I got to Rochester this morning at around 3:30am from Madison where I was at the Coaches Clinic I go to every year. Got the call Thursday night from Sally after she talked to the Nurse practitioner only to find out that the NP screwed up & called her back to fix it, massively unprofessional. After having the honor of speaking at the clinic that I quite literally don't remember what I even talked about, as all I could think about was Zoey, I hung out with several colleagues for a few hours & headed back to the hotel to crash & get on the road early. Couldn't sleep so I hit the road, got pulled over, made a 45 minute wrong turn (should've followed my GPS, reason I have that thing I guess, & a 3 hour drive turned into 4 & half hour tour across southern Wisconsin. Got to RMH in Rochester & crashed, got up at 7 & headed to the NICU to speak with Zoey's surgeon about her liver, gall bladder, NEC, the ophthalmologist, to speak about the eye test & surgery, figure how in the heck the NP made the call she did & make it a point to not have this happen to any other families, & the NICU doctors to think big picture.
It was a weird day of decisions to indecision all the while pressing the issue to make things happen. Got there just as they were giving Zoey her eye drops prepping her for the ROP exam in that next hour and stopping her feedings again. While in that time I started out speaking with her surgeon thinking that the liver biopsy would be happening during the eye surgery that we were under the understanding that would be happening after exam as the eye doc had stated would be 95% most likely be happening in days past. In the next hour between rounds being completed & the exam being done things got re-analyzed by her surgeon & they were no longer of the opinion of the likelihood of Zoey's condition actually being biliary atresia, so much so that they no longer wanted to do the liver biopsy. We pray that this is ONLY TPN cholestasis, as BA is some scary scary reality to deal with. While the worst road of TPN cholestasis is very ugly, her surgeon and NICU team think with the sodium protocol changes & stopping the continual stoppages of her feedings with all the eye test stuff. Then at this point things got a bit weird, as the eye doc no longer was of the opinion doing the surgery today was necessary as her eyes actually marginally improved from earlier in the week, which meant he wanted to put off doing the surgery again & do more tests next week. Running short on sleep & energy I felt defeated & asked to speak with the lead NICU doc so we could have an entire picture painted for the eye doc of everything going on, as it was clear this was not the case for his train of thought. The NICU lead, myself, & the eye doc pow-wowed for about 10 minutes & we all spoke our thoughts on perspective of the situation & I delicately advocated (yeah right haha) for Zoey in the best way possible. At the end of the conversation we concluded that the eye surgery needed to be done today, provided we could get her into an operating room, which unscheduled on a Friday in Rochester is a project. So I waited for a few hours, we got a call out of no where that a room was open & it was go time around 11:30am. 10 minutes later we got another call that an instrument was unavailable so it was delayed, clearly agitating our nurse & the NICU doc. Waited another half hour & surgery was going to be at 3:30. So that starting & stopping was frustrating. Held her for a bit & had just put her back when the Stefano's dropped in out of the blue, which was outstanding timing & was great as usual. The had been on their way to Kansas City for a soccer tournament for Ryan when they got the call that it was cancelled just short of their exit to go to Rochester, so they made the decision to just keep heading south to come visit Zoey & I as they already had the plan to be travelling. We spent another nice afternoon visiting & being with Zoey. Got the update that it was moved up to 2:30 & we all went down in the elevator & up to as far as they'd let us go before taking Zoey the rest of the way for the surgery. I gave her a pep-talk, which was probably more beneficial for me as she's clearly the tough one (must get it from her momma). Got a bit of a surprise that they would be doing both of her eyes, as they didn't want to come back to do the surgeries again later, which I completely agreed with, however hours earlier it was just the Right eye, again par for course. It was really great to have the Stefano's there, though. Jan, Billy, & Ryan made going down to that blasted OR a tolerable experience. I was dreading doing it myself & with how exhausted as I was I knew I was going to lose it. I made it through it & they waited with me for THREE & A HALF HOURS while they did her eye surgeries. I did my best to update people & not go bonkers while the seconds & minutes trickled by. We sat in the NICU waiting room watching Wisconsin blow up my NCAA bracket & other teams helped with passing the afternoon. At a bit after 6 Zoey was back in her room & waking up from the anesthesia & tugging at her intubation tube that they had put in & was having none of it. They decided to extubate her as she had been breathing so well previous to the surgery. They have been giving her some oxygen in the last hour or so as she hasn't been doing as well as she needs to on her own. They'll be putting on a lo-flow tube to help her get through the next few hours & back to par, which their confident she will do. They were impressed she did so well to get out of anesthesia so quickly & breath for the most part on her own. Small potatoes considering.
So, the next week is simple, or at least is supposed to be, which will remain to be seen. She will have feeds restarted tonight at some point at low increment & then amped up as quickly as she tolerates as she was maxed out previous to the surgery. She needs to put on weight & she needs to do it consistently to PROVE that it's not worsening TPN cholestasis or the dreaded BA. So, we wait. We pray & we wait with breaths held, eyes wide open watching, hands steepled, praying this works this time around.
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