It’s hard to believe that tomorrow marks the one-week anniversary of Rudy’s homecoming.  The week has flown by and we’re adjusting to life with Rudy at home.  Trish mentioned the simple joy of both being at home together without any feeling of being torn.  Some habits die hard–after 27 weeks in the ICU I had to catch myself tonight as I picked up the phone for an evening call down to UCLA for an evening check-in with the nurse.

Rudy’s routine takes some learning and time, with periodic meds and treatments throughout the day that start at 6am and end at midnight.  So it cuts into sleep, but what newborn wouldn’t?  Of course his condition tends to keep us on our toes and has it’s humorous moments.  This morning he seemed more agitated than usual and none of the usual fixes (diaper change, suction, food) seemed to do the trick.  Understandably, thoughts of cardiac complications are quick to fill one’s mind but in watching him chomp furiously a closer examination revealed a tooth poking through.  Considering everything else he’s facing, we tend to forget the standard baby stuff–this might also explain the fever episode on Friday.

We had an appointment with our Pediatric Cardiologist here in SB today which stretched over 2 hours.  It was a bit surreal as our journey with HLHS started there the day after our troubling ultrasound in August.  Hard to believe all that’s transpired since then.  We were very pleased with his thoroughness in having been in contact with the team at UCLA and then doing his own Echo and EKG to get a baseline on Rudy’s function.  It is very important for him to be working together with our pediatrician so they will be in contact on the different medications he needs.  This seemed to be more seamless at UCLA where all the doctors worked on the same floor, but the doctors understand the acuteness of Rudy’s condition and express that it’s important for them to maintain good contact.  Much of what they have to assess is the medications he’s on that stem from the various traumas he’s had (thyroid, chylo, kidneys, stomach and, oh yeah, heart surgery).  The process needs to be careful and measured without too many changes at once to not upset Rudy’s balance.  I continue to be in awe at what Rudy has overcome, but today also made me aware of the fragility of his condition.  He still needs two major heart surgeries whose outcomes can be greatly impacted by minute variances in pressure within certain veins or the function of relatively small valves–all things far beyond our control.  The walk of faith continues as all of this is in hands much greater than ours.

Rudy may not be in the ICU but it seems that sophisticated medical machinery seems to follow him around, as this photo from today’s appointment bears witness.  Not your typical well child visit….

In between getting settled here at home, we’ve been working on a couple slideshows to document Rudy’s journey and all the people who played a part in it.  But Greg, being much more tech savvy (ya think?), got his discharge day slideshow up and posted today.  So grateful to have such a record of a day we’ll never forget.

Check out Greg Lawler’s slideshow here.

Thanks so much, Greg!

We all had a great night’s sleep.  Rudy is experiencing lots of something he hasn’t before–peace and quiet.  Not sure what he’s thinking, but he is calmly looking around a lot in these new surroundings.  He’s breathing well and just drank down his whole bottle this morning.  It’s almost ten and I think he’s wondering why the morning doctor parade (rounds) is late.  Hope they aren’t too sad down at UCLA.

Trish and I are getting ourselves set up here with Rudy’s equipment, medicines and now understand why hospitals throw so much away–much easier to toss things and get a new one out of supply next time than clean and store.  But we’ll get the system down.

We so appreciated Greg Lawler coming down and taking pictures most of the day through discharge, the drive and arrival home–I think some people were wondering if we were famous enough to have a papparazzo running around us and snapping away.  Can’t wait to see the pictures, but he was nice enough to post a great one to get us started.  While you’re at Greg’s site, Livy fans might want to check out his pictures of her ice skating trip.  She’s the one with form like Sonja Henie and teeth like a Detroit Red Wing.  Nice to know talented people–thanks, Greg.

Very tired.  Richly blessed.  Life is beautiful.

Good night, precious friends.

Today has been a fast-paced day and I’m not even sure what kind of time I have to post right now, but so much has happening I don’t want to be incommunicado with all our fans out in Rudy-land.

Today started with a bit of a wrinkle (actually more than a bit of one) when Gwee, our discharge planner, came in and had to tell me that there was NO WAY Rudy could go home on Tuesday.  As there was quite a bit of back-and-forth among the medical teams and the discharge timeline only came clear over the weekend, there were details regarding home health care and equipment that hadn’t been lined up yet and there was little-to-no chance that the agencies, appointments and insurance approvals could be lined up in one day.  Needless to say, I was a bit dismayed hearing anecdotes about patients being kept at the hospital for days simply waiting for all the home care arrangements to be set up.  Over the past six months I’ve learned there isn’t much to be won by griping about or fighting the system–you really just need to do everything you can to get it to work for you.  It would have just been really depressing to have the day we’re waiting for put on hold for something other than Rudy’s condition, but the team here is also not about to do anything to jeopardize the amazing progress he’s made.  They couldn’t let him go home without being certain that a home care agency was in place with all of the necessary equipment, so I had to call Trish to delay her departure.  Bummer.

The sticking point was securing a pediatric home health nurse to get us set up on one day’s notice.  I didn’t know I had “people”, but it turns out I do.  I left a message for our friend Tera (a PICU nurse in SB) and she called back in short order with good information on an agency with nurses she knew well (yeah, Tera!).  One phone call later saw me bounding  through the unit to let Vicky and Anita (cardiac Nurse Practitioners) know that we had an appointment for 4pm tomorrow.  Not quite sure how I did it, but I’ll credit the hand of providence–the discharge folks had called the same agency and had no luck.  Doesn’t really matter–I gave Trish the go ahead to start rolling.

