Quick Update: Re-gaining Ground

At 5:30, I called Nurse Amy just as I was getting off the freeway here at home and she reported that Rudy was doing fine since I left.  The fever was no longer a concern and he was just gliding down the home stretch of a two hour sprint.  So, there’s been a delay but we’re bouncing  back nicely.  Here’s praying for more progress tomorrow.

I just checked out the Manning’s blog entry about their visit this weekend and think it’ s pretty cool.  Peace out, homies!

Afternoon calm in the wake of a rocky morning

It’s coming up on three and it looks like Rudy is close to a place where I can leave him to head back to Santa Barbara to switch places with Trish.  Rudy had a fitful morning running a fever due to the infection he’s been fighting.  It took awhile for all of the necessary measures to take effect, but for the last couple of hours he’s been resting comfortably with good rates for his heart and breathing.  The fever is coming down, so hopefully we’ll be able to do a sprint or two this afternoon.  It’s hard to endure a setback.  We’re far from square one, but this journey is fraught with letdowns over progress not attained.  It would be dishonest to say it’s not discouraging.

As frustrating as my morning was, it was overshadowed by the commotion on the unit.  We had a very sick little patient come in that brought a flurry of activity like I’ve never seen before.  About twenty staff, many of them rushing in with equipment–each piece scarier than the last.  It went on for about three hours during which I tried as hard as I could not to make glances down the hallway, but there were two parents standing there shell-shocked at their introduction to the world of the ICU.  As they were too concerned for their child and loaded with adrenaline to display any of their own emotion, I did a little crying for them in my own room.  On the one hand, so grateful it’s not my kid this time, but still I wish it wasn’t anyone else’s.

The dreadful carts have been moved back to their places and are being made ready for the next time someone needs to run for them.  I just saw the parents walk out crying, but a quick check past the room indicates they were tears shed over what their child has to face and not over a battle lost.  Grace and peace be over this place and on the little fighters here.

Going for the jugular…

It’s been awhile since we were the busy room in the unit.  Unfortunately, that changed today.  Rudy made it through the first of his three hour sprints in the early morning before I even got to his room.  From 11 on, he started to get more and more fussy (with a high heart rate and breathing) and the usual steps to calm him down (holding him, changing positions, suction, rescue doses of sedatives) didn’t change things much over a four-hour span.  While the team worked to eliminate possible causes, things became clear when his temperature spiked and his blood gases indicated he was headed toward acidosis.  The infection we’ve been monitoring in the picc line was now presenting itself as something that needed to be reckoned with.  Remarkable how quickly things can change—the same tests gave no indication of anything being amiss just hours earlier.

 

Just after 3pm I signed consent forms and left the room so the team could insert a new picc line.  One of the reasons why the team didn’t just pull the line out of his arm right away was the simple fact that they are running out of sites to start lines on Rudy’s little body.  This turned out to be all too true as they started trying to insert into Rudy’s groin.  When that didn’t work, they tried to put a subclavian line in his chest.  Two hours into my exile from the room, I was called asking to give consent for them to go through the neck into the jugular vein if chest insertion wasn’t possible. 

 

So I set out on what turned out to be five hours of trying to keep myself busy.  There’s a surreal feeling to the times where we have to leave Rudy for a procedure.  If it doesn’t last longer than they say it’s going to it always feels that way.  All I really wanted to do was curl up on a couch somewhere with a quart of Ben and Jerry’s, but I decided to take a walk around campus (OK, I did get an ice cream cone to safely offset any calories I might have burned).  Turned out to be quite a long walk, but most of my exertion was directed toward not checking my phone every 30 seconds.  About the time I thought it would be smart to get an early dinner while I couldn’t be in the room anyway, I got that call about consent to go for Rudy’s jugular.  On hanging up, I found myself in another one of those surreal moments of uncomfortable weirdness—“Yes, go ahead and stick my son in the neck.  Now, do I want Thai or a burrito?”  Pretty good food, but not much enjoyment.

 

I walked back to the hospital a bit frustrated by how familiar this whole place and routine are.  I know the stains on the sidewalk.  I know it’s around shift change so I headed to the West elevator because the East gets crowded.  I recognize too many of the faces coming in and out of the building.  I saw a couple of nurses from labor and delivery and walked the other way as I just didn’t feel up to elaborating on why we’re still in the hospital 16 weeks after our encounter with them.  I set up in one of the weird little lounges on the floor waiting for the call from the unit and pondered what decorator decided that pictures of polar bears would go well alongside the Great Wall of China mural (once again, at a moment when I’m not able to focus much on anything else—it’s polar bears again).

