Well, it’s been a nice change of routine to have Daddy home this last week. It wasn’t so overwhelming finally having him by my side again. The constant running and the “just trying to survive the day and waking up to do it all on repeat again and again” was getting exhausting. I finally have a partner to have adult conversations with, the laugh with, to share in the duties so neither one of us is too tired. Not that I don’t enjoy the time that I spend with my children, but watching Teen Titans Go and surfing Facebook for more mature topics to debate and share in was getting monotonous.
Although I did have moments of awkwardness suddenly not being 100% responsible for everything. On several occasions, I would have a mini heart attack when I came to realize that I didn’t load the wheelchair in the truck and must have abandoned it behind only to realize that Daddy was there and loaded it. In the middle of a shopping trip, I would have mini panic attack when it suddenly occurred to me that neither one of my boys was in my possession therefore I had absent-mindedly walked off without them as they sat abandoned in some corner of the store. Whenever I would drive away from the store, I had the eerie feeling that I had forgotten to get Holden out of the shopping cart and must be sitting there all lonely in the cart return and Drew sitting confused in his wheelchair at the curb next to the empty parking spot. Of course, both boys are safe and sound at home with Daddy.
This unfamiliar freedom was uncomfortable for me! But, never fear, I’ve grown accustomed and now enjoy the time I get to wander off by myself. So far, I’ve gone swimming by myself, shopping by myself, went on a peaceful walk, and it’s been GLORIOUS. I feel like Julie Andrew’s skipping through the flower fields in Sound of Music.
Anyways, Drew had his 10th surgery on his legs on Monday (the final leg of this particular journey we find ourselves – pun intended). During the routine surgery, they removed both rods that were previously placed down the bone marrow of each femur and tibia. He woke from anesthesia locked in his new braces and believe it or not, he was scheduled for physical therapy the next day. No break for you!
Drew was in some pain through the day and night and I was worried about PT as he already tends to be stubborn and sensitive to pain, but he blew me away with how well he performed. On day two, he stood up, supported by his therapist as he’s still a little weak from the harshness of this process. On day three, he attempted his first steps, again supported. I am thrilled that he’s come so far so quickly. We also learned that our insurance covers two hours of PT a day (for 30 days) so Drew will be attending 2 hours of therapy five days a week for at least the next six weeks here in Florida. Drew didn’t find that news quite as exciting.
Drew’s pain post-surgery has been pretty typical. Throughout the day, other than immediately after surgery and some mild discomfort during therapy, he’s fine. But, as is always the story, during the night, he has frequent episodes of pain. I don’t know if this is normal or not, experiencing pain during the night, but it’s always been Drew’s normal. Maybe it’s because he does his therapy during the day and normal daily activity and then at night
his muscles relax and/or cramp up. Only a theory. But, regardless, it is the bane of our existence. Even with early doses of Tylenol, it doesn’t seem to get better and the first half of the night is yelling and screaming with a side of major attitude. I have found that my patience has become extremely thin and am finding it harder and harder to remain calm and sympathetic. But, alas, I try to remember it’s only this bad for a week or two so we have one week down.
As anticipated, we have slowly created a list of issues with the braces since receiving them prior to surgery. I expected there would be issues because he wasn’t able to stand in them and really test them out since he had weight-bearing restrictions, though it was apparent there were some non-walking issues with the braces to begin with. The issues ranged from normal issues such as digging into his knee and more extreme issues such as critical body parts that no male wants in danger being pinched by the too-high thigh cuffs and a seemingly outward curvature of his right foot. Most of the issues were remedied with a follow-up with the local orthotist but there’s at least one issue that isn’t resolved with an adjustment to the braces.
After all of these corrective surgeries, it has become apparent that Drew actually does have a limb lengthening difference. It was noticed shortly after removing his final fixator, but didn’t seem to be of any concern right away – not really sure why. Was it a smaller discrepancy back then? I don’t know, but now it definitely is impacting his ability to stand tall and walk with the leaning to the left. So, now I anxiously sit and consider the options and the only options are to let it continue to hinder him and potentially get worse, but oh my god the thought of additional surgery just makes my head throb. I just can’t.
For now, we’re going to get x-rays completed so we can get a prescription for a shoe lift for his orthotist to customize for Drew until we decide what to do. I know from time here with Paley patients that length discrepancies tend to worsen over the years in that the difference in length will actually increase since the short leg doesn’t grow in proportion to the unaffected leg like one would think. So, I guess ignoring it is not really an option like I’m trying to do. But, I fear that Dr. Paley is going to recommend, and be right, that it needs to be addressed before bridges are burned.
As physically and emotionally tough as the process is, both medically and spiritually, it occurred to me right after Drew’s third and last surgery in this current process, that we are almost done. And, while I say it with the relief of “whew! We’re almost done!” I also sadly recognize that “We’re almost done.” It’s almost like we get to live a different life down here. Living in the big city. Living within a bike ride of the ocean (not that we ever get to go, but there’s still something to be said for having an entire ocean at your immediate expense.) Meeting new people every day. Not to mention that after we’re all done, then we’re faced with a 1000+ mile drive back to Kentucky with two kids and that’s enough to make me say, “We’re almost doooooonne….ugh!!” So, after Drew’s last surgery, I did a little solemnly recognize, “We’re almost done.” But, that should only last a little bit until Daddy returns back to Kentucky and then I’m carrying around Drew’s pee again, toting both boys to PT every day, listening to Drew scream and moan, then I’ll be all, “You can do it, Janel…we’re aaaaalmost done!”