One of the programs the pediatric department has to engage families and patients in their care and recovery is called the Pediatric Bead Program. Every week or so I’m given a checklist of treatments and I mark the ones Rudy had done the week before…things like “dressing changes, ETT or trach insertion, extubation, heart catherization, ICU admission, IV start, peripheral lab draw, procefure, surgery, PT/OT, test/scan, transfusion, line removal”, etc and Rudy gets a bead for every one. It’s a great program (especially for the older children) to help commemorate recovery milestones and open up communication for families as they talk about what each bead means. Well, today Rudy gets to add his 6th “Holiday” bead to what is becoming a very long strand. At the rate he is going, we’ll head home with a “bead curtain” reminiscent of the one my brothers had hanging in their room back in the 70’s…they were so cool!
Rudy had a relatively quiet day…OT and PT came by for treatments (two more beads), Dr. Dunn and the surgical team came by for a quick check-in, the cardiology team stopped by during afternoon rounds and took their look, the PICU resident, fellow and attending doctor all touched base with me and, of course, Rudy enjoyed visits from several of his nurse friends. Nurse Aliza went to Disneyland yesterday and thought of Rudy…bringing him a set of very festive mouse ears! (So thoughtful!) Hence, our spirited St. Patty’s Day greeting above. He also has a new sea turtle friend named Seamus O’Turtle thanks to our friend Sarah.
We’re so grateful for a fun day…and another solid one in terms of progress. Rudy’s feeds were bumped up to 10ccs an hour and he did well with three 3-hour trach collar sprints. There were no other changes ordered to his treatment plan. Our focus continues to center on feeds and vent weaning. Only one rescue dose of meds was needed this morning to calm him down and, like yesterday, he spent the rest of the day with stretches of being alert and calm and then drifting off to sleep for a couple of hours. I’m encouraged but also guarded about his progress with feeding so far…14 ccs/hr has been his breaking point in the past so I’ll be ready to celebrate when Rudy tolerates more than 14ccs an hour for a day or so (get that bead ready!!!). The fluid drainage continues to be minimal so if the output remains the same or lessens, the surgical team will recommend removing the drainage tube later this week. Dr. Dunn feels at this point the body will be able to absorb the amount that is draining! Yippy (tube removal = one bead)!!
Thank you for your prayers! What an amazing breakthrough it will be to get Rudy’s feeds firmly established…ultimately back on breast milk and then (still praying for) a go at nursing!!! May it be so…
In celebration of St. Patrick’s Day, I’ll leave you with an Irish blessing…
| An Irish Prayer |
| May God give you… For every storm, a rainbow, For every tear, a smile, For every care, a promise, And a blessing in each trial. For every problem life sends, A faithful friend to share, For every sigh, a sweet song, And an answer for each prayer |
For Rudy,
| An Old Cradle Song |
| Sleep, my babe, lie still and slumber, All through the night Guardian angels God will lend thee, All through the night Soft and drowsy hours are creeping, Hill and vale in slumber sleeping, Mother dear her watch is keeping, All through the night God is here, you’ll not be lonely, All through the night ‘Tis not I who guards thee only, All through the night Night’s dark shades will soon be over, Still my watchful care shall hover, God with me His watch is keeping, All through the night |
Rudy's Beat 
Not sure whether to pray for more beads (indicating progress) or fewer beads (indcating a homebound Rudy)…so I”ll just ask God to give you peace and comfort regardless! Glad today was a good day. We love you in Kansas!
Love the hat and ears. We will keep praying for feeds and beads and what ever else anyone needs.
Hugs and kisses.
Wishing you sweet songs to replace the sighs…..
What a cute little lepreuchan!
As the rainbows, smiles and friends add up……..prayers for all of you , also add up….peace, HLHS Grandma
Rudy is going to come home from UCLA looking like he spent a wild time in New Orleans for Mardi Gras! Bring on the beads!
I want some Mickey ears! Happy belated St. Patricks Day!! Im glad to see you are keeping up with the decorations. Give some extra lucky kisses to Rudy Patudy for me! love him to pieces. Go Rudy Go!
Okay Rudy, 14 ccs/hr and running. Peace of cake! Go Rudy go! You look good in green Rudy, however I am still partial to red. Actually bare chest looks good on you too! ha! Hey Rudy, you will be “outa signt” with a bead curtain in your room at home. Love, Cousin Dianna
Rudy’s beads will match Susie Krehbiels window beads in Kansas! So thankful that he is doing so well.
Gotta love the hat. Good for Rudy on his beads especially that it is for accomplishments. Go Rudy!
As Sal would say, its time for ‘stinky poop’. Now if those gs cookies start vanishing…
I was reading Rudy’s Beat just now when Miranda came in. She noticed the cute picture of Rudy in his mouse ears. She asked me to read the blog to her and then we prayed together for Rudy.
What wonderful Irish poetry. So relevant and hoped for.
Blessings to you. Rudy looks adorable in his festive attire.