 

I got back to Rudy around 8:30pm and he was resting comfortably with the line in his neck and the suspect one gone from his arm.  Dr. Robert still feels very good about where he is, but put a hold on extubating tomorrow.  That really bums us out.  We were so close—and still are, but wisdom would dictate that Rudy have at least a day of rest since this afternoon unfolded into more of an ordeal.

 

At long last it’s quiet here in Rudy’s room and I’ll just sit here with him for awhile as Nurse Betty keeps an eye on everything with her trademark quiet efficiency.  Weary?  You bet, but tomorrow’s another day and we’ll look to get back on track.  Please pray with hope for Rudy—that he’d get good rest and be strong to move off the vent this week and that, now that the picc line has been changed, this bout with infection is safely behind us.

Strong and Steady

One more picture before the dash to LAX
One more picture before the dash to LAX

Today was an eventful day.  Trish and I drove down from Santa Barbara with Grandpa Dick and Grandma Jo and swung by the hospital for a quick visit before seeing them off at LAX.  They enjoyed a chance to hold Rudy and say goodbye.

 

Our little warrior keeps making progress on his breathing.  Today’s plan was for three 3-hour sprints.  He made it through the first one effortlessly, but was a bit riled up on the second so we had to cut that one off halfway through.  Perhaps our presence can make him a little bit agitated and it can take some intervention to get him calmed down.  As I write this he’s got about 45 minutes left on his 3rd sprint so Trish and I are sitting here calmly and he’s cruising on through it without much fuss.  The plan is to give him one more day of exercise tomorrow with three-hour sprints and then pull the tube on Monday.  So, please pray for continued strength for Rudy leading up to that so he can successfully transition off the ventilator.

 

The team is continuing to take blood samples for bacterial cultures each day.  One set from two days ago started to show a little growth so Dr. Robert has changed up some of the antibiotics to stay on top of that.  Infections come with the territory with extended ICU situations so we’re not overly concerned at this point as Rudy is not showing extreme symptoms, but please pray that the steps the team is taking would hold things at bay.

 

All this brings me to the major highlight of the day (if not the week).  We were visited today by Alan and Vickie Manning.  Followers of Rudy’s Beat are likely aware of their journey (click here for their blog).  As we have drawn such comfort from reading their blog and exchanging e-mails, it was very emotional to meet them.  There was much to talk about and probably even more that didn’t need to be said.  Alan and Vickie are heroes to us as they’ve come face-to-face with the same monster and know the lay of the battlefield.  They’ve been pushed to a place of having to make the most difficult decisions parents need to make and know that even the most excellent medical care can’t fix everything.

 

The five hours together flew by so quickly.  Faced with a condition that strikes only 3 out of every 10,000 kids, it was a comfort to be together with people who spoke our language.  We laughed over our parallel experiences in ICUs at opposite sides of the country.  It might only be a small minority of people who have spent enough time in such places to find the humor therein—the rest of the population is often rightfully terrified.  Thank you, Alan and Vickie, for your courage and perspective; we are grateful for your friendship and encouragement.  When speaking of Katie’s passing, one thinks instantly of your loss—but I also come away grieving what Katie lost in only having you as parents for such a short time.

 

Allan and Vickie cheering on Rudy
Allan and Vickie cheering on Rudy

Good progress while we’re away

Nurse Amy rocks!!!  Actually, all of Rudy’s nurses rock, but she’s the one that’s there today.  We kept in touch with her by phone and she reported that Rudy made it through 2 hour sprints today without any trouble at all.  Perhaps he was a bit starved for attention because he got really fussy and nothing Amy could do seemed to calm him down until she decided to hold him–and did so for three hours!  That made our little charmer a pretty happy camper.

This is very encouraging progress and it has Dr. Robert charting a course for extubating in a matter of days.  The team has kept an eye on Rudy from an infection standpoint and the cultures aren’t returning much of significance, nor are there symptoms that seem to be holding him back.  He looks strong and capable, so the plan is for Rudy to move to three 3-hour sprints tomorrow.  Depending on how it goes, they could pull the tube on Sunday or Monday.  Please keep praying–we have to be prepared for twists and turns yet to come, but it sure would be great to get past the vent. 

