Exercising the Lungs

Today was another quiet day in the CTICU.  Rudy was alert kicking his legs and moving his arms all around when he was awake and also had some long stretches of comfortable sleep throughout the day.  His numbers remained stable for the most part.  An echo-cardio gram today revealed some fluid around his heart.  At this point, they will do another echo tomorrow to compare with today’s results.  If the amount of fluid doesn’t change, they’ll keep a close watch…if there is more fluid tomorrow, then they will determine a plan of action to deal with it.  I’m not quite sure what that means but I’m definitely praying the fluid will drain without needing an intervention of some kind. 

The big milestone for today was the “sprints” Rudy took almost off the ventilator.  Late yesterday he tolerated a 30 minute sprint where he was doing 80% of the work.  A big jump compared to the 10 minute sprint he tolerated last week before all his episodes over the weekend.  Twice today he made it a whole hour!  It was uncomfortable for him but the nurse said he tolerated it well and the process of exercising his lungs will be uncomfortable for him.  They’ll continue to do these hour-long sprints tomorrow as well as continue to turn down the breaths-per-minute on the ventilator.  Right now the ventilator is set at 18 bpm…their goal is to get it down to 10 bpm in the next couple of days.  It feels like good progress. 

The older kids are enjoying their visit with Daddy (a bit of an understatement) as Rolf will stay in SB through tomorrow.  They are all enjoying Oma’s goulash as I write!  Yum, yum.  I’ll head down to the cafeteria for my daily cup of soup here pretty soon and enjoy a little visit with UCLA nurse and family friend, Lisa, before she heads home after her 12 hour shift.  I can’t believe we’re at the end of another day…and almost to the end of another week!!  Thank you for your continued prayers for Rudy…our little fighter is working hard – sure to make all those cheering him on very proud!

Homage to a Hero: Dr. Dan Levi

Another one of the people who have been such an encouragement along the way.

 

Upon learning of Rudy’s diagnosis, the efforts I made to research HLHS treatment at UCLA led me to the Pediatric Cardiology website.  As I looked for points of contact, I came across Dan Levi’s webpage where two things caught my eye:  a title listing him as Director of the Pediatric Cardiology Fellowship and an undergraduate degree from Stanford.  I confess I’m not a very good alum and can’t remember a time I played the alma mater card (after all, it might not mean anything more than my dad and his writing a lot of checks to the same place 20 yrs ago), but it was worth a shot if it served to give me some leverage with someone in authority in the place my son needed treatment.  So I sent an e-mail explaining our diagnosis, asked what treatment might look like at UCLA and closing by pointing out our common Stanford tie but making it clear that this didn’t imply any inappropriate obligation.

 

The next day, just minutes after I got a “GO CARDINAL” e-mail telling me he would be calling shortly, Dan rang me on my cell phone.  Consistent with the conversation I had a day earlier with Gary Satou, I found comfort in speaking to someone knowledgeable in the scary mystery thrust on us.  Dan had good information, wise counsel and, more than anything, apparently as much time as I needed to ask questions and have information repeated.  He informed me of the steps UCLA had taken recently specifically in bringing on Brian Reemtsen to handle cases like ours.  He made it clear that I should contact him via phone or e-mail at any time if I had need.

 

Rudy’s early arrival prevented any chance of us having a chance to get acquainted ahead of time, but shortly after Rudy was placed in the CTICU, I met Dan in person.  I’m beginning to fear conversations with Dan as with each one we land on another common connection:  Stanford, people at Stanford, his parents live in SB, I’m acquainted with his aunt and uncle, we were born in the same town in NJ…I fear we’re not far from discovering that I bullied him at summer camp or egged his car in high school.

 

We’ve discovered so much about each other because Dan is personable and makes a point of stopping by and checking on us about as much as he checks on Rudy.  Right now, he’s not directly involved in Rudy’s care but, like most around here, seems to keep tabs on the Norwood patient.  There have been a few days where he’s come by and made mention that he wasn’t actually on floor duty.  Before we could compliment him on his dedication he explained, “I only come up here because the tea is free and buying it downstairs everyday would be really expensive.”  Given my reputation in every place I’ve worked of making excuses to drop by offices with free coffee and tasty snacks, I applaud Dan.

