2-11-09: Happy 19-Week Birthday

paci holder
paci holder

I couldn’t let today pass without mention of Rudy’s 19-week bday!!!  We celebrate him tonight as he eagerly sucks on his “new and improved” pacifier complete with ear ties to keep it in place!  🙂  He has promised more than one nurse to be their Valentine so I imagine he’ll get alot of attention in the next couple of days with visits from nurse-friends during break time.  So thankful to God for his precious little life so far!  Happy Birthday Rudy!

Gastric Emptying Test

Rudy, Nurse Kelly and I had an early morning field trip down and over to nuclear radiology today for a “gastric emptying test”.  RT Oscar and Fellow Julianne helped in the transport to a whole other building in the medical plaza through a basement corridor – quite an adventure.  The test involved the tech putting 30 ccs of formula laced with a tracer into Rudy’s stomach through an NG tube in his nose.  Then they put him under a scanner for 90 minutes and every 15 minutes they took a minute-long picture of his stomach to see if the stomach was emptying normally.  The challenge was to keep him still as he didn’t get his morning pain meds in preparation for the test so I stood next to him holding his pacifier in place and stroking his hand the whole time…so sweet!  The preliminary results indicate that Rudy’s stomach does have a delay in emptying.  This is not a huge surprise but the question now is “why?” and “is this a permanent condition or just another one of Rudy’s systems that is slow to kick in?”.  The next step is to do an Upper GI contrast test which is scheduled for tomorrow.  It’s similar in that they’ll put formula mixed with contrast down his throat and watch it’s journey to the stomach via fluoroscopy looking for any obstruction.  So, the information gathered from both tests will help determine the next step…most likely a GJ feeding tube that goes directly into the intestine through his side. 

Like the trach, this is another treatment option explained to us a while back that we hoped Rudy’s journey wouldn’t come to but it looks like that may be where we are headed.  From what I understand,  a modified nursing schedule in conjunction with the feeding tube may still be an option if Rudy can learn to latch on so I’m praying to that end.  This is a really full week for Rudy…an aggressive push to make some progress which is good but it’s also generating a ton of information to process.  Not that we have many options but please pray for clarity of mind for me and Rolf as we digest each nugget of information comin’ our way…no pun intended!  Please pray for Rudy’s comfort this week as well as he is being messed with a great deal while trying to heal from the tracheoscopy.  Such a sweetie-pie!

gastric emptying test - getting preped
gastric emptying test - getting prepped

 

 

getting positioned
getting positioned

 

all set
all set

He’s Back!

Dr. Shapiro called from the OR at 12 noon to say that Rudy did well and they were finishing up.  They wheeled him into his room at 12:20pm and he is resting…slowly coming off his sedatives.  He is so precious!  It’s a little troubling to see a tube coming out of his neck but the exciting news is we can see his beautiful face completely tape-free!!  He’ll have to stay still today but I can hold him again tomorrow.  They’ll have to watch him closely for 7 days…next Tuesday they’ll change out his trach tube and then begin to train us how to do it – yikes.  So, our little man has some more recovering to do.  The trach is a tough emotional hurdle for me – more so than his open heart surgery which was a hundred times riskier – and I think it boils down to the fact that the trach is a visible reminder of his limitations at this point.  Everyone’s feeling is that this won’t be permanent for Rudy and I trust that will be the case.  So I’m trying to keep it all in proper perspective in the midst of the emotions of today.  Rudy inspires me to keep fighting…if he can fight so hard for so long, I certainly can too.  Thank you for persevering with us in prayer!  What would we do without you all?

Trach Day
Trach Day

 

Angel face
Angel face

 

 

Angel face with a hat.
Angel face with a hat.

Ok, He’s In!