In the meantime, we’ve enjoyed our final evening with Grandma and Grandpa before we see them off tomorrow.   While I worked today, Trish found the time to lunch with them down at Beachside Cafe (but I’m not jealous…really I’m not–the Clif bar I had at my desk was soooooooo tasty).  I got my fill tonight as we grilled steaks in the rain to console Dick and JoAn after besting them at Pinochle.  It was all topped off by a visit from two raccoons just now who were either quarrelling or amorous, but clearly not in a rush or bothered by humans nearby.  Just part of life in the wild here in Goleta.

As you can tell, our spirits are up.  Can’t wait to see Rudy tomorrow!

A Rainy Winter Day in L.A.

Where's my thumb?
Where's my thumb?

 

 

Wanna find it!
Wanna find it!

 

 

 

 

 

 

Lovin' the cuddle time!
Lovin' the cuddle time!
Finally, after several days of summer weather, we got some much-needed rain today.  I enjoyed walking back from lunch in a little down pour.  Rudy did well all day.  He started sprinting again and tolerated two 1-hour sprints like a pro.  After lunch, we settled down for a nice “rainy day” cuddle time that lasted about 3 hours during which he did a sprint, endured a straight cath for a urine sample and a RT treatment…again like a pro.  The immunology folks stopped by to review Rudy’s history and begin their own records on his case as we will have a long term relationship with their department.  In the future, our follow-up trips to UCLA will involve a few appointments with the various departments that will need to monitor Rudy’s condition.  Immunology will be one of them and with the onset of a few infections this week, it seems now is a good time to get them on board specifically.  I’m headed back to SB tonight so I can spend the day with my folks tomorrow before they leave for their home in Kansas on Saturday.  I hate to leave the sweet little one but thankfully he is asleep…it’s always so much easier to leave when he is asleep.  No doubt he’ll have a long string of his nurse, RT and Dr. friends dropping in to check on him tomorrow so he certainly won’t be alone…I can’t express enough how thankful Rolf and I are for the many capable and loving hands that have cared for our son and continue to express their love and care for him whether they are assigned to him or dropping by on their break!  We are so blessed.
Bright-eyed after our cuddle time
Bright-eyed after our cuddle time
PRECIOUS!!!
PRECIOUS!!!

Happy 16-Week Birthday!

Happy 16 Weeks!
Happy 16 Weeks!

 

 

 

 

 

Sitting upright with Nurse Angeli
Sitting upright with Nurse Angeli

 

 

 

 

 

I have found that keeping busy with some sort of project in Rudy’s room keeps me from obsessing over Rudy’s numbers and “hiccups” from minute to minute.  As a result, I was able to get Rudy’s birth announcements out in October…our Christmas cards in December and this month’s project has been to compile a binder of “Rudy’s Beat”.  Today is our 16th week with Rudy at UCLA and I spent part of the day skimming previous entries as I arranged them in the binder…an amazing trip down memory lane in the midst of a chapter that is still being written! 

Today’s page…

Rudy had a good day…like yesterday, he rested soundly for most of the day and looked real comfortable.  It was a full day in that we had a number of consultations with doctors in various fields to help determine our next steps.  Today’s focus was infection.  After Monday’s struggle, a number of cultures were sent for testing and they came back positive for infection…so far infection was found in his urine, in his ET tube (bacteria that has been present around the tube for some time) and also in his picc line.  They started antibiotics yesterday which have helped already.  The challenge is addressing the bacterial infection in his picc line.  Normally the choice would be to simply remove it and put another line in somewhere else.  Unfortunately, the nurse practitioner who puts the lines in for Rudy has been unsuccessful in getting a line in some other place…there just isn’t any more access.  There was talk of attempting to put another line in surgically but I think the plan now is to try to salvage the one he has for the time being.  We are still waiting for the results of an additional test to determine if the bacterial infection is isolated in the picc line or if it’s in his blood.  So, feeding is still on hold until the infections are cleared up.

Thankfully, none of this has interrupted the weaning process.  Rudy started the day at 14bpm and is now down to 10bpm with a pressure support of 10!!!  If he holds steady with these settings tonight, then he’ll start sprinting again tomorrow.  We are so close to getting off the vent…the closest we’ve been so far, at least.

