Our routine follow-up with Dr. Paley ended up being pretty eventful.  We mentioned that Drew has had a low-grade fever ranging from 99.3 to 100.3 everyday since the surgery to repair his fractured femur so they decided to cut the cast off to take a peek at his pins to ensure there was no infection.  As much as we were excited to get the cast off, I knew that Drew would not handle this well.  When he had his first cast removed with the saw, it was a very traumatic experience for him and even though it didn’t hurt him, he has had a phobia of that saw since.  He’s been dreading that saw since hearing that a cast would be placed so just as I expected, Drew became instantly terrified when he realized what the plan was.   It was over quickly, but at the end Drew’s heart was racing, almost coming completely out of his chest and Nate and I were close to being deaf from his blood-curdling screams.

Turns out his pin sites look good.  I was told the pins protrude the skin, but in Drew’s case, apparently, his skin has grown over top of the pins so they are not visible.  I asked them what the procedure is for removing the pins when it was time and they said they typically just numb the site and pull them out in the exam room, but they would probably take them out of Drew in the operating room since they were not accessible without some digging.  I was relieved to hear that!  I shudder to think of Drew having to watch a doctor come at him with a wrench to yank pins out of his bones.

Celebrating forgotton freedom on a run with Mama and Daddy. Well, Mama didn't so much run as lightly strolled. ;)
Celebrating forgotten freedom on a run with Mama and Daddy. Well, Mama didn’t so much run as lightly strolled. 😉

Recalling that the removable cast was previously very difficult to place properly causing Drew and I a lot more stress, I asked the doctor if we could just use his brace.   It has a locking mechanism to lock his knee straight and it confines his leg into an immobile position so I would think it would accomplish the same purpose of a cast with half of the hassle.  Luckily, they were OK with it.  Nate and I were on the verge of insanity having to constantly scoot Drew back up into a semi-sitting position onto his pillows 578 times a day because he constantly slid on his sleeping bag, even with a non-slip shower mat directly underneath him.  And, Drew was even more excited to be able to sit up straight once again.  He lavished in his newly regained freedom to sit upright and said multiple times, “It’s so nice being able to sit up again!” and “aaaaaah! I can sit up!”

So, with the cast gone, Drew’s finally able to feed himself at his tray table once more.  He’s a LOT easier to carry.  And, Nate (as well I) is relieved that he can relax about me needing to get Drew in and out of the truck by myself which is quite the operation with the cast.  With the cast, we had agreed that I would have no other choice but to put him in the front seat because I would have been able to load him in sideways as opposed to headfirst in the backseat.  But, now I don’t have to worry about breaking laws and will have no problem getting him properly secured in the backseat.

Drew’s adjustment schedule ends on February 5th or very close to it.  I think his leg will be perfectly straight and corrected by then.  It is so close, but it’s not quite perfect yet.  We’ll visit Dr. Paley on February 11th where he’ll confirm his satisfaction with the correction of Drew’s leg.  If it weren’t for the femur fracture, assuming Drew’s leg was perfect on February 11th we would be released to come home.  BUT.  We still have Drew’s right leg to fuss with now and he still has those pins that need to be removed once his femur is fully repaired.  We’ll visit Dr. Paley on February 25th where they’ll evaluate that and then make plans to remove the pin, hopefully in the OR.  I don’t know how long it will take to get him on the surgery schedule and I don’t know if they’ll need to see Drew post-op, but I think we’ll be home early March.  Maybe even very late February.  Being a patient at Dr. Paley’s, you have to learn to be flexible and just roll with the punches!

On a final note, turns out Drew’s heart has worsened still.  The leakage in his aortic valve is worse and they think there is some narrowing of the aortic valve (which would make the leakage worse because it’s like putting your thumb on the nozzle of a garden hose).  So, we’ve been referred to a local cardiologist to determine the best course of action of confirming the narrowing of the aorta, because apparently ultrasound can be tricky.  Most importantly, they want to collect a blood pressure from Drew’s arm (which has only been done successfully once before) and from Drew’s leg (which has always been extremely difficult).  Somehow, this will reveal the state of Drew’s narrowing.  The pediatric surgeon that we’ve visited before regarding Drew’s heart also said that we could be looking at a heart catheterization once the cast is removed (!), a CAT scan, or some type of infusion procedure that I’d never heard of or really understood to further diagnose.  Then it will have to be decided whether or not to surgically repair Drew’s heart again.  They’ve discussed a valve transplant and two different types of procedures to do so.  We’ll have to wait to see what all of the tests reveal and we’ll go from there.

But, poor Drew…just when we think we’re going to get time to relax after Drew’s legs are fixed, it’s looking pretty likely we’ll be getting suited up for heart surgery.  But, really, as stressful as it will be, I will be kind of relieved that they finally go ahead and fix it.  I just can’t describe to you how scary it is as a mother of a child with heart defects.  With the amount of heavy narcotics that Drew takes, the physical toll of so many surgeries and the labor of physical therapy, I constantly worry about Drew’s little heart.  To know that it’s compromised feels like it’s a ticking time bomb.   You can literally see his heartbeat through his skin, even at rest.  If you look at the place where his rib cage peaks around his diaphragm, even when he’s sleeping, you can see his skin expand and deflate with the rhythm of his heart.   Placing your finger on this spot, I don’t know for sure, but I would think it feels very similar to placing your finger directly on the heart.  It’s scary to have to medicate your child with two different medications to keep his heart in good condition while watching him go through so much pain and stress.  It will be a relief when I don’t have to think about it anymore.  So, we’re going to see a cardiologist here in WPB on February 6th and then we’ll figure out where to go from there.

Finally, here’s a picture of Drew’s leg progress…left off a month!!! Argh!!  Like I said, we have a little over a week left before it’s perfect (I think), but this is after 10 weeks of adjustments.  His right leg took 11 weeks so looks like it will take an equal amount of time.  And, I didn’t get the first view because I didn’t want to cause any Drew pain in his right leg by lifting it to clear the view:

drew left leg progress jan 29 10 weeks

I forgot to share a picture of Drew’s femur fracture.  Check it out:

What you think is Drew's kneecap is actually the bottom (joint) of the femur bone.  Drew doesn't have kneecaps on either side in fact.  The fracture is the white line that appears where the ball of the bone slipped down.
What you think is Drew’s kneecap is actually the bottom of the femur bone. Drew doesn’t have kneecaps on either side in fact. The fracture is the white line that appears where the ball of the bone slipped down.
This is an x-ray of Drew's leg in the cast with the two pins that were used to fuse his bone back into place.
This is an x-ray of Drew’s leg in the cast with the two pins that were used to fuse his bone back into place.


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