Room To Breathe

Since IPad is Aleck’s favorite activity we knew it was bad when he couldn’t play it because of his pain.

For those that missed the video I put up on the Smart Aleck Persin Facebook page, you can take a deep breath, cutting the cast worked and Aleck is doing great.  It took about a day for him to really feel the effect and it’s taken us several days to feel like human beings again.  We were exhausted from all of it.  But the feeling I had when I woke up from a much-needed nap on Thursday and heard the happy, familiar, sing-song voice from my little buddy talking to his grandma was well worth all the pain and suffering…sort of.

We are definitely through the worst of it which is great.  We’ve been weaning him, and us, off of his steady dose of oxycodone, and he’s now on an around the clock Valium, Tylenol, and Advil schedule.  Playing with the times in between we’ve been tracking when he gets uncomfortable knowing that it’s about 30 minutes after he takes his pain meds that he starts to feel better.  This would all be a lot easier if we didn’t have to plead and argue with him over every dose.  The oxy is delivered in between crocodile tears and bone-chilling screams, but the valium deliciously crushed up in chocolate pudding, and the Tylenol and Advil which he’s used to in his favorite yummy grape flavor, also require a lot of convincing.  One of his friends recently had some surgery and her mom asked me how I get medicine in Aleck.  When I thought about it I haven’t had an issue with it since he was in his spica cast after his first hip surgery.  Now that I’m going through it I dread every dosing.  Craig and I have been taking turns doing the overnight medicine shifts so that at least one of us has a decent night’s sleep, the other one getting to enjoy staying in bed longer, but it’s hard to ignore his cries as we repeat our household mantra over and over again, “we need to stay ahead of the pain, stay ahead of the pain, buddy.”  However, at around 5:00 pm every day it almost doesn’t matter when his last dose was, he’s had it.  The complaining starts and doesn’t really stop until we get him into bed.  I think his body has just had it from being on the couch and he’s ready to shut down entirely.

We’ve gotten really good with removing his splint, he’s tolerating sponge baths in the morning, and cornstarch is our best friend once again preventing heat rashes on his skin.  Even though he has to wear diapers he insists on peeing in a cup, and we still haven’t gotten the correct dosing of Miralax in check, which led to 6 diaper changes the other day.  By the time I got Aleck through his routine this morning I was ready to go back to bed.  It really is like having a newborn at home, except he can entertain himself with his IPad, Switch, and TV for hours.

The meal train has been excellent and we are overwhelmed with gratitude.  Thank you all so much for signing up and helping us out with this.  It’s such a huge stressor gone at the end of every day and it’s even better to get a chance to say hi when loved ones deliver in person (we know that’s not an option for everyone).  Here is the link again, we added some dates, and we will be adding in take-out options for those who want to order us take out:  https://takethemameal.com/VCYW9605

If you are interested in coming to see us we are totally up for visitors.  Since we are primarily stuck inside for the summer having people over is almost more for us than it is for Aleck.  Simply call or text Craig at 773-343-7745 and let us know when you want to stop by.  It’s pretty chill in our new place, we still have some unpacking to do, so please excuse the boxes.