Time flies over the weekend…

by

Let me start out by apologizing to our dedicated Rudy’s Beat readers.  We miss one day posting and start getting concerned e-mails.  Thanks everyone for following our journey so closely.  We had a full weekend and, as you read below, time in Rudy’s room isn’t as idle as it once was, so it was harder to get a post in.

As much as we want to be with Rudy every minute of the day, we’ve recognized that Olivia, Max and Wilson have needs as well.  Part of this means giving them time with both of their parents together, so Trish got home Friday night in time for dinner with the men at the mission.  We lazed around the house a bit on Saturday morning until we went to watch Max’s first basketball game of the season.  Once that was done, I headed down to UCLA with Max as my sidekick as he said he was tired of weekends without Daddy.  This ended up getting us there just before dinner, which was later than usual as several of the nurses and doctors reminded me on our arrival–I wonder what these dear people would do without us to entertain them.  Of late, it seems that the unit has been very busy with lots of sick kids demanding long hours and attention from the staff.  So we sit calmly in our room and are grateful that there hasn’t been much buzz around us lately.  Always grateful for check-ins with staff when they stop by, but glad this isn’t driven by urgent needs for Rudy.

Rudy has been holding steady and the team is happy with his progress.  As Trish reported, Rudy was getting tired with the sprints and vent drops, so Dr. Robert decided to let him rest on a plateau of sorts–16bpm and he held this well.  It might feel like a bit of a letdown to stop the forward progress, but viewed in light of where Rudy was two weeks ago, it is a very different picture.  He held at this level well for the last two days and even let the team turn down the pressure support a bit (technical details I won’t get into, but also steps toward breathing on his own).  The chest Xrays are clear and the methadone has been turned further and further down to where he is very alert and interactive.  The downside of this is that he now gets fussy (as babies do) and needs to be entertained.  The only problem is we’re limited in many of the usual resources (carrying him, putting him in the swing, on his tummy, etc).  So he lies on his back, waves his arms and kicks his feet, which can result in him getting tangled in some of his lines.

I got to hold him for long stretches last night and today and he really liked it.  I was encouraged that twice today he got very agitated with his heart rate getting up near 200bpm, but we were able to calm him down without having to give him a rescue dose of sedatives or turn up the ventilator rate.  Max and I showed up this morning ready to watch the game with chips, salsa and the works.  Max got quite a few comments for showing up in his Giants helmet.  As for the game, I won’t say much about that, but it sure was fun to be there with two of my boys.  Max held Rudy for about 30 min and that was pretty cool too.

We left Rudy in the care of Nurse Amy and headed home, where we are now.  Everyone’s showered and ready for bed and I’m looking forward to the game we’re about to play, but more getting to my own bed thereafter.

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11 Responses to “Time flies over the weekend…”

  1. Uncle Alex and family Says:

    We are glad to hear all is well. It took a lot of restraint to not email for an update. I hope there are pictures of Max holding Rudy.

  2. Grace & Marlin Says:

    It was good to know that you were chilling with the fam…don’t ever feel the pressure to keep all your Rudy fans updated….the kids come first! (I have to admit it was good to hear that Rudy’s holding steady!)

    Love you much!

    The Van Fam

  3. Yvonne Lierz Says:

    I admit I was one of the worried ones but am so glad you spent the time with Wilson, Max and Olivia. Sorry about the Giants. My son-in-law felt the same. Your doing good Rudy.

  4. Pat Says:

    Glad to hear that you all had a good weekend. Still praying for Rudy.

  5. Jo Saraceno Says:

    The Giants? Is it still football season?

    So glad all is well and that you were able to be home for the weekend.

    Blessings on you all! Gooooooooooo team! Jo

  6. Wayne Pangelinan Says:

    Wow, I was referred to your blog by a friend. This has really touched me in more ways than one. I have children of my own and to think what you and your family go through, I admire the strength.

    I hope I am not intruding, but I find this blog inspiring. Thanks for sharing publicly. I too would like to say a prayer for Rudy. Gold Bless.

  7. Alana Says:

    Go Rudy Go…… So glad to hear the good news. Love to you all.

  8. Dawn Bettencourt Says:

    How true, it is so hard to give the other young folks of the family the time and love they need, when you have a HLHS young one going through such a difficult time……prayers and strength for you, from a HLHS grandma{Dawn’s mom}

  9. Marlowe Says:

    It’s so exciting to hear that Rudy is acting like a normal baby, needing to be entertained and more interactive. I’m praying that his steady progress continues and that he can be extubated soon, so that you can finally hear him cry! (of course, you might sometimes long for silence)

    Marlowe

  10. Cousin Dianna Says:

    Glad to hear Rudy is holding his own. Kicking his feet and waving his hands is good, huh?…one way to get attention and to be held. ha. The family is continuing to stand for clear lungs, good breathing and Rudy’s continued strength. Love, Cousin Dianna

  11. Tanya Obregon Says:

    Rolf, Trish & family,

    No need for apologies!! Sometimes you just need a break from absolutely everything just to regroup on all levels! God bless you, keep the faith, and stay strong!!

    Love,
    Tanya

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