Dr. Shapiro met me in the hall outside the OR to introduce herself…I like her and her team.  She’ll first do a bronchoscopy to see if there is anything obvious preventing Rudy from inflating his right lung and if not, she’ll go ahead and do the tracheostomy.  If all goes well, he should be done in 60-90 minutes.  Thank you for lifting our little warrior in prayer this morning.  Bless you…

February 10, 2009

Good Morning Dear Ones,

It’s about 9:50am and the OR just called to confirm details for Rudy’s transport downstairs.  RT Oscar is doing one last IPV treatment before they take him for the tracheostomy.  As Rolf mentioned in his post last night, we know in our heads this is a positive step but our hearts are heavy.  I got a little overwhelmed last night as I googled the subject and found sites like “Guide to home care for a child with a tracheostomy”.  Not a place we wanted to find ourselves or Rudy but we trust God’s fingerprints will be all over this little detour as well.  Dr. Nina Shapiro will perform the surgery and comes highly recommended.   Dr. Rick told us yesterday that he’d want her operating on his kids and he wants her for Rudy…period!  I’m thankful for her expertise and Dr. Rick’s confidence in her.   So, here we go…the transport team just arrived and we’ll be heading down shortly.  I’ll post an update when he is safely in the OR!  Thanks everybody…

If only Disneyland had a monopoly on rollercoasters…

Rudy couldn't come, but we brought him a souvenier!
Rudy couldn't come, but we brought him a souvenier!

As Trish already mentioned, our weekend was a bit surreal.  Olivia, Wilson and Max got a huge morale boost by our two days at Disneyland/California Adventure.  It was cold and rainy enough that we had to seek shelter a few times, but it also served to keep the crowds away.  We watched the kids get lost in the experience, laugh and have fun, try some new risky things (like Olivia and Space Mountain) and come away thrilled.  I found myself trying to learn how to feel two very conflicting emotions at the same time; sharing the joy of the kids’ experience while feeling burdened and heavy for Rudy and the struggles we knew he was having over the weekend.  It brought us again to a place of feeling very torn–we have a baby in ICU and it kills us to not be there, but in front of us there were three kids who were finally getting some respite from months of upheaval who need us just as much as Rudy does.  So I often found myself in a bit of a stupor–loving the fact that my kids were care-free and bouncing around with smiles on their faces, yet troubled that I have a baby in critical health and I’m at an amusement park.  Wish there was a guidebook for such things.

Rudy was on a rollercoaster of a different kind and we’re so glad that Oma was keeping an eye on things at the hospital for us.  On our way back from Anaheim, we stopped at the hospital to pick her up and drop off Trish.  While there we had a long check in with Dr. Rick which brought us back to reality a bit quicker than we may have hoped.  This week, there are three items on the agenda for Rudy:  A tracheostomy, a gastro-intestinal consult, and a neurological exam.

None of the three terms seem all that warm to us, least of all the first.  Rudy has had two very solid attempts at breathing on his own and was not able to maintain things without the accumulation of mucus in his lungs.  As all of the conditions were seemingly right for these two attempts, there isn’t much reason to believe trying again in a few days or a few weeks will bring a different result.  On top of this, re-intubation is a disruptive procedure which has been shown to negatively impact Rudy’s heart rate, so having a port in his neck to breathe from can give the team more options with the ventilator and allow them to suction the lungs more effectively.  It’s obviously an option one hopes not to take, but it is viewed as temporary–as patients grow bigger and stronger they are able to eventually breathe normally.  As it turns out, the ENT specialist Rick contacted today and really wants to involve happens to have an open OR window tomorrow (Tuesday) morning at 10, s0 we gave consent to go ahead with this procedure.  As part of the process, they do check the trachea and lungs very carefully just to see if there is some kid of physical obstruction which may be causing problems, but Rick isn’t expecting them to find much.  We should be prepared for the tracheostomy.

The team is also going to look closely at Rudy’s stomache function as he has had difficulty with every attempt to feed him thusfar.  As we spent most of our discussion on the topic above, we’re not sure all that’s involved here, but they do need to get some specialized input on what might be going on here.

Lastly, Rick wants some good imagery done on Rudy’s brain mostly because there is no good explanation yet for the consistent fevers he has.  We want to be sure there isn’t any kind of abscess in his brain that might be hiding somewhere.  There’s not much evidence of neurological issues with Rudy, other than a tendency he has of looking to his left more than the right–but this could might be more out of habit.

Three pretty big things to grapple with and we were grateful for Rick’s forthrightness and care in explaining them to us.  We trust this team and their commitment to Rudy and our family.  Very little is known about HLHS and why it strikes, but so far there is no link drawn between it and the incidence of other conditions.  From my layman’s perspective, the same steps needed to correct this heart lesion also inflict trauma on a delicate little newborn body.  Recovering from them presents quite a challenge.  Most readers would have to wonder if we’re going to extreme means to help a little boy who can’t breathe or eat and, having discussed this with Dr. Robert, I took the opportunity to ask Dr. Rick.  It’s a conversation you can’t quite believe you’re having about your child, but the assurances we have from both of them are that their plan for treatment still views Rudy’s issues as surmountable and that he will move beyond them.  So we cling to that amidst twists and turns on a rollercoaster scarier than we’d ever dreamed. 