Although Rudy isn’t getting feeds to his stomach, adjustments have been made to his nutrition through the TPN  he gets in his picc line…the reduction of glucose seems to have helped Rudy’s ability to breath easier already and that’s encouraging.  Since the plan is to not feed him until the bacteria issue is resolved, the stomach contrast test and the insertion of the NJ tube to his intestines has been put on hold.  Rudy decided he was done with his feeding tube through the nose this morning and pulled it out himself!  Not a big deal since it wasn’t being used for feeds anyway but Dr. Lee replaced it with and OG (oral gastric) tube through his mouth which is currently helping to vent his stomach and get rid of all the extra air that was causing his stomach to balloon quite a bit.  As a result, his stomach looks much smaller and feels much softer which must feel more comfortable to Rudy!

All in all, we’re in a good place respirtory-wise and the infections are treatable so I’m encouraged and optimistic!  We had a super time cuddling this afternoon and we’ll get another chance to cuddle tonight in front of a movie…Dr. Sonal brought us “Stardust”.  Happy 16-week birthday big boy!!!

Inauguration of our 44th President

Taking the oath of office...
Taking the oath of office...

 

Rudy slept through the whole thing...
Rudy slept through the whole thing...

 

 

 

 

 

 

 

 

The leadership of our country just changed hands and Rudy isn’t too interested.  I tried to talk him through all the significant patriotic moments explaining that one day he will stand with his hand over his heart during the National Anthem, etc…but he simply opened his eyes sleepily, looked into my eyes and fell back to sleep.  I guess those are life lessons for another day.

Today is a day of rest for Rudy.  Dr. Robert is back on the floor this week and he has postponed the stomach-contrast test and the NJ tube insertion because  Rudy has developed a low-grade fever and his white blood cell count has doubled so it is likely he is fighting an infection.  He is back on antibiotics and the order is to rest.  In the meantime, his vent settings will stay put and they’ll continue to hold off on his feeds.  So, we have a low-key day after all…I’ll drop an update later.

Happy MLK Day!

Rudy on MLK Day
Rudy on MLK Day

The switch in “parent watch” occured today when Rolf passed the baton off to me in the hospital parking lot as the family headed home to SB.  Rolf and Wilson had a great couple of days with Rudy over the weekend…Gpa Dick, Gma Jo, Max, Olivia and I made the trek down this morning for a little “family” time.  Rudy was a bit unsettled when we arrived.  Rolf was holding him and trying to calm him down.  As he has several times in the past couple of weeks, Rudy got increasingly agitated.  Rolf handed Rudy off to Gma Jo and he calmed down for a bit but soon started to get fussy again.  Rolf took the children to our favorite skate park in L.A. for a little outdoor fun and while they were gone, Rudy’s heart rate spiked to 234 and his breathing got to 100 bpm…I’ve never seen those numbers that high.  And as usually happens, he spiked a high fever and ultimately needed a couple of rescue doses of meds to get him calmed down.  He finally fell asleep after working quite hard for a couple of hours and he has been asleep ever since.   His fever broke after a dose of Tylenol and lying on a bed of ice for a good bit.  Hopefully, he’ll sleep soundly…Rudy is scheduled for a full day tomorrow.

They have stopped the feeds to his stomach again as it seems he’s unable to tolerate them…They started the feeds very slow and yet he vomited a few times since Rolf’s last post.  The plan for tomorrow is to do a test where they put contrast in his stomach to see if there is anything blocking the stomach’s ability to function properly.  Most likely, they will also go ahead and put in a NJ tube that goes from his nose, through his stomach directly to the intestines…allowing his feeds to bypass the stomach for now and go straight to his intestines.  Dr. Rick warned me of the possiblity of this last week and described it as temporary.  Because we were told at the very beginning that HLHS kids often have longterm digestive issues, I’m praying fervently that that won’t be Rudy’s reality and that his intolerance to feeds is temporary.  NO INTOLERANCE ALLOWED on MLK Day or any day, for that matter!!!

Although the focus has shifted to Rudy’s stomach, it is important to mention that everyone we talked to today is encouraged by Rudy’s lungs…the x-ray is looking good and Rudy doesn’t need the ipv treatments (to prevent the collapsing of the lungs) for now.  This is good news and we are grateful.  We praise God for the answers to prayer along the way in this journey of ours…thank you, thank you for prayerfully walking this long road with us.

Wilson finally gets his turn!
Wilson finally gets his turn!

 

Rolf, Wil, and Rudy  

Grandma gets her turn!!!
Grandma gets her turn!!!