In the Hospital

As most of you already know Aleck’s surgery was a complete success.  They had to shave down his femur and attach a metal plate in order to secure the hip in place, but his surgeons are so confident with the results they shaved two weeks off his time for wearing the cast, so instead of 8 weeks in the Spica, he’s only got 6 weeks in the Spica, and believe it or not he’s already 2 weeks down, whew.

I look back at my entries before he went into the hospital and I can’t help but want to smack myself.  Maybe I was just being overly optimistic, or maybe I was just imagining what I needed to imagine to get myself through it, but our experience at Lurie was far from a holiday for anyone.  After two weeks I’m still recovering from the event and have only recent gotten the images out of my dreams at night.

The biggest hurdle while we were there was managing Aleck’s pain.  We knew he was going to be in a lot of pain, the whole reason they keep him for so long is to manage that pain, but I thought our first day or two would be a very drowsy little boy, very doped up, every so often waking up screaming in pain, but mostly sleeping off the entire traumatic experience of the surgery.  I couldn’t have been further away from reality.  It took over 30 hours to manage his pain.  Let me explain what this means.  For those 30 hours he didn’t sleep for more than 20 minutes on average, after each small bout of sleep he woke up screaming his lungs off, sending his blood pressure skyrocketing which then set off multiple alarms in the room.  In order to calm him down I would have to stick my nose right up against his nose, breathe into his face and speak calmly and softly to him.  Nurses would be coming in and out of the room, trying to explain important aspects of recovery, taking take of the cast, etc, and I wouldn’t hear a word they were saying.  My baby was crying and it took all my energy each time to calm him down.  On average it took about 15 minutes to get him calm, then I would sit next to him and stroke his head.  If I removed my hand from his head he screamed, if I went to the bathroom he threw himself into a fit, and I would stay there until he would finally close those eyes and fall asleep.  Then, 20 minutes later, we started the process all over again.

During the course of the evening, since this started at 12:30PM in recovery after the surgery and we were still doing this dance at 2:30AM (keep in mind I had been up since 4AM to get us to the hospital by 6AM), the nurse was calling the doctors constantly, working with me to try and find the right combination of pain medication to get him calm.  I just kept looking at her with desperation in my eyes saying, “I can’t just sit next to him stroking his head all night, I physically can’t do it anymore.”  Craig had gone home, there was only one bed in the room, and one of us needed to get some sleep.  They claimed someone could sleep in the chair, and if that was possible I would have, but as soon as your legs shifted weight to get comfortable the foot rest collapsed, and there goes sleeping.  Finally, at 6AM, the pattern broke.  Aleck was actually sleeping and I made my way to my bed on the other side of the room.  Craig arrived at 6:30AM.  At 7AM Aleck looked awake and Craig took out his pacifier to give him a bottle of water, that’s when all hell broke loose.  We both noticed that his face looked blue, and watched him as his breathing became erratic. Screaming for the nurses, doctors, whoever they could get in our room, I stood there helpless begging Aleck to breathe, as his lips were curling inwards, unable to deliver the oxygen he needed.  It was a Code Blue.

Suddenly there were 25 people in our room running around like a chaotic catastrophe, and someone got the right oxygen mask on him to get oxygen into his lungs.  A nurse grabbed me and pulled me back a bit, speaking calmly to me, explaining who everyone was, what they were doing, and how this was all going to play out.  The crash cart came in and they asked for the parents to leave and I started to scream, we weren’t going anywhere.  The nurse at my arm explained to me that they were preparing a dose of this medication that would reverse the effects of the pain medication allowing him to breathe on his own again.  As Craig and I watched the nurses juggle the syringe we couldn’t help but be struck by how long it was taking to get this medication from our door to our little boy, we were terrified.  Finally they got it in him and he started to cry, a great sign since this meant he was now breathing on his own.  Someone called out to us to come to him and everyone moved as we rushed to our little boy, covering him in kisses, and sticking our noses to his nose, crying, but breathing.

The medication that reversed the effects of the pain medication, reversed all the effects of the pain medication, and after a really good three hour nap for both of us, Aleck was up again screaming in pain.  At least this time we knew which medication to give him, but in a smaller dose.  And again, I couldn’t leave his side without him screaming, but at least he was still breathing.

We spent the rest of the day negotiating with the pain team over the continual dose vs. the dose in the button.  With an infant in pain, the button seemed really stupid.  He couldn’t reach over and administer the medication, and by the time he was screaming in pain it was almost too late to hit the damn thing.  After kicking out any members of the pain team who weren’t on our program, we got the right result, but I still couldn’t leave his side.

In the middle of all of this they are taking CBC’s, large blood draws, from Aleck to monitor his blood cell count.  Because of his muscle disorder it’s very difficult to find good veins in his arms, and even in his feet, though that proved more of a success.  I began to cringe everytime someone came in to take blood, not because I couldn’t watch the process, but because I knew they’d have a hard time and we had to explain his condition to each new person.  We’d watch as they’d listen to us, but then check his arms anyway, and eventually go to his left foot since his right one was completely bound up in the cast.  And since it was so difficult to get him and keep him calm, we knew that with every new blood draw we had a round of intense baby soothing to look forward to.  When they finally stopped doing the blood draws I was so relieved, poor Aleck’s left foot was practically purple.

Originally they estimated we’d be in the hospital between 3 to 4 days, but we ended up there between 4 and 5 days.  Not too bad all things considered, and the most important part is that this is a huge step in Aleck’s mobility.  Without the hip in place his gait would be way off, most likely having to swing his leg around to get any momentum.  And the best part is that we can get the metal plate removed in 10 months if we choose to do so, and it’s our surgeon’s recommendation that we do, so he won’t have a lifetime of TSA dating.  In the end Craig and I were constantly blown away with how brave and resilient our little man is, again such a huge inspiration for us, and his fighting spirit keeps us going even when we find we can barely hold our heads up.