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!!!

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.