Well, it’s been a month since Drew’s most recent surgery and I wish I could say that it was in the past and like it never happened. But, the aftermath of this surgery, like the others, has been overwhelming. Sleepless nights. Restricted mobility. Loss of independence. Unbearable pain. Stalled progress and probably regression in abilities. I could go on.
The surgery itself is relatively easy when compared to the weeks of recovery afterward. If only it was just as easy as entering the hospital, the relatively short wait for the procedure to be over, and the routine observation post-surgery followed be re-entering our normal routine life as if nothing ever happened. But, these leg surgeries for Drew have a dramatic impact in all areas of our lives.
The most miserable is during the night. Since the surgery in mid-July, I can count on one hand the number of nights that Drew has rested peacefully. While Drew’s pain is minimal during the day, nights is a completely different ball game. Drew has persistent and intolerable pain at night that renders him screaming and writhing in pain. He grunts and grinds his teeth. This goes on for the entire night, ever hour or so. This, of course, interrupts my sleep as I must try to comfort Drew even if it’s just holding his hand.
Yes, I give him pain medicine before bed in anticipation for pain during the night. But, it doesn’t seem to help. I have to give him doses even through the night. Sometimes he’s gotten as many as three doses of Tylenol a night.
It’s absolutely infuriating to deal with. It’s not that I’m angry with Drew because it’s certainly nothing he can control, but I find myself so angry while trying to comfort him. I’m angry at a faceless, nameless, and disembodied metaphor for pain. I’m angry that Drew has to put up with it. I’m angry that he’s uncomfortable, miserable and helpless. I’m upset because the relentless episodes of pain is leaving me sleep-deprived. The monotony of miserable nights leaves me helpless and pessimistic. It’s so aggravating that the aftermath of surgery is so lengthy and more stressful than the surgery itself.
It leaves me thinking that if things are so difficult now with his pain which renders him immobile that his ability to walk and the range of motion he’s regained through hundreds of hours of therapy is in jeopardy. How much is this going to set him back? Will he immediately begin to walk again? Or will he have to relearn it all over again? I’m just distraught that we’re back at square one.
I just never anticipated how extraordinarily taxing this whole process was going to be when we started this process when meeting with Dr. Paley for the first time. Seven leg surgeries, hundreds of hours of therapy, a dozen cross-country trips, a broken femur, a wrong turning schedule, braces, four casts…it just seems like it’s never going to end. It never occurred to me that it would take this much. It makes me wonder if it’ll ever get easier and stay that way.
Of all of his leg surgeries, I would say this one has been my least favorite. Before this surgery, Drew was walking independently most of the time. He could walk next to me into therapy, around the house and could even walk in his walker while shopping. It was the most “normal” that parenting Drew had ever felt since the process began.
But, now that he’s non-weight bearing on his cast, I have to carry him to the bathroom. It doesn’t sound like a big deal, but he weighs 40 pounds and he has two rigid devices on his legs that bump my knees as they sway and I have the bruises to prove it. Plus, he’s somewhat sensitive to movement so any twist or bend the wrong way and it frustrates him that I was so careless. When dressing him, I inevitably rub the shorts across his knees irritating his stitches causing him to whine. Anytime I do anything to him, it has to be done with the utmost care which makes everything more complicated.
I’ve had to resort to getting us walkie-talkies so I have a chance at doing housework. Because Drew is practically glued to the chair, he’s unable to do ANYTHING by himself: get a toy, turn on the video game system, change the channel of the TV, go to the bathroom, come to me to tell me what he needs, etc. The constant back-and-forth trips between housework and the living room to do the most mundane of things for Drew was getting old and I couldn’t complete the simplest of tasks with the constant interruptions. My patience for yelling across the house was growing thin and not to mention the act was forbidden when baby brother is asleep. The walkie-talkies are a good – and fun – solution, but I can’t wait until he can walk again.
No errand is quick when he have to load and unload a wheelchair as part of the trip. It adds a sweaty exhaustive 20 minutes to each trip, and that’s if we make one stop. And, since he’s non-weight bearing on his cast, he uses his wheelchair everywhere we go. As trying as this process has been, seeing him 100% wheelchair-bound again has reinforced the need for corrective surgery in the first place.
I have exhausted myself trying to keep Drew engaged and entertained. Being non-weight bearing has removed him from a lot of his normal activities. He’s not completing physical therapy during these six weeks and unfortunately, he’s left out of a lot of things other kids enjoy. I do what I can to keep him from having to watch TV all day long, but the only minimal-effort and cheap solution I can think of is strolling around the neighborhood. It’s hotter than two fat rats in a wool sock outside and I’m doing my best to speedwalk while pushing a stroller trying to keep up with Drew in his wheelchair, who – mind you – is complaining about how hot he is. 😐
The fact remains that this is a very difficult process. Nobody can truly understand how difficult it is. Sure, we have good times as evident by many of the photos I share, but that can be deceptive because I’m not pulling the camera out when Drew is having a bad day.
On a more positive note, Drew started first grade this school year. He loves school and was actually disappointed when the weekend came because it meant no school for two days. His class loves him and he, of course, loves them. I can’t wait to see what exciting things this year will bring him. In an attempt to make having a cast just slightly less “sucky”, as Drew would put it, I decided to forgo the “sign my cast” tradition and instead used my creative skill to paint it to look like Iron Man’s leg. A lot of people think that the cast was done that way at Paley’s, but nope, I did that! 🙂
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I understand what you all are going thru. My youngest son had spina bifada. I know very well the bruises you carry. My boys and I endured almost 20 surgeries. If I could be of any help let me know. I wish I had help when mine were young.