Rudy’s been wonderfully stable all day–he’s doing fine on room air with no oxygen.  In between discharge briefings and demonstrations of my nursing proficiency, the stream of farewell visitors began passing coming by as staff who aren’t going to be here tomorrow wanted to come wish Rudy well.  It was a fantastic afternoon, so Nurse Shelly got me and Rudy set up for a trip to the patio, but this time it was much more simple–no monitors, no oxygen, no nothing.  It took me awhile out there before I realized I could just pick him up and walk around, which is how Trish found us.  You celebrate the simple things, like being able to hold your baby and spin around without having to worry about getting tangled in lines.

Right now it’s well past midnight and we’ve got to try to get some rest, but I’m not sure how much sleep we’ll get–just too much adrenaline and expectation.

Random observation:  The length of our stay here was brought forth in a new way when I encountered Dr. Federman here in the unit this morning.  She was attending the week we brought Rudy into the unit and about to go on maternity leave.  You know you’ve been in the hospital for a very long time when your stay elcipses the maternity leave of one of your doctors…

Stirring reality check:  I was eating take-out down in the basement lobby last night when I was approached by an unfamiliar couple asking me if my name was Rolf.  They went on to say that they had come across Rudy’s Beat in researching treatment options for their own unborn baby and our story had a part in bringing them here to UCLA.  There little girl was born a week ago and is now in the NICU.  In just the brief chance we had to visit before they made the walk off to Tiverton House to spend the night apart from their little one brought on the unique experience of feeling wildly divergent emotions that is part of life in these realms: joy for progress, empathy for another’s struggle, comfort in finding others whose eyes communicate more deeply than words ever could.  Our celebration over our departure from this battlefield is genuine, but at the same time burdened for others who engaged in their own fights.  Hang in there, Shawn and Anna–thanks for saying hi.

Tuesday will be a big day and it’s highly unlikely we’ll get to posting anything, though we may try to give remote updates on status.  In addition to the discharge conferences, we’ll spend most of the day saying goodbye to the exceptional group of people who have come alongside us on this journey.  By way of tribute, we’ve compiled a photo album of those we’ve been able to capture over the last six months.  We can’t say thanks enough!

Team Rudy

(it may take some time to load, but then enjoy!)

This is Rudy’s IV stand.  It is as fine a piece of equipment there could be.  Tall, stable and highly mobile.  I’ve never really pondered the IV stand.  It’s just always been there doing what it’s supposed to do.  It stood by his bedside and accompanied him on every trip for every procedure.  It once bore a lot more pumps than can be seen now–in fact it once was part of a set of as many as three that were arranged around him.  I mention it today because the astute observer will notice that there aren’t any lines that can be seen, because it’s NOT ATTACHED ANYMORE!  For the last week or so, it’s only been hooked up to deliver a few meds, but with the removal of the last pic line today there’s no way to attach it to Rudy anymore.  I think it still has to be in the room on standby, but every chance I get I push it further away from Rudy’s crib.

The team drew the final labs at noon today and after all of the counts (liver, Potassium) were what they wanted to see, the pic line was removed.  There were some strong feelings about this as it had been in around 40 days and Rudy’s had them in a lot shorter than that before they got infected.  There have been reports that our otherwise civil and measured cardiothoracic surgeon allegedly threatened to put a line in one of the fellows if it wasn’t removed by a stated deadline.  I’m guessing with it’s removal that such measures did not need to be taken, but I may just check the common points of insertion during rounds.

Rudy (and his Daddy the nurse trainee) have made good progress today.  He was switched over to room air this morning, so he’s just getting a simple mist blown to the front of his trach.  His 02 sats are looking good.  We’re trying to keep consistent with feeds–he usually takes about 20-30ccs by bottle and then we put the rest through his Gtube.  We don’t want him to mess too long with the bottle and get tired out and we also want to make sure the feeds don’t drag on too long so that there’s good space between them in order to build an appetite.  We’ll look forward to making progress on this at home because, even though we are trying to regulate the environment there are a number of distractions here in the hospital that upset the schedule.

On Monday, there will be some final discharge discussions.  Dr. Dan would like to do a discharge echo on his heart and then there needs to be some coordination on weaning his different medications.  He’s on an awful lot of drugs due to the number of issues he’s had, so there will be some thought given to what needs to be in place with him in the long term. The team will also make contact with our pediatrician and cardiologist in Santa Barbara to insure a good continuity of care.

There has been quite a buzz around the unit regarding Rudy’s progress.  Everyone is truly excited that this little warrior’s sojurn is coming to an end.  There have already been a couple of goodbyes as folks come off their shifts and there’s no denying the emotion we feel about these people who have been so dedicated to Rudy and our family.  I expect there will be a lot more feelings over the next two days.  I can’t wait until Trish gets here tomorrow morning for the last push.

But before I close, I should mention something else that has caused a buzz in the unit.  Today I perfected my Pacificier Retention System (trademark).  I can’t claim the original germ of the idea as I believe Nurse Aliza was responsible for that, but after another night of standing at Rudy’s bedside and holding the paci for him, I finally figured out a way to stabilize things without making them too tight.  I just needed to poke two more holes into the pacifier for the ear loops (which one obtains by cutting the elastics off of two hospital face shields).  Cutting a notch in the top allows ample room for the nostrils.  Dr. Lee was so impressed he grabbed supplies to take home for his newborn son.  To think, they have the equipment here to do multi-organ transplants, but nary a PRS.  Yes, six months in the ICU gives you a tremendous amount of time to think.