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.

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.

 

  

‘Just a quick little post before I head back to Santa Barbara… 

Rudy did have the CT scan this morning (I’ve posted pics to show the boys how much it looks like something out of Star Wars).  Good News…things look better compared to the last scan.  There wasn’t anything detected that is a cause for concern regarding the lungs and fluid so we can continue to focus our attention on nutrition and weaning.

The results of the metabolic test did come back and as Dr. Rick suspected, Rudy’s caloric intake via sugar is too high.  Rudy needs the same number of calories he has been getting but through lipids (protein) instead of glucose (sugar).  Interestingly, making these calorie adjustments will ultimately help wean Rudy off the ventilator.  As I understand it, the body breaks glucose down into water and CO2.  The body needs a certain amount of CO2 but if the body produces too much CO2 then it has to work harder to get rid of it.    If Rudy is getting too much glucose then he produces too much CO2 and he has to breath faster and harder to get rid of it which makes it harder for him to tolerate the weaning process.  It’s not just about pumping him full of calories anymore… It’s a matter of fine tuning his “calorie cocktail” to meet not only his nutritional needs to grow and get stronger but also his respiratory needs.  It really is an amazing balancing act and I’m just really, really glad there are smart people around like Dr. Rick and Fellow Sonal and RT Oscar who understand the relationship between all these factors!!!  🙂  Phew…I think I need a Big Mac and hot fudge sundae from McDonald’s on my way up the coast this afternoon.

Rudy has been very calm this morning.  He was asleep when they transported him downstairs to the CT scan room.  When he came back, he was awake and alert and very content.  As much as I hate to leave him, I feel much better about leaving him today than I did yesterday.  He’s excited to see Daddy and Wilson this weekend and then Gma Jo, Gpa Dick, Max, Livy and I will come for a visit on Monday in celebration of MLK Day!  My folks have helped to maintain the routine at home for the past three weeks…we’re so grateful.  They’ll fly home next weekend in time for my Dad to begin his oral chemotherapy.  It’s not easy to be away from home when you’re in the midst of your own health crisis and that makes me appreciate my mom and dad’s willingness to come and be with us even more!!!!  Their time with us hasn’t been in the best of circumstances on many levels but it has been cherished time nonetheless.  Thanks Mama and Daddy…aka Gma Jo and Gpa Dick!!!!

Ok, I best wrap up and get ready to leave…’Gotta make room for all those guardian angels I just know must come to watch over Rudy in our absense. 

 

Well, it’s the end of another day and Dr. Rick just came in to check on Rudy one last time before the day shift ends.  It was a full day in the unit…LOTS going on in the hallway outside Rudy’s door with the trademark “quiet bustle” that starts to stir when things get busy.   Of course, busy usually means serious needs and that weighs heavy on my heart…always.  It must have been weighing heavy on Rudy too because he struggled some this morning finding a comfortable breath and heart rate.  He received a couple of doses of meds and by 2pm this afternoon, he fell asleep and soundly slept all afternoon. 

We come, now, to the end of another week and my question as I prepare to head back to Santa Barbara tomorrow is “where are we now?”.  Last week there was hope we would attempt to extubate early this week.  That didn’t happen and there hasn’t been any talk of how long it’ll get pushed back.  Two weeks ago the order to stop feeds to his gut was given until he is extubated.  Is that still the plan or does the delay in extubation change that?  What are the big risks now?  Last week there seemed to be light at the end of the vent-tunnel…and this week it feels like Rudy is marooned on vent island.  In my check-in with Dr. Rick, I’d say he is guarded but continues to feel Rudy is on a slow upswing…that’s encouraging coming from Dr. Rick.  I appreciate his perspective.

Although we didn’t talk specifically about extubation today, my guess is that it won’t happen anytime soon.  In talking with Dr. Robert last week, I believe at this point the key to extubating Rudy is sprinting.  We need to get Rudy back to sprinting 3-4 hours three times a day.  Rudy stopped sprinting last week because he wasn’t tolerating it well and was easily agitated.  We have reason to be encouraged by his vent settings of 14bpm and pressure support of 12 but we have stalled a bit.

This brings us to the issue of feeds…how much longer will they put a hold on feeding Rudy?  He had a metabolic test today and the test results should come back tomorrow.  The information gathered from the test will help the team determine the best nutritional/caloric combination for Rudy at this point.  The decision to stop the feeds until Rudy was extubated was, in part, to give the lymphatic system time to heal.  The problem with waiting too long is that TPN (the nutrition he gets through his IV) is hard on the liver over time.  So far the liver looks good and we certainly don’t want to compromise the liver’s health with too much TPN.  Dr. Rick wants to consider all this information carefully and come up with a plan to start feeding possibly with a feeding tube that goes through his stomach and directly to the top of his intestines.  Rudy was weighed today (see picture) and weighed in at 11lbs and .07 ounces!  He’s definitely growing!!!

