A BIG Surprise

Drew’s left leg surgery started off very well.  He was alert immediately after the surgery, he was in better spirits and seemed to handle the stress of it all much better than the first.  Then, the adjustments started.  Almost immediately, we could tell that they were much harder on Drew than the adjustments were on his right leg.  Doing adjustments each night was a nightmare including several hours of crying afterwards.  I’ve been saying for weeks that he’s heavily reliant on pain medication and at times it wasn’t doing enough.  We have all been scratching our heads because Drew has been so reliant on his pain medication that he hasn’t gone more than four hours between doses (his minimum allowed) despite the fact that he was more easily weaned off of the same pain medicine during his last surgery.  By this time, on his right leg, he was going 6-8 hours between doses.  His pain level had decreased significantly and there was general improvement in all aspects of his fixator.  But, we haven’t been seeing the same achievements with the fixator on his left leg.

As I said, he hasn’t even showed a single sign of requiring less pain medicine and most of the time the allowed dosage wasn’t enough.  And, it’s oxycodone for pete’s sake.  I’ve never taken oxycodone myself, but I know they sell this crap on street corners and people go bonkers for it.  His dosage was even increased one time past the recommended amount for his weight because it was thought he was developing a tolerance to it.  But, it was barely enough to hold him over for four hours.  His physical therapy hasn’t been going very well.  He’s objections and stubbornness have been much more difficult to contend with this as noted by his therapist.  Lately, his leg has been turning funny colors especially on his heel.  He’s developed this red/blue splotchy place on his heel that has started to spread.  I  noticed this morning that the entire underside of his leg was starting to turn the same.  During therapy, I noticed his foot had swollen incredibly and his foot has just been looking awful lately.  I’ve been giving him extra doses of his antibiotics thinking he was getting an infection.  And, therapy has been stretching and working on Drew’s toes, which he has yet to be able to move by himself, with no improvement in flexion in three weeks.

Drew took his first steps on the treadmill and a harness on Tuesday, walking for over 10 minutes.  Each day, his tolerance for walking has decreased to cutting it short to six minutes and this morning he couldn’t do it past four minutes.  If you read my most recent post, you probably can tell I thought that things were getting worse.  And, it turns out, I was right!

Come to find out today: his foot has been turning THE WRONG WAY!  Yes.  Believe me.  Rewind to about two weeks ago.  Nathan made a casual observation that his foot looked like it wasn’t turning the right direction.   So, I pulled up the picture documentation I’ve been keeping to compare and there was the tiniest little hint it was lower than the previous week, but surely it was because his leg was slightly more on its side last time, right?  Besides, it is way too early to really tell, it’s only been two weeks of adjustments.  We look at  Drew’s schedule and we are studying the strut angles and the directions they are being turned and it does seem odd that this one strut is getting longer because with our limited expertise, it does appear that it would be turning the ring a way we wouldn’t expect it.  But, there are five other struts so maybe you can’t look at them individually because they work as a group, in a perfectly choreographed dance.  So, we blow it off and continue on.  Again, Nathan brings it up.  So, on one of my trips to get a strut change, I ask one of the PA’s (physician assistants) about the struts pointing out that we think this one strut is pushing the ring around the wrong way.  He studies the fixator with the same concentration we put into it, checked all of the settings, and double checked and said everything looked to be fine.  He suggested that there is probably more extension happening than rotation making the angle change and more difficult to compare visually.  So, again, we blow it off.

This morning, during his physical therapy, his therapist said, “You know, every time I look at his foot, it looks like it’s going the wrong way.”  OK.  That’s it.  Now our therapist is seeing the same thing.  Something has to be going on here.  So, I was anxious to get some additional answers at today’s bi-weekly appointment with Paley’s staff.  When asked if we had any problems, I pointed out Drew’s awful looking skin, his extreme sensitivity in his toes, the inability to move his toes and lack of improvement in therapy.  The PA (different one this time) studied Drew’s leg and the schedule, called Dr. Paley in and it’s revealed that his schedule was set up for the right leg, not the left leg. BAM!

All of this time, all of Drew’s worsening pain, lack of cooperation or improvement in therapy, constant need for heavy narcotics, and worsening condition in his leg explained.  How awful to know that this entire time, the last three weeks, we have been turning the wrong way and now must spend that same amount of time undoing it.  Now, the question is, how much longer do we have to make adjustments?  I can tell you one thing, we will NOT be paying for any therapy for the equivalent time it takes to get back to the starting position nor using any additional days the insurance company (who is still debating our case) alloted to us.  Luckily, our schedule as a whole doesn’t change.

We have two schedules: one for the top (above the knee) and one for the bottom (below the knee).  The top one was set properly so we haven’t made any mistakes there and was due to be completed on January 28th.  The one for the bottom was originally (including the fact that it was going the wrong way) scheduled to end at the end of December.  But, now that we have to undo three weeks of adjustments, our new schedule completes January 20th.  So, the good news is we won’t require any additional days of PT than what was already planned.  Whew!

It’s sickening to know that Drew has been in all of this pain this whole time, but it’s such a relief to know that it’s going to get better in the next week or two as the pressure on his nerves is released.  He shouldn’t require as much pain medicine and maybe he’ll start to be able to move his toes and even finally get flexion.  So, as Dory would say, “just keep swimming!”

8 Comments Add yours

  1. emily says:

    That is so sad and frustrating. Thinking of you guys.

    Ps, congrats on the new bun in the oven!

  2. Hayley Wiliams says:

    Janel, after reading your previous post my heart was just broken for you. I had no words to say but you and Drew have been in my prayers constantly. I hate the news you shared today, that is just horrible but at least now you know why things were just getting worse. I hope, even though it will be hard, that things will start to get better and you will start seeing at least a small light at the end of the tunnel. Just hang in there, your a great mom and your just wanting the best for Drew and there is nothing wrong with that. One day he will thank you 🙂 ………..did I read the previous comment right, are you expecting again???? 🙂

    1. drewunarmed says:

      Yes, you did read it right 🙂 I am pregant again. 13 weeks…

  3. Ann Toth says:

    So glad this nightmare is almost over for Drew and all of us. It has been such a frustrating time, we just kept thinking it would get better for Drew and it has just gotten worse day by day. We know he is not an exaggerator for sure now, bless his heart. It just make me so sick to think of the unnecessary pain he has endured for the last two weeks. We love you Drew and admire you so much! GOD bless you!!!

  4. drewunarmed says:

    I just thought all night long how Drew would just desperately moan, “It’s too tight! Loosen it up!!” Ugh…so sad!

  5. Wow!!! I would have said a few choice words at that appointment. I am so sorry to hear that this was going on with poor Drew. I have continued to keep you all in my prayers. When Drew is walking and running he might just need to kick that doctor where the sun doesn’t shine. You all stay safe and happy healing.

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