional visits.  But, we need about 100 more in addition to that.

The level II escalation involved us participating in a conference call with a committee to plead our case which I did (Nathan was on a flight back to Kentucky) on December 4th.  Unfortunately, the call occurred during one of Drew’s therapy sessions so it was difficult to follow along.  Drew was hollering for me, crying in pain, while I was huddled in a corner trying to win our  case.  I found it hard to have to explain our situation because I had written two nicely written and descriptive letters explaining the fixator process and the need for physical therapy and I thought it was a pretty open and shut case.  I mean, really, how is an insurance company going to pay tens of thousands of dollars for a surgery and not cover the necessary physical therapy?  Seems really inefficient to me.  It’s like buying a car without doing the proper maintenance.  Sheesh…government, banks and insurance companies.  The bastards.  So, I did my best to explain that, basically, without the physical therapy Drew would lose his range of motion, his muscles would atrophy, we would not achieve the desired results of the surgery, and basically only hinder Drew even more than he ever was.  Between Drew begging me to come back and hold his hand and me just being astounded that the solution wasn’t obvious to the insurance company, I forgot to mention that I lost my job!  DUH!!! That would have been the PERFECT time to pull that card.  But, I didn’t think of it at the time.  Shit.

The team of non-voting and voting members listened to my hasty argument and said they would communicate their decision in seven to 10 business days.  Seven to 10 business days later, today, we got a letter and their decision: denied.  Sigh.  So, at least we got the 50 extra days and our coverage restarts at the beginning of next year and gives us an additional 20 days (whatever visits of the 50 we don’t use this year will roll over to next year).  So, we’ll have to figure out what the cost of any remaining physical therapy will be, determine whether or not we’ll have enough Drew Walking Tall money to cover it, and perhaps plan for some additional fundraising.  We shall see.

I thought it would be pretty cool to start making videos of various tasks involving his fixator.  So, our first one is us doing his adjustments.  Click the picture below to view.


And, here is Drew’s weekly progress on his leg:

Drew left Leg Dec 10

You can see that the Week of November 26th, in the first picture, there is a very debatable rotation of Drew’s foot the opposite direction that what is expected.  When you look at the second in the same row, Nathan his using his finger to hold Drew’s leg in a certain position so we couldn’t really tell if it was an odd angle due to wrong schedule or just a different leg position.  And it’s still hard to tell between week 1 (post-surgery) and the week of December 3rd.  But our suspicions started during this time, but self-doubt and not any clear evidence of anything wrong.  But, if you look at the post-surgery week and the most recent, December 10th, you can tell a definite change in rotation the wrong way.  Ugh!    You can also see the change in the shoe.  The first and second week, post-surgery and November 26th, he used his original shoe.  The week of December 3rd, I took this picture immediately after a shower and hadn’t replaced his shoe.  December 10th shows the newest shoe and it’s changes due to Drew’s toes curling under.  This is the shoe that inspired How Much More?

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