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.