Lil update up til now...
Sunday night, i went back into CHOP for evening snuggles. I had plans with a couple RMH Moms (okay, one was an aunt, but a very "Mom-ish" aunt!) to go to Chili's at 9 to celebrate Mom's day over drinks and/or dessert/munchies. At 8pm, as i'm in the process of typing directions to Ron on how to get here, I hear gurgling and choking and look over to see Henry throwing up stomach contents. Remember, he had very bad reflux issues before the placement of his G-J tube, which effectively eliminated disturbances in his stomach by pumping his feeds directly into his jejunum (or intestine). The only things going into his stomach are reflux-inhibiting meds. There have been ZERO reflux issues up until this point.
I was definitely bothered by this, for the above reasons, as well as for the simple fact that he's rockin the boat THE NIGHT BEFORE DISCHARGE! I was not laughing. His timing is impeccable (that's one adjective). I cleaned him up, got a nurse in to check him out and together we decided he might have simply been irritated, warm, out of sorts, no big whoop. I was fine with that. Kissed him goodnight, yukked it up with the gals, and called it a night.
The next morning i packed up my room at RMH and checked out and headed over to the hospital. I arrived and the nurse filled me in on Henry's night and adds "oh yeah... and he threw up again this morning. But just stomach contents!" As though that is supposed to make me feel better. It does not. No one can really take these throw ups past face value because all his vitals looked good and he wasn't running a fever. Little sign of any sort of distress.
Ron and Dad arrive around noon and soon thereafter, we are discharged! Henry is flocked by his darling girlfriend nurses, all waving their white hankies (pun intended) and blowing him kisses goodbye. The four of us decided to visit an outside vendor for a bite to eat before hitting the road. Henry's continuous feed was already started, and we were good to go!
About 2 hours into the drive, Ron was sitting in the backseat with Henry and told me that he's throwing up again. Third time now. I am not comfortable with this news at all. We pull over and between Ron and I, take turns wiping up Henry and consoling him. Again, only stomach contents (aka, yellowy, mucousy bile. MMmm....). At this point, while still pulled over, i call CHOP for guidance and speak to the cardiac fellow Mike. He suggests the new environment, air temp and car turbulance all could be contributing to Henry's condition. While he leaves the decision on whether to continue to return to our discretion, he suggests we continue on and just keep an eye on him. So we do that. I mean, afterall, we are HEADED HOME!!! No need to claim self-defeat so soon, right? We had a goal and we decided to continue aiming for it.
Henry threw up once again, now on 'my watch' in the backseat, and just looked so worn out and tired and YUCK. He sounded gurgly and off. He easily appeared to be choking during this reflux, so it was important to set him fully upright, which a carseat does not do. We pulled over again, and in my haste to get him into a more comfortable and safe position (paired with my shaky hands, expressing frustration, unhappiness and anxiety over the events i'm watching unfold during our HOMECOMING!), I pull Henry toward me neglecting to pay attention to the location of his G-J tube and it gets wedged and subsequently YANKED. It cannot come out, due to that Hollister zip-tie get-up attached at his belly, but it can certainly HURT by the pulling pressure. Henry screeched loudly and i realized what was going on before i could quickly react, and through a slew of muttered obscenities, freed the tube and cradled him before checking the damage.
The damage was ultimately done. The feeding tube into his intestine was pulled out at least a half an inch more than the pen-marked dash i had placed earlier. To backtrack a touch: Henry's toes are very good at snagging, and then kicking, various tubing and wires attached to him, and about 2 days after his G-J tube surgical placement, i came in to see that the feeding tubing had been pulled away from it's former flush-setting. Please see diagram above: a very small longer tube (feeding tube into jejunum (intestine)) encompassed by a larger, rubber-y tube (gastric tube, aka, access only to stomach). The larger tube ends right past the balloon in his belly and has tiny holes which allow medicines to be dispensed ONLY in the belly. The smaller tube continues on into his intestines to feed him there, past his stomach. NOW YOU GOT IT!
I showed Ron and we both concurred that might not be good. But we both reasoned that he had been x-rayed the day before and it was determined that even with the feeding tubing pulled out some, the placement was still in the intestine. My accident had only pulled half an inch more. That couldn't possibly be enough to dislodge the placement of the tube, which would mean feeds ending up back in the stomach. HALF AN INCH?!?