 

As Monday was a particularly rough day that left us unsettled, Trish and I were touched that he made a point of stopping in quickly just to offer some empathy stating “I don’t want to come by when things are only going well”.  In the years ahead, his specialty of heart catheterization will have him involved with some of Rudy’s key procedures down the line.  We’re grateful that coming back to UCLA for these will not only be a chance to receive excellent care, but a chance to see a friend.

 

A Wonderfully Boring Day

Our prayer for a calm day was answered today.  Rudy was calm all day, blood pressure stayed right where it was supposed to without any meds and fluid continued to drain.  The team has been progressively turning down the ventilator every four hours and overall he’s handling that well.  There have been about three episodes where his breathing gets rapid and shallow–usually when we’re talking or up close to the bed.  But while he wasn’t able to recover from these over the weekend, today he was able to slow his breathing down.  As I write this, he’s on the high side (75 bpm), so I’m quietly praying that number down.  The alarm goes off around 80, we’d love to see it in the 30s.  Ahhh, just crossed down into the high 60s.  Now my own breathing is slowing…

Assuming his progress continues, we are probably looking at another week on the ventilator.  If all remains calm tonight, I’ll come to the hospital to wish Rudy a happy three-week birthday and will then make the run up to Santa Barbara for a couple days.  The kids have been such troopers (not to mention Oma and Opa), so it will be good to have time with them at home, walk them to school and cheer on Max at his flag football game.  It will be good to sleep in my own bed and see a few familiar faces in the office and around town.

The breaths per minute have fallen down to 57 right now…sweet!

a.k.a. The Milk Maid

 

 

 

 

 

 

 

 

Today is October 21st and it’s hard to believe that today was the date originally slated to induce labor!  My oh my, nothing in this odyssey has gone according to plan but I can say that in this moment of this hour of today I’m thankful…extremely thankful for the quiet morning we’re having after a string of, at times, terrifying moments over the weekend.  The episodes in the past few days have set us back potentially a week which isn’t discouraging to me as long as Rudy remains stable.  The hardest part of this past weekend was watching him struggle.  At one point, Olivia and I were in the room with Rudy when he started having trouble.  The team came in to tend to him and I started to get more and more uncomfortable with Olivia in the room so I decided to leave with her and take her back to the hotel room but I was heartbroken leaving Rudy knowing he was struggling so.  I was torn and didn’t know which was the better choice.  I cried on the walk back to the hotel.  Not really aware that Rudy was distressed, Livy patted my hand as we walked and said “the tears just come and go, don’t they?”. 

(I apologize in advance if this is too much information…)  Another odd dynamic to this whole scenario is that my milk has been in a perpetual state of “letting down” since Friday…a constant (and somewhat exhausting) reminder that things aren’t as they “should” be.  I’m getting quite a reputation in the CTICU for my milk production.  Because I don’t have a place to store my milk, we’ve been storing it at the hospital and the various freezers on the floor are getting full.  The classic quote on this subject came from Olivia when she saw me pump for the first time and ran out of the room to tell her brothers that “Mommy’s making milk like a cow!!”.  So, you can add “milk maid” or “Bessie” to the growing list of new names for me.  It’s all okay with me as long as Rudy will one day need it!  He’s off all breastmilk now and will be for a while so in the meantime I’ll keep dispensing and finding creative places to store it!  I don’t know how good the milk is, though, with all the emotional dips and outbursts of the past few days, I’m surprised the milk isn’t coming out curdled!!

Your amazing persistence in praying for Rudy and our family is GREATLY appreciated.  Thank you!!!

All’s Calm on the Night Watch

After the day we had, I’ve come back to sit with Rudy for a few hours.  Just as we left this afternoon, they backed off most of the medications, so when I came in he had his eyes wide open and was looking around–I only wonder if he realizes what kind of day he had.  Within a minute of my coming up to him, all the alarms started to go off as his heart rate, blood pressure and breathing all went up.  Excited to see you too, champ!

In the hours since, he’s calmed down and now the numbers look beautiful.  About an hour ago, Dr. Lee came in and was considering some medication to lower the blood pressure, but before they could get it in the drip it dropped on it’s own.  I think he fell asleep.  So now, the room is tranquil and I think he might be lulled into deep sleep by the bubbling of the chest drains–that’s right, the polar (I mean “generic”) bears are back, but now he’s got a twin set and they rigged them with some kind of bubbling water effect so it sounds like a babbling brook in here.

In case your curiosity is piqued, here’s what generic bears look like:

 

 

Not sure what this is about?  Click here and then here for the background on this important issue.

Not Quite the Calm Day we Prayed For

Rudy’s been on quite a ride today.  The weekend had activity enough, so as we walked into the hospital this morning, Trish offered up a quick prayer for a calm day with no surprises.  But that wasn’t to be.  It’s now just about six and we’ve sat here at Rudy’s bedside for the longest stretch so far today—about 40 minutes.  Rudy underwent three procedures today that had us out of the room for as much as 2hrs each time.

 

 

When we came in this morning, he looked plump as a turkey due to infection and the fluids he was retaining.  The skin on his torso was stretched taught and shiny from all the stuff in there.  Through the night, the doctors were very concerned with keeping his blood pressure high.  When we left last night the alarm for low blood pressure seemed to be going off every three minutes and that pattern continued.  By this morning, they put him on another dose of paralytics and sedatives so that the team could regulate his blood pressure and ventilation without any movements of his interfering.  While this was still categorized as part of the “ups and downs” it was an emotional step backwards to see him immobilized like he was around the surgery. 

 

They decided to insert two chest tubes to drain the fluid off his lungs.  The fluid coming from the left side bore evidence of infection, which confirmed the course the team had started with antibiotics a couple days ago.  Fortunately, it was determined that the fluid was just “milky” and not “puss-y” (finally some medical terms we understand)—the latter would have been signs of a more advanced infection that would have set things back further.  Almost immediately after the drains were placed, his body looked remarkably deflated and both his blood pressure and breathing began to improve.  Relieving all that pressure made it easier for his blood to pump and his lungs to work.  As we walked back into his room, we were asked to give consent for the insertion of a new IV catheter line into his chest which meant we had to leave again.  Unfortunately the nurse was not able to place the line through his little arm veins (something they warned us might happen) after multiple tries, so after a brief return to his bedside it was decided that Dr. Kelly would put in a chest port, so even though we were running out of lobbies to sit in, we stumbled out for another hour or so.  This procedure went well and an X-ray confirmed that the line was in the right place so now Dr. Abel and Nurse Katrina are making final adjustments next to me as it’s getting dark outside.

 

The vital signs and labs are looking good.  They’ve backed Rudy off most of the medications and he’s starting to wake up.  A few minutes ago, the alarm went off for high blood pressure which is something we haven’t heard in awhile.  The ventilator has been turned down to 30 breaths per minute after being above 40 the last few days.  The team feels good about how he looks, but we can’t help feeling he looks a bit pale and wiped out considering the day he’s had.  Here’s praying for a night of rest and that calm day to be tomorrow.

Clearing Rudy’s Chest

The doctors are watching Rudy closely and just asked us to leave so they could put in some drain lines to get the fluid off his chest. Fighting the infection is the primary focus right now. They have put him on paralytics again so he doesn’t move as that could have averse impact on blood pressure and fluids in his body.

Everyone’s Trying to Catch Their Breath

It’s Sunday evening and the ups and downs this weekend leave us feeling sapped.  Rudy was stable through most of last night until about 4am when he had another drop in blood pressure.  This one was corrected with a change in medication.  He was stable through the morning and then had a serious drop around 11am where the team had to jump in and do chest compressions for about 90 seconds until they got him stable.  Fortunately, Drs. Reemsten, Kelly and Shannon were among those present (on Sunday morning—I don’t think they ever bring in a B-team here) and after wheeling in all the equipment for ultrasounds, Xrays and Echos it was determined that the primary cause was a clog in his ventilator that he wasn’t strong enough to clear.  His major organs and especially the heart were looked at closely and determined sound.  Later in the afternoon, they did an ultrasound on his brain just to make sure the episode didn’t cause any neurological damage.  All was determined to be clear and the team continues to feel that these are part of the ups and downs that come with such a complex surgery on a delicate patient. 

