A Day That Leaves Your Head Spinning

Tonight we’re sitting here a mix of emotions as we watch fires in Montecito.  As so much of Santa Barbara is powerless, we actually have more comprehensive news coverage than people there.  The news media doesn’t need to employ too much of the usual overstatement on this one.  It looks ominous.  Lord, please keep our friends safe.  Our family is well out of harm’s way, but we did have to assure the kids of that over the phone.


All of this comes on top of a really loaded day here at the ICU.  As we mentioned in our previous post, immediately after extubation, it became clear that Rudy wasn’t able to move much air through his lungs.  They did a quick ultrasound and are planning to do a more comprehensive fluoroscopy first thing in the morning, but they are expecting they will see that his left diaphragm isn’t expanding and contracting properly, likely because of nerve damage that would heal itself over time, but much longer than the team would like to see Rudy in the hospital.  So, a decision may have to be made for a second surgery to fix the issue.  While this is tough news, the up-side is that we likely have some definitive information the team needed to move forward.  There is no way we could have detected this without extubating him.  So now we know and can address it.


Dan Levi was his trademark self, and spent quite a bit of time giving a thorough explanation and talking us through the issues at hand.  He, along with everyone else, regrets that it’s taking so long, but remains optimistic because Rudy’s heart function is very good.  Issues with the diaphragm and the chylothorax are certainly complications, but not way outside of what would be expected with an invasive surgery like the Norwood.  While he used enough big words to remind us of his medical expertise, his most clarifying statement was refreshingly free of jargon: “Most babies who don’t survive this have sucky heart function from the start, but that’s not Rudy.”  Thanks for laying off the Latin, Doc.  We’ll see you in the morning.


In the midst of this, there was a lot going on in the ICU.  Perhaps just an average day, but I think the length of time we’ve been here has made us more aware of what’s going on with other patients as we know their parents and check in with each other.  We hear each other’s struggles and cheer each other’s victories.


·             Cody had his fourth surgery this month and parents Rick and Nicole are hopeful that this one did the trick.  Their day was capped off by a phone call from Tommy Lasorda wishing Cody the best and inviting him to be his VIP guest at a Dodger game next season (very classy)

·             Cesar got his new heart and is lying in the room next to us recovering well.  We checked on Enrique and Maria and the rest of the family in the surgery waiting room this morning as they had a grueling marathon down there.  They started prepping him at 3am.  Trish and Nurse Katrine heard the helicopter touching down above our room with his new heart at 7am.  They got word things were done around 1 pm and finally got to see him up here around 4pm.  They left the hospital an hour ago in great relief and we hope they get lots of rest.  While they were prepared to wait 5-6 months for a heart, we celebrate with them that it only took three weeks.

·             Baby Logan has made it 36 hours off the ventilator, but his left lung just started collapsing.  If what’s going on in here isn’t of enough concern, Ramey and Brett are from Santa Barbara as well, but much closer to the fires and she’s received word they need to prepare for evacuation.

·             The room next door was prepped for a new baby coming out of surgery this afternoon.  The nurses started covering for each other during the arrival and we kept to our room out of the way.  That tone of quiet intensity was back.  When we left for dinner a couple hours later, my heart fell when I noticed the room was empty again.  They couldn’t have moved the baby to the floor so quickly. 


Life has ups and downs no matter where we are, but a process like this amazes me of how intense these can get.  It seems that every time we try to plot out plans for even a week in advance, we are thrown a twist and need to adjust things.  So, we ask for continued grace to be able to deal with what’s immediately before us and trust that we’ll be able to handle the rest when we get there.


As tumultuous as this place is, tonight I am so grateful for the people who work here and are courageous enough to involve themselves in such extremes for people like us who are struggling through them.  We’re in Nurse Katrine’s care tonight—and I don’t just mean Rudy (amidst everything else, she was just kind enough to bring us tea).  Tonight we continue to pray for Rudy; that tomorrow would bring clarity for his next steps.  We also  pray for those dear to us in Santa Barbara and what they might be facing right now.