This morning around 8am, I got a call from Rebecca, Hank's overnight nurse, telling me that around 4am, Henry kicked his G-J tube out of his belly. You read that right. Apparently, he was a little fussy and Rebecca thinks that he was kicking and his tube got caught in his toes and on a downward kick, BLOOP - right out. Balloon and all. And when i say balloon, i mean the balloon inflated with water right behind his abdominal wall, the balloon whose intention it is to KEEP the G-J tube in place, was yanked right through the stoma (aka, tummy opening) as well.
First, let me clear up: Henry is fine. That sort of 'accident' is not life-threatening or perhaps even overly painful, since Rebecca said that he seemed more agitated and uncomfortable with the placement of a rectal Tylenol for pain then the actual dislodging of the tube OUT of his belly. Whatta little bugger! When i arrived at 9:20, he was sleeping soundly and comfortably, so I let him be.
(Is this too much for some of you? I only share the details because i feel that most of you are empathetic to what we're going through, and truly interested. This is The Nature of Henry, and with it, comes everything he entails. You're living this with me! Up for the ride??)
I called a nurse in to see what they wanted to do. By this time, it was around noon and I was told that IR (Interventional Radiology) wanted to replace his G-J tube around 4pm. I didn't imagine they were too-too concerned with patching/gauzing up this site too extensively since he was going to get fixed up in a few hours. That was partly true - they did want to keep the site dry as best as possible. So two nurses with gloves, and me without, worked around Henry's little belly with tape and gauze and holding the catheter at just the right place so that it wasn't too far in or out. TEAMWORK!
Well, within an hour, he had soaked through that job and was a gurgly, bubbly mess on his tummy. A little puddle of foam was peeking in and out of the gauze. Good Lord. Poor Hank. He was just lookin' around at everyone. At one point, he had a very stern, concerned look on his face. And i said to him, "Don't look at ME that way! YOU'RE the one that got yourself all into this." It's true. He did.
Four o'clock rolled around and i kissed his little head and handed him off to the Team that was to 'put him back together.' In 35 minutes or so, Henry was returned to CICU to spend the night and be observed since he needed some cardiac anesthesia for this procedure.
My friend Katie had arrived by then and the two of us went to Henry's bedside. He was so out of it, very groggy, and proceeded to have a pretty rough coughing fit. His entire head pulsed RED with each cough, like a blinking traffic light. He coughed so hard, the kind of cough that literally takes your breath away and you cannot get it back! I felt so bad for him because i have coughed like this before and its a little scary. You need your air and the cough is not letting you have it. So i sat him very upright in his bed and that seemed to help. They had him all bundled with heated blankets because his temperature was lower than normal.
A cardiac fellow chatted with me and explained that a few of the meds he's on need to be monitored and controlled in the CICU/CCU vs. at home. For one, he's on an IV antibiotic for 14 days (he's only on Day 2, so i'm here a minimum of 12 more days) to treat a blood infection. I asked how he got it and was told that babies who are sick often get blood infections. "Just happens." Also, he's on a drug (I forget the name) that keeps his heart rate at a comfortable level and not as low as Henry often experienced, causing frequent, if not near-consistent, bradys (you've all memorized what that means by now right? Brady=short for bradychardia, or slow heart rate (aka, under 80 bpm for Henry)).
Hank's evening plans were to sleep off the anesthesia and hopefully level off comfortably for all, to be returned to the CCU tomorrow (i was growing quite fond of our solo room right next to the nurses station. I told Henry's nurse Nicole to keep it open for our return.)
Since I've been told that Henry is staying at Camp CHOP for another 12 days at least, I am planning a visit home next week. Ron's got a few days off in a row and that will be super nice!! To see all my men after 2 weeks - - ahhh...
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