 

If this is part of the ups and downs, we’re not sure what it will feel like to experience some full blown complications.  Dr. Reemtsen let us know from the outset that he would always be frank with us and tell us clearly if we ever get to a place where circumstances are dire, so there have been a couple of times in the last two days where I’ve reminded a doctor or two of this and been reassured that this is still a matter of time and these kind of setbacks are all things that need to be watched closely, but among the issues that arise with a patient like Rudy.  As I write this, Rudy looks peaceful and angelic having had a bath at the end of all the episodes today.  After being almost off all of medications on Wednesday, he’s now back on a whole slew of drips for blood pressure, infection, kidneys, blood product and a nice sedative so he can sleep.  I’m thinking of asking the nurse to sneak Trish and I a couple doses of our own of the latter.

 

The two issues that seem to be of primary concern are infection and Necrotizing Enterocolitis (NEC).  The latter is a common but potentially serious condition where the bowel doesn’t work (perhaps due to poor circulation) and it can develop into a rupture which would require surgery.  As yet, they are taking Xrays every six hours and don’t see any ruptures.  So now they address it by restricting food and giving antibiotics.  They did discover some infection in cultures taken around his ventilator tube, which could also explain the accumulation of fluid around his lungs, lower blood pressure and general weakness.  They started him on a course of antibiotics yesterday afternoon which will hopefully address both conditions.

 

In the midst of all this activity, the kids came to LA for a visit this weekend.  Really great to see them, but I think I have a sense of what prison furlough must feel like.  They really are troopers and we are so grateful for Oma and Opa taking care of them, but it’s clear the separation is taking a toll on them.  We were able to squeeze in some time for fun on their terms (skatepark, movie, football, play) but it still included a goodbye that came too quickly for us all.  We were hoping that I would be able to get back to SB sometime this week as even just a couple days up there could go a long way for them.  I still would like to do it, but even a passing conversation with a doctor in the hallway this evening affirmed that we’ll need to stay close by Rudy for the next couple of days.

 

So please pray that Rudy’s blood pressure would stabilize and that antibiotics would do their work on the infection and the NEC.  Pray that he would rest, gain strength and be able to move along in his recovery.  Pray that we would be patient—at peace with the timeline for all of this and that we would have renewed confidence for a positive outcome for Rudy after the unsettling experiences of today.  Pray that our kids would be at peace at their own level of understanding and emotions of this whole journey and that we would be wise as to what they need and be able to make decisions to leave Rudy if Wilson, Max and Olivia need us.

Slowing the Pace

Rudy had some challenges yesterday afternoon.  He began to struggle with his breathing more than the doctors wanted as the ventilator was progressively being turned down over a series of hours.  His blood oxygen saturation was consistently low and his digestion slowed significantly (an early sign of distress).  The doctors also discovered a thyroid deficiency and were also concerned about the level of fluid in his lungs (too much, so by late afternoon they decided that he needs to rest and gain strength for awhile.  They took him off breast milk and turned the ventilator back up to where it’s doing all his breathing for him and gave him time to rest.  So, he’s been on this course through last night and most of today.

The doctors have told us that they will always communicate clearly, especially if there are major complications, so we are trying to hear them very clearly that this is a setback, but not outside the scope of what they would expect in the treatment process.  It is a bit of a discouragement to have to re-adjust our timeline and realize we may be looking at a matter of a week or more rather than a few days to get him off the respirator.  So please pray for him to continue gathering strength and to give him comfort in this process–he’s continually more expressive and the soundless crying fits can be tough to watch.  There are increased risks of pneumonia for patients who are on ventilators too long, so please pray for protection from that and that the thyroid production would kick back in.  On a positive note, his kidneys continue to make good progress with the creatinine falling to 1.1 this morning.  This afternoon, they will do an Xray on his stomach to make sure that there’s nothing physiological interfering with his digestion.

I went to see Rudy at 6am this morning and since then we’ve been away from the hospital with the rest of our kids.  Please pray for them during this time.  Trish and I are trying to be wise in the way be balance life during this separation. The longer it extends, the more we will need to look at taking some trips home so that we aren’t just trying to cram time in with them on the weekends.  They are always eager to see us, but having to make the trip to LA too many weekends in a row could get old.