Sure enough, 15 min from home, Henry decided to throw up a gigantic amount of formula. This was definitely not a good sign. It was indicative that yes, indeed, a half an inch might definitely have been enough to pull out of the intestine. I had no idea what the starting measurement was, as a guide. Now i'm quite distraught. This has been an EVENTFUL ride home, something no one wished upon us, especially us. We quickly decided to pull into my dad's place right off the exit. I called CHOP once again. Spoke to a different cardiac fellow, Lisa, who Henry LOVES (he smiles the most of anyone with her), and she suggests we stop the feeds for now, just get home and get him settled and calm, start feeds up again at some point, and just watch.
So that is what we do. And all seems to be going well except that at 3:30 am, Henry decided to throw up his feed again, one we had started back up at 11pm. Not good. And he didn't sound good. Or look good. He didn't look the worst I've seen him, but just very washed out and TIRED. Taxed. It broke my heart. This after five days of him radiantly glowing, a vision of vibrancy and alertness, at CHOP. He was basically laying around, super happy, getting a meal. Nothing else. No IVs, no [noteworthy] bradys, no desats. And he LOOKED happy. Lots of smiling, bright, alive, just great. And now... looking at my child in the glow of a closet light, in my arms in bed, looking so tired and needing sleep, gurgly and mysterious... it broke my heart. Through tears i said to Ron, "I'm so unhappy right now." As my friend Katie said later, "you guys can't catch a break." That's exactly it. I just wanted a break, and by that, i didn't mean a party, or time away. I meant a chance to NOT be at CHOP, at home, naturally, and with all three of my boys.
I calmed Henry and myself down and i called CHOP again and spoke once more to Lisa. Through discussions of what i saw and what he was doing, Lisa suggested softly that we go to the ER. I told her that i was in denial of doing what's best and right because going to Arnot hospital always results in a trip to Philly.
But that's what we did. We stopped his feeds, and by 4:30 am, he was being admitted. The reason? 6 throw ups and paused breathing. A home telemetry kit (continuous monitoring of Henry's heart rate and rhythm which takes place at a remote location in NJ and then sent to CHOP for evaluation) that we set up at 11pm tracked only two bradys, but while i watched him, he appeared to show signs of more. Several things were certainly 'off.' Nurses hooked him up to all their stuff, got a couple x-rays (one to determine current placement of his GJ tube and sure enough, it was now in the stomach), some bloodwork and by 11ish was being wheeled to his own room on the pediatric floor.
By 1:30pm, we had a slot in Interventional Radiology's plans to re-place (but not replace) the J part of the G-J tube; push it back in to the intestines and out of the stomach.This required no anesthesia, a big factor in letting us choose to do it here vs. CHOP. The IR doctor let me come in with them due to the short nature of the procedure as well as the non-sterile requirements. I liken his fixing Hank's GJ tube to replacing the drawstring through the hole of drawstring pants. After sportin' a very heavy and constrictive protective x-ray vest, paper hair bonnet and face mask, i watched Dr. Joe (only got his first name) reinsert the J-tube via four gigantic monitors in front of him. He used a guidewire to fish it around where he wanted, including the opening to the jejunum. I was actually following along and understood what he was doing; it felt great to be on-site (Hank was out cold sleeping, btw). I felt good seeing how far he got it in and how he connected it all back together. Super laid back guy, but so obviously a pro at IR work.
Hank's feeds were reintroduced at half capacity to start this afternoon and that is where i left him at the time of this post. Ron is spending the night at the hospital and I came home to pick the boys up from school (daycare) and take them both to get Sam's haircut (Thom is ready but i forgot the "First Haircut" camera, so i had to pass!). Despite the rain and chill, i had such a simple yet wonderful time hanging out with just my boys, doing stuff out in the world. It actually felt a touch ODD for about 10 min at the beginning. Like a newbie. Weird.
I want to say that i feel POSITIVE about things right now. I think the dislodging of that J tube easily caused huge disruptions in not only, obviously, his refluxing, but in Henry's general well-being. If he refluxes, then he never regains his breathing fully, or the quality, and then that can affect his heartrate and oxygen levels. Everything is a cycle with Henry.
Tomorrow is, truly, another day.
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