With only a week left until the big surgery, I’ve grown to dread this surgery more than I did the first. And, if you have been following my blog you should remember I was at war with myself about that one. But, I anticipate this one being much tougher for all of us to handle – specifically Drew.
He still complains about pain in his right leg and his brace is cumbersome to remove and replace as it is. Now, we are going to add a bulky fixator to the other leg spreading his pain across his body and adding a whole new level of cumbersome when it comes to removing and replacing the brace. I mean, the brace is awkward with its trunk attachment and getting it lined up right. It takes me several minutes, at least two tries, and a lot of patience to put this brace on, meanwhile Drew is screaming like a banshee. How in the world is this going to work with the added difficulty of managing a painful fixator in the mix?
Nights with Drew haven’t gotten any better. He’s still crying and moaning throughout the night over his right leg. Remember how I mentioned earlier that I don’t have the heart to not sleep next to him when he begs and pleads for it? Yeah, well, turns out that I don’t have the patience nor the stamina to go without sleep so despite Drew’s incessant cries, I have been sleeping in my own bed in another room the past three nights. It’s just become too much. After questioning his surgeon about his continued pain, he doesn’t know why Drew is experiencing this much pain on his right leg. It’s so bad I asked for sleep medicine for Drew because his pain medicine wasn’t doing much. It takes an act of congress to get any real and helpful answers from the surgeon so we have yet to solve this problem. Our latest experiment includes a heat pad. Drew likes it, but it doesn’t seem to improve his sleeping.
But, I ask myself, “Why does his pain seem to be so unbearable at night, but during the day there is nary a complaint?” Does he just grin and bear it during the day? Is he merely distracted by activities going on around him that he ignores/forgets about the pain? I certainly don’t think that Drew is faking it. I can’t imagine a four-year old boy sacrificing hours of sleep to get attention. And, these aren’t just empty whimpers. They are genuine and emotional moans. If he’s faking it, then he has a very promising future in Hollywood.
And, next week, it’s going to get worse.
The surgery was originally scheduled for November 15th, but I received a call from Dr. Paley’s office last week to report that Drew’s surgery would have to be rescheduled to November 13th. The problem with that is Nathan and his mom had booked flights to arrive late afternoon on the 13th. They would miss the surgery and I would just hate to leave the premises for even a moment for fear that I wouldn’t be there when Drew woke up from anesthesia. So, an emergency call to Ann got the ball rolling to change flights. In the end, the flights were changed to accommodate the new surgery date, but ended up costing Ann and us an additional $100 or so, even after Delta waived the fees for changing flights. So, now we are expecting them on Saturday. Drew will see a hematologist on Monday for platelet checks and a pre-op the same day. The surgery is Tuesday, but we won’t know what time to be at the hospital for surgery until the pre-op.
In other news, Drew did get to enjoy trick-or-treating for Halloween. Drew went in his wheelchair and we navigated two of the housing communities nearby. It started off slow. As soon as I got off of work, we ventured out but there was nobody to be seen. No trick-or-treaters. Finally, I learned that trick-or-treating doesn’t start until after dark. I’m not in Kentucky anymore! So, after sunset we tried again and there were TONS of kiddos (and, some not so kiddo) running around. Drew and I walked house to house and Drew would say enthusiastically, “Trick or treat or I will suck your blood!” (He was a vampire for Halloween).
One trick-or-treating family that really stuck out to me was a mother and her 7ish daughter being driven door to door in an SUV (assuming the father was driving the vehicle) to trick-or-treat. And, I don’t mean that these people parked at the end of the block and walked the circle back to the SUV. I mean, they got out of their SUV, went to the door, got candy, returned to the SUV, drove 10 feet to the next house and repeated the process. Honest to God. And, to make it worse they happened to be right behind me and Drew. Drew….in his wheelchair. This family was driving 10-feet at a time behind a disabled kid in a wheelchair. These were not handicap people. The mother and daughter looked perfectly normal and surprisingly skinny. I was so insulted and aghast. And, let’s not forget the impact that this has on the environment! Ugh!!! I swear, sometimes I think that our society has no right to live on this Earth or any planet. To think that there are people who think so little about their ability to walk or other basic functions they possess and to care so little about their environment is absolutely infuriating to me. Ungrateful bastards. It makes my blood boil even thinking of it now.
Ok, getting off of my soapbox now…after our trick-or-treating experience, we were on our way home. I was following about 15-20 feet behind Drew and by this time, it was very dark. I had been getting on to Drew throughout the evening to drive on the side of the road as opposed to in the middle and Drew was finally starting to listen. I was looking down at the candy in his buckets when I heard a “thwam!” followed by an immediate scream. There was a mailbox right next to him that was vibrating so I could tell that he had hit it. I assumed/hoped he had hit the mailbox with his wheel or one of the bars of his wheelchair. But, no. He hit it WITH HIS FACE!!! At times, he hangs his right side of his body over the arm to look at his wheels, I guess and at full speed, not paying attention to what was in front of him, he hit a protruding metal mailbox. The mailbox was black, but had he been sitting in the chair properly, he wouldn’t have hit it. His eyebrow was bleeding and he was pretty upset. Luckily, there was a family a house down who got some kleenex for Drew and I held it to his eyebrow all the way home. We were about .5 mile from home so it was kind of long walk when you consider you have a bleeding, screaming kid in a wheelchair. It wasn’t deep enough to need a stitch thankfully. It didn’t officially stop bleeding until the next day so it was evident that his platelets were on the low side. Now, he has a nice little cut on his eyebrow and some scrapes, but surprisingly didn’t bruise. I was half expecting a black eye the next day!
On a final note, I had to customize Drew’s brace which I’m pretty proud of. He has this trunk attachment that encircles his abdomen and is connected to the brace (I guess to keep his leg from going out to the side) and there is some thick padding on the inside. But, I’ve noticed that Drew’s skin has been breaking out on his belly. He has thousands of little bumps and even developed a very dark hefty patch of patechia on one side (pin-point hemorrhages as a result of his blood disorder). The padding on the inside had become worn and frayed. So, I purchased a yard of silk and pulled out my handy sewing machine and lined it with this nice layer of cool and smooth silk. I hope it helps. We shall see!