Today was a little tougher than previous days this week. Drew seemed to take a slight step back as his pain level seemed to be a little bit harder to bear for him than the last week. His mood wasn’t quite as cooperative and even though I’m sure it’s normal for every journey has small regressions, it’s still a little discouraging. Drew’s turn might be due to a potential infection in one or more of his pin sites that we are having to closely monitor for spreading redness. Perhaps it’s causing more pain thus a more disgruntled Drew. It could also be that Drew, a once very active boy, has been succumbed to the recliner for two weeks and the walls are starting to close in on him. Or, it could be both.
Of course, this mood swing doesn’t stop with Drew. It’s contagious. I’ve been melancholy and sluggish since this afternoon after Drew’s at-home therapy. Drew was especially uncooperative today during exercise time and it became a battle to determine who was more stubborn. Drew isn’t so uncooperative with Don, his hospital provided therapist, but for us, he refused to do his exercises and it took a long time of him laying alone, with no toys or TV, on his bed behind a closed-door until he surrendered. Though I won’t pretend to know what pain Drew is feeling even a little, to enforce activity that causes Drew pain is as excruciatingly difficult for us too. Drew squeezed my finger and buried his face in my neck and whimpered, “I don’t wanna walk, Mommy.”
Shortly thereafter it was time to do the daily adjustments. It’s a toss-up as to which activity, adjustments or physical therapy, that he hates more. Nathan made the adjustments today and upon hearing him cry and call for me, I went to comfort him and Drew cried, “He hurt me, Mama. He did that.” I felt for Nathan because I know it’s tough to hear. And, of course, Nathan and I don’t like it anymore than he likes it, but in the eyes of a four-year old, it’s betrayal. And, I’m not looking forward to having to go through all of this alone.
With Nathan’s impending departure back to Kentucky for the start of his work shift, I’m starting to get antsy. It’s not even been a full month since we left and it feels like twice as long. Nathan is my closest partner in all of this and even though Drew was momentarily mad at Daddy, I know this trip away from home will be even harder for Drew. It will be harder for me, I know. So, friends and family, please forgive me ahead of time for my barrage of text messages in a desperate attempt to connect with a familiar loved one!
I am currently interviewing babysitters to care for Drew while I work which will help with the loneliness and the stress. But, caring for Drew is definitely a lot more labor than pre-surgery. There is the physical therapy – 30 minutes at home 4 days a week and one hour at the hospital 25 minutes away three times a week, the fixator adjustments, daily shower, the onslaught of medications – so many that we have to document times and doses so we don’t overdo it, and of course, when the time is right I want to incorporate pre-school activities into his day. He watches too much TV right now for me to confess to.
One of our biggest battles right now is Drew’s potty habits. Drew was potty trained and had been using the toilet for the most part. But, Drew’s fixator is so awkward and painful that Drew refuses to use the potty now. And, it’s hard to enforce the issue when it nearly takes two people to get him on the potty, one to hold his leg up and the other to hold onto him and wipe (it can be done with one, but when I did it, I came out sweating, it was so much work.) And, would we be complete jerks for causing him that much pain? But, he’s four, much past the acceptable age to not be potty trained. And, I don’t want to have to potty train him again. But it will be another frustrating battle ending with us being mad at each other and am I really strong enough to consistently carry this through? Sigh….
Anyway, here is Drew’s Week 2 leg. His leg seems to be a little straighter, doesn’t it? Click the image for a larger view: