Post-op day #2
Toby is tough.
As I spent the past several days at my nephew's side I have become increasingly convinced of this almost four year-old's inner strength & resolve & repeatedly found myself asking where his strength comes from.
Within less than 24 hours following surgery Toby was breathing on his own, with only a little oxygen to help keep his "levels" appropriately high. When I arrived to the PICU this morning, Toby's NG tube was out, leaving "only" a chest tube, an arterial line (an "IV" directly inserted into the artery), an epidural & urinary catheter. The latter was particularly bothersome to Toby, but as long as the epidural was in the catheter had to stay. Even more difficult for Toby were his hunger pangs. The last time he had had anything to eat or drink was Tuesday night & despite his stomach having yet to fully recover, all Toby could
focus on was "french toast." Seeing & listening to Toby, his face creased in a half grimace, his torso wrapped in bandages, repeat time & again, "I want french toast," "I want french toast" was surreal. For Stephen & Mooki this was obviously heart wrenching. After their numerous attempts to explain, cajole, & distract Toby failed miserably, the only thing more present
then Toby's persistent pleas were the pained expressions on their faces, prompting Stephen to mutter, "what do we tell him now?"
As a doctor, I tried to remain objective & explain to Mooki the necessity of a graded introduction of food, starting first with ice chips, then clears (liquids that can be seen through like apple juice), followed by a soft, bland diet, & finally a regular diet so as not to overwhelm Toby's gut, but as a brother & uncle, seeing Mooki's exasperated & pained expression made me feel like running down to the cafeteria, finding the biggest piece of french toast with lots of syrup, & giving it to Toby no matter the consequences. I wanted to simultaneously feed Toby & hug both Mooki & Stephen, but instead I remained cool & logical.
In the midst of Toby's french toast tirade, we were informed that Toby was being transferred back to the POU (pronounced "poo") pediatric observation unit at Sloan. Toby's quick recovery meant that he no longer required intensive care.
Toby's toughness was tested again during the transfer to the POU. An hour and a half into the transfer, Toby was literally writhing in pain because his epidural had fallen out meaning that he was getting no pain medication. Toby was given a
nice big dose of morphine & within several hours, with epidural & urinary catheter out, his stomach grumbling (indicating greater awakening than his uncle the doctor credited him capable of); Toby was drinking milk (not a clear) & walking the halls of Sloan - tough!
Kids with cancer & their families face endless challenges like Toby, Mooki, & Stephen endured today. These challenges test a familiy's resolve, their faith, & force them to repeatedly reinvent themselves. Mooki, Stephen, Yoni, & Toby are all tough, but without the continued support of their friends & family their resolve is not nearly as strong. Please continue being the true friends & support group that Toby & his family have come so much to depend & rely on.
Ed Clark, Christmas Guest
9 months ago