So, damage to the liver is a potential risk but I think infection still remains the greatest risk.  Thankfully, Rudy only has three “foreign” lines right now…the ET tube down his throat into his lungs, the feeding tube down to his stomach through his nose and the IV in his left arm.  These are all potential sources of infection but thankfully his cultures this week have come back negative!

Lastly, Drs. Brian and Rick have ordered a CT scan of Rudy’s chest tomorrow (Fri.) morning.  They want to take a closer look at pockets of fluid that have accumulated on Rudy’s right side.  This mornings xray was about the same as the past couple of days but not as good as it has been.  Dr. Rick said that if tomorrow’s early morning xray shows a decrease in the fluid then he will cancel the order for the scan.  I’ll wait to return to SB once Rudy is safely settled back in his room if the CT scan does happen.  We’ll have to wait and see…that seems to be the case with everything I’ve listed here tonight so we’ll keep you posted as things continue to unfold.  Please pray that things will, indeed, unfold!!!

So sorry to leave everybody hanging but Rudy didn’t get his bubble bath last night afterall.  In the time it took me to get from Santa Barbara to L.A. Rudy got all fussy again causing his heart rate to soar and a bit of a fever.  Nurse Mary and I worked to get him calmed down when I arrived and she didn’t want to risk getting him worked up again so we let him rest.  Although I slept pretty good, Rudy fought a heart rate above 200 and the nagging fever again throughout the night so we settled for a sponge bath this morning at 5:30am.  Today has been much of the same.  I did get to hold him for 2 hours and although he was fussy when we started, he did calm down and fall asleep for a couple of long stretches as we cuddled (unlike last week when I couldn’t calm him down and we had to cut our time short).  He remains at 14bpm and a pressure support of 14 on the ventilator and Dr. Rick is going to leave him there…no weaning today.  Our hopes of an attempt to extubate will have to be put on hold for now.  I hope to post those sudsy, bubbly bubble bath pictures later today…standby!

Since we’re on the subject of baths, I have to share a special little “hug” from God I received this morning.  Although Rudy’s condition didn’t warrant drama last week, I was feeling pretty discouraged and I realize now that the discouragement was due, in part, to simply getting tired of the hospital routine.  I admit that I’m starting to get a little tired of the drive back and forth between Santa Barbara and L.A. as well as the soup downstairs (as yummy as it is) and the walk out of the ICU, down the hall and the wait to be buzzed back in again every time I want to go to the bathroom….etc.  But the thing that is getting the most tiresome is showering in that same bathroom down the hall outside the unit.  Now, don’t get me wrong, I’m REALLY thankful that I even have a place to shower and that I’m able to stay with Rudy at night but morning after morning for the past 2 months, I’ve woken up, grabbed my tub of toiletries and made my way to the only “public use” shower on the floor.  Sometimes I have to wait my turn and sometimes I’m lucky enough to find it empty but always I have to do a bit of cleaning before I can begin.    I’ll spare you the details but, let’s just say, people don’t give a whole lot of thought to how they leave a bathroom when they are finished.   Icky by a normal person’s standards…worse for someone like me with MILD O.C.D. tendencies (no wisecracks Rolf!).  Well,  I made the walk down the hall this morning dreading my trip to the “spa” when I opened the bathroom door to the strong scent of “Pine Sol”!  The shower room was clean and well stocked with t.p. and papertowels and I was in “hospital heaven”!!!!!  Call me a simpleton but it made my day!!!!  You know what they say, “Fresh Undies, Fresh Outlook!”.  No, nobody says that, I just wanted to see if you were paying attention.  🙂

So, today is a new day and we forge ahead in the fight alongside Rudy and trust in his continued measurable progress.  Thank you for loving him…and us…in this journey!

For those of you who have school-aged children in your life, you’ll know the significance of “100 Days of School”.  Every year for the past 7 years at least one of our kids has come home with the assignment to count out 100 kernels of corn or pieces of pasta to paste on construction paper OR they’ll parade out of school proudly wearing a “100 Days” hat they made that day in their classroom to commemorate the 100th day of the school year.  Well, I’m not sure Rudy can count out 100 pieces of bow tie pasta (maybe we’ll try 100 M&Ms later!) but today does mark his 100th day at UCLA (1 day in labor & delivery/NICU and 99 days in the CTICU).  I think we’ve mentioned before that Rudy has the distinction of being the first and remains the only occupant of room 5439 in the new Mattel Children’s CTICU.  Reaching 100 days in the hospital isn’t exactly the happiest of milestones but it does mean 100 days of life for Rudy for which I’m deeply grateful…so let the celebration begin! 

