Follow Up with Dr. Harake

Rudy had a follow-up appt. with Dr. Harake first thing yesterday morning.  His first words to Rudy were “Here’s the brave one…impressing everyone at UCLA!”.  We reveled in the post-cath glow a bit before he took a look at Rudy’s heart by way of an echo.  Rudy was uncharacteristically “squirmy with attitude” (a.k.a. uncooperative) which Dr. Harake laughed off as payback.  It took me singing a few rounds of “With Someone Like You” to get him to lie still for the echo!  Ha Ha

It looks like the aorta (where they performed the angioplasty)  is still narrow so Dr. Harake would like to see us again in 2-3 weeks (before he heads off to Peru on a goodwill trip).  Since the angioplasty didn’t open the aorta enough, we may need to consider a stent.  We’ll see…

Dr. Shapiro (UCLA ENT) called yesterday and we had a helpful phone consultation.  Dr. Dan sent her the cath results and she called to congratulate Rudy (love her!!) and talk about a plan to decannulate.  She agreed with me that it may be difficult to ever get an accurate sleep study out of Rudy since he is at the age where he will fight it (as he did this last attempt in May)!  She said there are cases where she will go ahead and pull the trach without a sleep study.  It’s a simple process…she’d want to perform a bronchoscopy in the OR first to make sure his airway is clear, pull the trach there in the OR and then monitor him in the hospital for a couple of days.  We’d be very open to going ahead without the sleep study and expect he would do well weaning off the trach so the plan is to resume sprints during the day where we cap the trach (we did these in preparation for the sleep studies).  We’ll cap him for a few weeks before consulting with Dr. Shapiro again and then go from there.  I just sooo appreciate Dr. Shapiro and her initiation with me…so often it’s us tracking down the doctors and Dr. Shapiro has always been quick to follow-up with us whenever she’s received new information about Rudy – SO HELPFUL!  🙂  Our appreciation for Dr. Shapiro grew this week when we received this little handwritten bday greeting from her for Rudy – SO SWEET!  Seriously, it’s the little things that speak volumes.  Rudy is so blessed to have such a gifted team of caregivers both at UCLA and here in Santa Barbara!

Birthday Greetings from Dr. Nina 🙂

Okay, we’re off to therapy this morning…Have a wonderful day everyone!

5 thoughts on “Follow Up with Dr. Harake

  1. Great news again, Trish…today on the Christian radio I heard that that the lead singer’s son of the group Sanctus Real has HLHS. Apparently he blogs about it regularly too, Hoping for the best for Rudy’s trach removal…

  2. So….if Rudy gets decannulated…Rudy could roll out right to the street! What a happy problem!!! That would be so amazing….we’ll pray to that end!!

  3. What an adventure! Hugs to all, Prayers for all.
    Hey Rudy: Happy Birthday eve eve eve eve. Usually we never go more than three eves, but you get an extra, for all the poking you’ve endured lately! Way to go big THREEE!!!!
    xoxo

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