Please pray for Rudy on Tuesday at 10am PDT as he’ll be in surgery.  Trish will be on hand and will post updates accordingly during the day.

Rudy and Oma
Rudy and Oma
Uncle Alex came for a visit
Uncle Alex came for a visit

There are ALOT of Babies at Disneyland!

Not that I need anything visible to keep Rudy in the forefront of my mind but if I did, Disneyland would be the place to be!  Rolf and I were amazed yesterday at how many infants were being toted around the park in the middle of a rain storm…not a statement of judgement but an observation that filled our day with mixed emotions.  One minute we were scurrying around the park hand in hand with the older kids enjoying their sqeals and outbursts of “This is awesome!” and the next minute deeply distracted by our thoughts of and concerns for Rudy.  As surreal as the day was for me and Rolf, it was so great for Wilson, Max and Olivia and good for us to be together doing something special.  This morning the kids woke up talking about what fun they had and what their favorite experiences were.  They sure deserved the day and we pray the memories of it will encourage them in the weeks ahead as we continue on Rudy’s road to recovery.

A "meet and greet" with Minnie
A "meet and greet" with Minnie

 

 

A visit with Mickey
A visit with Mickey

 

 

 

 

 

 

 

 

It seems our preoccupation and concerns were warranted in particular as we got a call at 3:45am this morning informing us that Rudy was going to be intubated again.  We knew that his chest xrays were looking progressively worse in the last couple of days, but it was clear last night that his right lung was collapsing, his breathing labored and his sats dropped to the point he needed to be put back on the vent.  Dr. Andy called us when he was done and said Rudy was already stabilizing.  Rolf and I aren’t surprised but it is a discouragement…Rudy sure has had an eventful few days in our absence which makes it even more challenging to be away.  I’m looking forward to resuming my post at the hospital later today and will stay with him until Friday.

Music and Eulogy for Uncle Rixie

I promised that I would post audio clips of Trish singing at Uncle Rixie’s memorial service on Wednesday up at Stanford (thanks for the help, Greg).  Life has been such a blur and is at times so overflowing with the emotions of this journey that it wasn’t really until about Friday that some of the reality of Uncle Rixie not being with us anymore sunk in.  So, while it might be a bit off-topic for this blog, I’m including the eulogy I gave at the end of the service after six others had captured him so well with their tributes.  Rudy is understandably the focus of so much of our emotional energy right now, but I don’t want the passing of someone so significant to get lost in the blur.

The audio tracks might take a few seconds to buffer, but wait and enjoy.  It’s worth noting that Trish sung these without a mic–the acoustics of that place were amazing!

It is Well with My Soul

All people That on Earth do Dwell

 

I am so grateful for the way those who have shared have remembered important spheres of Rixie’s life with such vividness and warmth.  We were planning this service and thinking about how special it was to have it in this church on this campus that Rixie loved so dearly, and now having sat through it, I can’t help but think how much Rixie would have loved to be here in person.  Like no one else, he would have received these tributes with such graciousness and quiet pride.  In his own trademark way, he would have made each of us feel like we were the person he was most honored to have in attendance.

 

Rixie was unique in that he was so consistent.  We have a tendency to take on different personas as we move from realms of public and private, but whether he was with close friends, family or interacting at some of the highest levels of academia, Rixie was always his winsome and endearing self.  He endeared himself to people of great importance, but also to people of more modest station—like students, secretaries and some very fortunate kids.  In 1947, my father was one such student and I became one of those fortunate kids.  Rixie and Elliott became surrogate grandparents who brought joy and creativity into our lives.

 

·             At one of the first meetings I can remember when I was about five years old, I proudly entered our living room in my cowboy outfit and greeted Rixie with a “Howdy, Pardner!”  From then on, he decided we should adopt the monikers of “Big Pardner” and “Little Pardner”; which is how we addressed each other regularly for the rest of his life.