Today started off with a vagal-episode which happens when secretions impede the flow of oxygen to Rudy’s heart causing his O2 sats to plummet and his heartrate to spike, initially, but if it is left unattended the lack of oxygen causes the heart rate to lower and that’s bad.  This happens periodically and it has happened a couple of times in the last 36 hours.  It’s easily rectified with a “bag-vent” and suction and, thankfully with Rudy, once he is treated his numbers bounce back but it’s still unsettling to watch.  I woke up this morning to the alarms of the vent and monitor when Rudy started to vagal so I started the day a bit disoriented.  Once they got him cleaned out, the RT started Rudy on a two-hour sprint but he got tired after 45 minutes.  Right now he is resting on 20bpm but they’ll drop that rate back down to 10bpm in a little bit and try a sprint again later.

Although these episodes have postponed his sprint schedule, they have not interrupted his vent rates.  Aside from the little break he is getting right now, Rudy has held steady at 10 bpm with a pressure support of 10 most of the week so, all in all, Drs. Robert and Brian feel we are still making progress.  I’m not sure if any of this will postpone the extubation attempt early next week.  We’ll have to wait and see.

I’m planning to head back to SB early this afternoon.  I hate to leave Rudy, though.  The past couple of days have been a little unsettling and I’m paranoid to leave him so hopefully he’ll stabilize and find a comfortable place and stay there until Daddy and Maxi come tomorrow (Saturday).  Please pray for Rudy’s strength and his ability to recover quickly from any kind of episode.  He needs to learn to calm himself down eventually when he gets upset or agitated.  He certainly has alot of opportunity to practice!  Go, Rudy, Go!!!!

Rudy turned 14 weeks old today!  I’m so proud of him…I’m proud of his will to fight…I’m proud of Wilson, Max and Olivia and their will to remain strong and keep up life’s routine in our prolonged hospital stay with Rudy.  I remember sitting with Rolf and the kids in a restaurant in August shortly after Rudy’s diagnosis talking about how it would take a commitment from us all working together to give Rudy a chance at life.  I’m not sure they really understood what that meant at the time…I’m not sure any of us really understood what that meant…we’ve already been stretched beyond what we imagined…Rudy’s endured more than we ever imagined…and yet, I’d say, our family is thriving in the midst of it all.  We are learning and growing and, in the long run, will be better for all that we are experiencing.  Rudy is learning and growing too…and although his journey so far has been one challenge after another, his opportunity at life is due in part to three siblings willing to accept “doing life” differently eventhough it’s really hard at times.  ‘Something I can’t wait for Rudy to understand when he’s older.

Today was much like yesterday.  Rudy continued at 10bpm on the ventilator and tolerated 3 one-hour sprints.  He did struggle with a high heart rate over 200 for a long stretch this afternoon but, thankfully, it did not compromise the progress he has made on the vent.  He also spiked a high fever again so he’s back on antibiotics until the cultures come back.  It’s hard to determine what is causing what…is he fussy and battling a high heart rate because of the high fever or is he spiking fevers  because he’s upset and fitful?  It could be infection, it could be withdrawal, it could be him being a normal baby or it could be the start of another “issue”…it’s simply hard to know with Rudy.  Although he is off most of  his heavy-duty drugs, he did need a couple of “rescue” doses of methadone today to get him to calm down and his heart rate back to a safe range.   His struggles yesterday and today are concerning but don’t feel like past setbacks which is good. 

The plan is to increase the sprints tomorrow to 90 minutes.  I hope to hold him as our time today got cut short because he couldn’t settle down.  The only thing that helped at all was the pacifier…he loved the pacifier again today.  He sucks so hard but can’t keep the pacifier in his mouth because the ET tube gets in the way.  Nurse Denise and I tried to solve the problem with tape as you can see in the ridiculous picture below but it didn’t work.  Poor thing…he puts up with alot in our trial and error attempts.  I realize I’m at a bit of a disadvantage not “knowing” my baby prior to his hospitalization.  His likes and dislikes, what works with him and what doesn’t is all a guessing game at this point.  There’s alot to learn now that he is starting to behave like a normal baby…I gladly confront that big learning curve!  🙂