In this “post cath” season of uncertainty and life in limbo, I mistakingly thought things would slow down a bit in regards to Rudy’s care. Although we’re not heading into the intensity of heart surgery and a long hospital recovery, life has definitely revved up for us with the multi-step process and logistics of weaning Rudy off the trach – a process known as “decannulation”. Last week’s procedure to remove scar tissue in Rudy’s airway was the first step. We made it home late Wednesday night and it took a few days for us to settle back in and catch up on stuff at home. Rudy was feeling and acting like himself by Monday and we’ve had a good week so far.
The next step in the process is a sleep study and we are blessed to already have it scheduled at Children’s Hospital LA (UCLA doesn’t have a pediatric sleep lab in which to conduct the study) Sunday November 28 – Monday November 29!! This is sooner than we expected so we’re pleased. In preparation for the sleep study, Dr. Shapiro (UCLA ENT) gave us a cap for Rudy’s trach so he can practice breathing completely through his mouth/nose. Because Rudy has been doing so well with the speaking valve (which allows him to inhale through the trach but forces him to exhale through his mouth) the adjustment to being capped has been a smooth one. What’s not been so smooth, as we predicted, is the switch to the nasal cannula. Boy, he is quick to get his fingers underneath the cannula and pull it off!! When he is capped and, ultimately, when the trach is pulled, he will need to get his oxygen through his nose. A little bittersweet for me because I’ve LOVED having his face free of tubes and tape since he got the trach in February 2009. When he came back from the OR that day, I remember how my heart jumped when I saw his face “tube-free” for the first time since he was born. 🙂
The trick to making the nasal cannula adjustment, we’re finding, is DISTRACTION which is where the big kids come in. Rudy’s sprints with the cap have involved high energy activity with alot of attention from the big sibs (see video below) – good for the body and soul!!! 🙂 So, we will continue with the practice sprints here at home, get signed off at the sleep study and then head back down to UCLA for a couple of days of observation when Dr. Shapiro actually pulls the trach (do we dare hope before Christmas?!). We expect Rudy will do great whenever it happens!
Emotionally, we’re still processing the “big picture” scenario…experiencing the pain & confusion & anxiety in waves…we have our good days and our bad days like with anything else, I guess. I’m grieving what feels like a set back but also acknowleging there is alot that is “unseen” in God’s plan for Rudy and the rest of us. ‘Just trying to remember to breathe sometimes with everything else going on…:) Thank you for your prayers dear friends!!! There is so much my heart is experiencing that I can’t even put into words…the assurance that God understands all that is going on in and around me is of great comfort.
13 thoughts on ““Operation Decannulation” Underway”
Always something, isn’t it, Trish?! So thankful that the assurance of God’s sovereignty in all things – including “your” things – is an everpresent reality for you. Great to hear that Rudy’s sleep study got arranged so quickly…just another blessing in the journey. Love you!
We are all praying for Rudy (my Tuesday morning ladies group), I print out your journal-ling and take it with me, so they are up to date on what is happening. Your entire family is such a blessing to each of us, and we feel blessed to be able to go before His Throne on your behalf. Keep, keeping your eyes on the Savior, He has a store house of blessings for each of you. love, Loretta and ladies
Rudy, Rudy, Rudy—great dance steps honey. You are such a trooper. Keep up the good work and try to leave the oxygen tubes in your sweet nose…okay? I am glad to see you have a great audience..thanks Max and Livy. Guess what? I love you!
How strong Rudy is getting! What a jumper! Hoping for a great sleep study! Praying for you all.
LOVE that video. You picked exactly the right song – he DOES get around! Oh, please just keep on doin’ what you’re doin,’ Trish. Loving that boy and taking one day, one step at a time. Many blessings as you do just that – step into the holidays, the sleep study, the transfer to nasal oxygen, the final removal of the trach. One day. One step. And lots of sweet laughs along the way.
I love that video. Rudy looks like he’s doing the River Dance……go little man, go! Thank you so much for keeping us all posted. Love you!
Jumping and leaping and praising God!
We send hugs, love, and we just keep praying.
awwww Rudy, you melt my heart.
He gets around!!!! So much energy…..and all from a feeding tube? Amazing! Can’t wait to hug you all!!!!
Loved the videos… Rudy has great rhythm.!! Loved the “drumming” video with Wilson and Rudy together…and Rudy’s jumping up and down to the Beach Boys music. Loved seeing his smiles and being so distracted with the fun activity that he did not pull out any tubes…YEAAAA.
You are a beautiful family and we continue to keep Rudy and all of you in our prayers. Warm regards to all the Geylings…
Gerd and Pete..
thanks for sharing, I felt like jumping with Rudy, But I can only imagine what all of your are going through emotionaly, prayers and love being sent to All, Nick’s Grandma
Thank you so much for sharing your journey and the wonderful video of little Rudy jumping, smiling and having so much fun!! You and Rolf are truly an inspiration to us and to so many others and we are priviledged to know you. Please know that we continue to pray for you and your family daily for physical, emotional and spiritual strength, as well as comfort and hope in Christ Jesus. We also continue to pray for little Rudy daily, and I, several times ecah day for him. Please know that Doug and I are always available to listen, pray, talk or help you, Rolf and your family in any way, so please feel free to contact us at any time, day or night. We love you all. Blessings, Maria
thinking and concerned about Rudy, how he is doing….prayers. Nick’s Grandma