The Vent Blows.

The ventilator totally blows–literally and figuratively.  There have been some bumps over the last couple of days some of which led to Rudy getting put back on the vent late this afternoon.  This morning began with a likely unrelated concern over his kidneys as some of the blood pressure and antibiotic meds impeded their function.  Late yesterday, the team started him on Lasix and his renal function has steadily been returning.  We’ve learned his kidneys are hearty and resilient and they’re proving to live up to their reputation once again.

 

The team has naturally been watching his breathing very closely and grew increasingly concerned with the way his right lung looked on Xray.  They did an ultrasound which ruled out a return of the dreaded chylothorax, but that made it clear that there was an accumulation of mucus in his right lung.  Over several hours, they noticed he wasn’t able to cough much (which would clear the lungs) and appeared only able to derive benefit from one lung (which caused his oxygen saturation to fall lower than acceptable.)  While we could have waited things out longer, Dr. Robert felt it best to address the situation now rather than face a distress scenario later on.

 

Putting Rudy back on the vent allows the team to expand the lungs fully and effectively suction out the lung.  His time back on the vent could be relatively brief (we’ve come to expect this to mean a few days) so please pray to that end—that Rudy would have a good rest and that the treatments would help the lungs expand and function properly.  It’s tough to see Rudy have to be re-intubated after such a long stretch off the ventilator, but we have gained the knowledge from this week that Rudy can breathe on his own—there are no physiological issues limiting his lung function.  While here waiting for the relatively brief intubation procedure to be done, I just got a call from the unit that Dr. Robert decided to place an arterial line in Rudy so they could get accurate readings on blood pressure and saturation levels.  As it’s getting to be 6:30, it looks like I’m going to have another one of those pre-occupied dinners.

 

So the burden of waiting patiently is still ours.  I’ve wondered some about what it must be like for Rudy—to lie there patiently during the early months of life when babies are probably held more than not.  Holding him at any time is great, but there’s a rigidness about him when he’s intubated that greatly diminishes the cuddling one can do.  Fortunately, it took one of the necessary people for the re-intubation a while to get to the unit after they paged him, so I took the time to pick up Rudy once more and stood there holding him up against my chest for half an hour.  His little hands clenched onto my shirt and I felt his breath against my chest as his lungs worked back and forth.  I kissed his head and prayed that God would somehow extend the impact longer than the actual act.  I want him to know that this is what it means to be with Mommy and Daddy.  We’re not just two faces that come into focus more often than the others around the bedside.  I want him to feel the vibration of my voice from having his head against my chest instead of just hearing my words coming through the white noise of the ventilator.  It hurt to put him down, but my prayer as I did was that the feelings of being close to us this week would summon the instinct to fight his way quickly back for more.

 

Just to remind us all that this is temporary, here’s a couple of pictures and a video from the special moments these last few days.  We’ll look forward to many more!

0073

 

1-30-09
1-30-09

 

 

 

 

 

Daddy and Rudy 1-30-09
Daddy and Rudy 1-30-09

The Jury Is Still Out…But So Is The Tube! Happy 17-week Birthday…

All I can say is “Phew”…today has been a physically and emotionally draining day but good just the same.  At the time of my last post, Rudy was working hard to breathe on his own and Nurse Young and I spent a good bit of the day trying every trick in the book to get Rudy to calm down.  Various doctors were in and out checking Rudy, his numbers and his lab results multiple times.  The curious thing is that the test results and Rudy’s appearance didn’t match the numbers on the monitor…based on those, Rudy should have been purple!  Instead, he was pink and beautiful.  The big concerns were, as I mentioned earlier, his oxygen sats and the fact he was breathing so hard.  The sats were all over the map dipping down into the low 40’s at times which isn’t good and not going higher than the low-60s which isn’t ideal.  He did get a blood transfusion mid-afternoon and that seemed to help.  When I left for dinner, his sats were resting comfortably in the low-70s – better!!  We’re not out of the woods as Rudy’s little nose continues to flare and his tummy continues to retract with every breath but the RT did remove the ventilator from our room today which felt victorious.  After a certain amount of time, the ventilator is deemed “contaminated” and they have to remove it…if Rudy needs to be intubated again, he’ll get a fresh unit.  Rudy and I bellowed a hearty “goodbye” as if it’s gone for good nonetheless.

"Buh-bye!"
"Buh-bye!"
Rudy did need to get another OG tube put in through his mouth to his stomach today so he can get medications to his stomach and also to vent some of the air that he can’t get out.  He is tolerating it well probably because he’s used to having a tube down his throat!  Another tube means more tape on his face but you can still see his sweet lips!!! 
This tube is a piece of cake!
This tube is a piece of cake!
We finally found a comfortable position for Rudy…draped over a pillow on his tummy!  It looks pretty funny but it works!
AAAAAHHHHHHH!
AAAAAHHHHHHH!
So, we both end the day more relaxed than when we started it this morning. 
Happy 17-weeks Rudy and Congratulations on making it to 36 hours off the vent!
1-28-2009 - 17 Weeks
1-28-2009 - 17 Weeks

The Celebrations Continue…

The Call to Celebrate
The Call to Celebrate
The Morning Shift Change
The Morning Shift Change
Can I have some of that?
Can I have some of that?
Nurse Betty was so excited to see Rudy extubated that she  ran out to Ralphs and got some more sparkling cider for a repeat toast during the morning shift change!  If nothing else, this boy is loved! 
Rudy had a decent night but I think the jury is still out this morning.  Rudy is working a little harder and his morning xray looks “muddy” on the right side.  Although no one is running to get the vent, quiet, careful attention is being paid to Rudy.  He’s getting a RT treatment right now and they may need to get another xray so I’ll keep you posted as the day progresses.  Please pray that his oxygen sats will stabilize and remain high, that his breathing will calm and his tummy will stop retracting so hard. 
My shower is “out of order” today so I’m on the hunt for another shower on a different floor…the picture of me wandering around in my flannel pajamas, with my pink tub of toiletries is one I’m glad isn’t captured on “Rudy’s Beat”!

12 Hours and Counting…

We have surpassed twelve hours and although Rudy is struggling a bit right now he has been doing great all afternoon and evening.  What a day today has been!!  I’m excited but guarded…the first 24-48 hours will be the true test for Rudy but Dr. Rick was very optimistic when he checked on him this afternoon.  The sparkling cider glasses were raised in celebration during afternoon rounds and then again at the nurses’ shift change this evening.  Rudy has had a steady stream of well wishers come to see him all day…word spreads quick around here and, as always, it’s heartwarming to see the show of support among the staff! 

Celebration with the Docs during rounds!
Celebration with the Docs during rounds!
The celebration continues at shift change...
The celebration continues at shift change...
Nighty-night precious boy!
Nighty-night precious boy!
There wasn’t any talk today of the next steps…all focus is on keeping Rudy off the ventilator.  Please continue to pray to that end.  It has been said before but I’ll say it again…Rudy is such a fighter and, boy, we sure will have our hands full when Rudy is finally able to come home!  Bring it on, little man!!

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

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!!!