 

·             Around the time I was eight, I had just gotten my first pack of football cards and was showing them to Rixie.  He was immediately concerned that I did not have any players that had graduated from Stanford, so the next morning he asked my mom to drop us off at Woolworth so we could get a couple of packs of ten.  We ripped open the packs out on the sidewalk and found no Stanford graduates.  So Rixie kept sending me in with quarter after quarter until we had bought at least a dozen packs and got us a Bob Moore and a Jim Plunkett—not to mention six sticks of gum each that we put in our mouths all at the same time and sat on the curb chewing until Mom came back to pick us up.

 

·             While I know Stanford gave Rixie an office for other reasons, to me it was where he went to write me letters and I always got excited when I got something in the mail from my penpal at Bowman Alumni House.  His letters were always creative and they forced me to be the same—at first it was Big Pardner writing to Lil Pardner about life on the trail, but after a few years we started publishing newspapers—his was the “Governor’s Gazette” and mine was the “Post House Packet” and we exchanged our information via articles in our newspapers.  I remember there were items about what the fruit trees were producing in the garden on Governor’s Lane; travel reports from the Danube or the Delta Queen; the sports section was devoted exclusively to Stanford sports and the editorial page usually included some erudite diatribe about Cal.

 

·             As my grandparents lived overseas or were deceased, Rixie was attentive to me and invested in me over my lifetime like few grandfathers would have.  He encouraged me and I suspect would have been supportive of any course I chose, but there was probably some subtle coaxing in the Stanford t-shirts I would get for every birthday and Christmas.

 

·             Rixie said I got into Stanford on my own, but as wonderful as I may have been, I suspect it was hard for Dean Fetter to overlook the letter from a certain predecessor that got attached to my application.  And in my years on the campus, I always looked forward to Tuesday nights when the orange Rabbit would pull up in front of my dorm and Rixie would take me out to dinner just like he had taken out my father 40 years before.

 

In his own understated way, Rixie was very proud to live one hundred years.  He saw a lot of things and was able to remember astounding details about people, places and events and, as a historian, was able to provide context so that you came away feeling much smarter than you actually were.  Rixie and I were tickled during one of our last conversations over the fact that he was retired almost all of my life.  But that doesn’t mean he stopped being a professor; he may not have been grading papers or giving lectures, but he never stopped teaching.

 

The text Rixie asked that Schaff read from the Apostle Paul (ICor13) elaborates profoundly on the concept of love.  They say that one can have a full life, rich with experiences and possessions, but without love there is emptiness.  Rixie was a loving person and if we look at his life, he gave us profound lessons about love:

·             He taught us that a deep love of people can reward one with an expansive and close extended family even if one hasn’t any biological children.

·             He taught us that love—expressed in interest, genuine concern and warmth—turns co-workers and colleagues into lifelong friends.

·             He taught us that love, in the form of diligence, wisdom and service, can be the bedrock of a tremendously successful and visionary career.

·             He taught us that love, manifest as winsomeness and warmth, can actually be more effective in influencing people than brashness and assertiveness ever could.

·             He taught us love, lived out in a lifelong devotion to an institution, can and will continue to impact thousands in ways unimaginable for years to come.

 

The professor never stopped teaching, my hope is that I’ll be a good student and never stop living out what we’ve learned from him.

 

 

 

Evening Update

We got a voicemail from Dr. Dan this evening telling us how great Rudy looks off the ventilator and, if we didn’t already know it, that we have a tough little guy.  My phone conversation with Dr. Robert this evening confirmed that and gave more detail on the events of the day.  I guess I was a bit off in my previous post in that, while the team was planning on taking out the tube within the hour, Rudy got it out himself about 30 minutes ahead of time.  It needs to be in just the right place and only a few centimeters can shift it out of place, something he was able to accomplish with his tongue and swallowing muscles.  Dr. Brian claims to have checked in on Rudy early this morning and told him to get rid of the tube, so I guess he was just being a good patient.

What makes us very glad right now is that the team is very encouraged by how good Rudy looks.  He’s breathing in the low 20s with saturations in the high 70s.  While he does get a bit agitated, he is able to calm himself down with the pacifier.  This has reportedly presented a problem of ingenuity in the CTICU, where they have gadgets that can probe just about every part of the body through any chosen orefice, but no appropriate technology for keeping an infant’s pacifier engaged.  Dr. Robert reports that quite a few innovative attempts have been made with various tubing and tape contraptions, but most of the time it requires a highly trained human index finger to hold it in place.  Hold on, everyone–we’ll be there shortly.