Medical Update

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We are excited to report that we finally heard back from Dr. Woo’s (pulmonology) office with the results from Rudy’s April 16th sleep study and the word is “he did well”!  We have an appointment with Dr. Woo scheduled for July 9th so we’ll get a chance to talk with her directly and get more details then but for now we are grateful for encouraging results.  Unfortunately we won’t be able to start the process of weaning Rudy off the trach right away because Rudy’s next heart cath is so soon and if by some miracle it is determined that Rudy is a Glenn candidate after the cath, then the docs would prefer to keep Rudy trached as it’s much easier to vent him during procedures with the trach.  So, we’ll have to wait a bit more and see what develops in the next couple of months.

It was confirmed today at Rudy’s monthly cardiology appt that his heart cath is scheduled for August 1st at UCLA…he’ll be the first or second case on the schedule that day and, most likely, need to spend the night for observation.  Rudy’s heart looks about the same…Dr. Harake did report that Rudy’s right atrium is quite enlarged.  This is a rather common complication with HLHS hearts but he did say that this along with the coarctation of the aorta and the pulmonary hypertension are all potential obstacles to a successful Glenn.  We’ve talked about Rudy’s enlarged heart before but he seemed to indicate that the right atrium appears larger.  We’ll likely discuss this more after the cath but it’s a helpful (and somewhat sobering) reminder to us that success in treating Rudy’s pulmonary hypertension (which is what we’ve been focused on for so long) won’t necessarily give us a green light to the Glenn…there are quite a few variables that need to align to give Rudy  a chance at a successful Glenn procedure.  I really wish we could simplify the situation to a couple of neat and tidy “bullet points” that make all the information easier to digest but even in layman’s terms it’s complicated and that feels a little heavy.  (big sigh)

Sadly, today was also Rudy’s last day with Nurse Marecar.  Although nurses moving on is a common and understandable occurrence, it’s never easy to say goodbye to a special care-giver and adjust to someone new.  Nurse Marecar was Rudy’s school nurse who rode with him on the bus, accompanied him in the classroom and rode back home with him.  He was  happy to see Nurse “Keg” each school day and she will be greatly missed.  We wish her well, though, and thank her for her sweet care of Rudy these past 5 1/2 months.

Thank you Nurse Marecar!

Tomorrow we welcome Nurse Cat to “Team Rudy” and look forward to getting to know her more as she has committed to Rudy’s school gig for the summer.  Ever humbled and grateful for the village it takes to educate our son!  🙂

Thank you all for your commitment to pray!!!  There is much to praise God for – always – and much to continue to pray for – always!  Ever grateful for YOU…

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4 Responses to “Medical Update”

  1. Pat Says:

    Special prayers for everything to align perfectly for your cute little guy !!

  2. Grandma Jo Says:

    Rudy, you are in the palm of God’s hand and we trust His will for your continuing progress. Every day new medical procedures unfold and our prayer is that some of them will be for your continuing development and care. Hang in there Mom and Dad. Your family is much loved.

  3. Grace Niklasson VanNortwick Says:

    Thankful that Rudy did well on his sleep study!!! Will continue to pray for all the many things to line up for the Glenn. I also pray for continued joy despite all the “heavies” of this journey!

  4. winny Says:

    Prayers for the upcoming cath!!!

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