House of Pain

It’s the perfect selfie though I don’t have the energy to take the damn thing, or put any effort into it what so ever.  I’m standing in our bathroom with a towel on my shoulder with Aleck written on it in white, the rings around my eyes are the darkest I’ve seen in a while, and as I look at myself I feel lightyears away from that picture of Craig, and I with Dr. Swaroop post-op, smiling like we just won the lottery.

We were pushing to get Aleck home because he was miserable and we’d had a bad experience at the hospital with a team who didn’t know the best practice for moving him and touching him.  So far everyone else had been stellar, like skilled dancers working together to care for him without exacerbating the pain.  Which is why we were totally shocked to be in the care of trained staff who needed us to show them what to do, which is really hard at 2am when you’ve been in a hospital for 3 nights and have spent most of your time with your face in your son’s face trying for the life of you to calm him down while his diapers get changed.  It was clear by Monday morning that Aleck no longer trusted the staff as he was requesting his mommy and daddy do just about anything anyone else came in to do.  And to make matters worse his pain still wasn’t managed almost 2 days after the epidural had worn off.  So to save his nervous system, and ours, we took him home.  Right away we could see…things weren’t about to get any better.

Since we’ve been home, around 6 pm Monday evening, Aleck truly hasn’t stopped screaming in pain.  He’ll have brief moments of calm, then he’ll start screaming again, then we give him meds and he falls asleep, for about 30 minutes during the day, a bit better than that during the first night.  Our medicinal schedule is as follows:  4ml of Oxycodone, then 2 hours later, 1 mg of Valium and 7.5 ml of hospital grade Tylenol.  Craig is on the Oxy, I’ve got the Valium which has to be crushed into chocolate pudding and the Tylenol.  We’ve been following this schedule since 6 pm Monday and have barely missed a beat.  That also means we’ve been barely sleeping, we’ve traded in our 6.5-year-old for a colicky newborn baby.  When I come back to bed from my shift, he’s up two hours later to start his, and none of these dosings goes gently into that good night.  Nope, we are protesting, knocking the cups of medicine out of our hands, screaming with each wake-up and with each liquid delivery.   Funny, we spent three days in the hospital perfecting the orals, which ones tasted bad – they got turned into pills and crushed, and which ones tasted just fine – oxy was the best of the bunch.  When we went to pick up our scripts we discovered, to our horror, that even though the medicine and dosings were the same, the taste clearly was not and generic oxy just doesn’t cut it at 3:30 am.

On Tuesday morning when it was clear that there was no change in his pain it was time to page our surgeon.  Unfortunately, we ended up playing phone tag with her nurse and we weren’t able to get them on the line.  Last night we couldn’t get him to stop screaming for more than 5 minutes and we knew we were failing in the pain control arena.  This had crossed the line past normal complaining to hysteria.  We called the hospital and spoke with the pediatric orthopedic surgeon on call who reassured us this was not normal and told us to up his oxy by 2ml.  After the dosing I lay in bed, stroking his head, filled with uncontrollable worry.  Was it too many meds, should I give him the valium too, should we just let him sleep, did we do the right thing, will he ever forgive us for so much suffering, will he really forget the worst of it?  During the small period of sleep I was able to coax out of my body I was ravaged with nightmares about Aleck going to school in the full body splint, me being petrified about him walking and falling, meanwhile, there were terrorists trying to come in the school and shoot up the place.  In one moment they shot at me and missed but I played dead, panicked sweat drenching my sheets, waiting for them to leave so I could run to try to save the school.  Oh yeah, I felt ready for the day ahead.

With my heart racing, I jumped in the shower and got ready for the day, calling our surgeon as soon as the phone hours started.  Her nurse called me back immediately and we discussed what was going on.  Should we add Advil to his pain regimen and see how he was doing, after all, he was in a 6 minute moment of calm, or should we just plan to come in at 12:30 for x-rays and see Dr. Swaroop in clinic.  Once minute 7 hit and he was screaming again I chose to bring commit to bring him in.  Now, if you saw the splint you might realize this is a major project.  He’s got a harness he has to wear over him, we have to carry him out of the house perfectly flat and lay him in the back seat of the car while we attempt to strap multiple seatbelts into the harness, all while he’s screaming bloody murder.  We’ve been using sheets as stretchers to get the job done, but we don’t look like two coordinated dancers screaming at each other in our backyard.

For the 30 minute drive to Shirley Ryan, he screamed the entire way.  He quieted for a moment while we checked in and then continued to scream as we headed into x-ray.  Good news is that the x-ray looks terrific.  Dr. Swaroop checked him out and everything looks on target.  His bandages showed no change since they were affixed post-surgery, and the splint was fitting him well.  The one option we had was to saw two slits into his cast to try to alleviate the pressure.  His toes looked great and wiggled perfectly so it wasn’t an obvious solution, but it was the only other card we had to play.  This was brought up to us as an option while we were trying to get out of Lurie, but we were warned it doesn’t always work and again there were no signs of the fit of the cast being the culprit.  But now we had suffered two solid days of nothing but screaming and our insides looked like a ticker tape parade, teeny little pieces scattered all over the city. We came this far so let’s try it out.

Funny enough the sound of the saw, a noise that has made Aleck scream his face off since he was two months old, hardly bothered him at all.  It was one of the first times he wasn’t screaming, granted I was holding his IPad over his head.  She made a slit on each side and pried them open just enough to give him some breathing room.  Then she wrapped an ace bandage loosely around it just so that it wasn’t completely open.  Aleck was asleep the minute we strapped him into the car and slept the entire way home.  Then, once we got home, he slept some more.  When he woke up he was complaining of his tongue, now white and bumpy from not eating or drinking much in almost a week.  This was a good sign.  He willingly took bites for dinner, again complaining which each mouthful, and then asking for large drinks of water afterward.  He had been in so much pain with his foot that he could actually think about other things to complain about.  And all the while, playing with his IPad himself for the first time since before he was wheeled into surgery.  It feels like turning a corner.  Now, if we can keep this up we might be able to start sleeping through the night when he’s nine months old.