Halloween has always been a fun time in our household but because it was our first holiday in the hospital with Rudy, the significance of celebrating Halloween together under one roof is not lost on me…the memories of that season are still so vivid!
We are so grateful for how far we’ve all come since then…today’s celebration included the traditional La Patera Hat & Mask Parade and, of course, trick or treating! Happy Halloween dear friends…and so starts the fabulous season of holidays!!! Yippy!
Much to my delight, it didn’t take much coaxing to get Rolf and the big boys to go to the pumpkin patch with me, Olivia and Rudy Thursday afternoon! Our local Lane Farms pumpkin patch has got to be the sweetest patch around…complete with a corn maze, hay ride and pot-belly pig! A trip to Lane Farms is a fun fall tradition and it pleased this mama’s heart to have the whole family join in the fun…
So we saw Dr. Harake today and Rudy’s heart looks about the same as last month…the leakage is still mild to moderate and the enlargement of the right atrium and ventricle remains the same. The plan for now is to sit tight, keep Rudy healthy this winter, pray his heart remains strong (essentially what we have been doing for the past two years)…and revisit the decision to pursue the Glenn in a year or so. Dr. Harake didn’t even mention a timeline for his next heart cath which I think is a good thing…it would be real nice to give him a procedure-free season for a bit, if we can…and continue to embrace each day as it comes. Happy Harvest dear ones!
The Wonder Boy really hasn’t skipped a beat (no pun intended) since losing the trach last week…his stoma is considerably smaller and healing nicely so far. We keep it covered with a bandaid and he doesn’t mess with it at all. It’s amazing to watch him move more freely and I see (or should I say, “hear”) noticeable improvement in his ability to articulate consonants. He’s a little chatter box!
Laying low at home for a few days served Rudy well, but it didn’t really end up being a quiet week for the rest of us. A string of unexpected things kept us on our toes and kept me OUT of my shop – not any jewelry making going on this week!!! I’m hoping I can carve out that holiday prep time next week – if I were superstitious, I’d be knocking on wood right about now!
Speaking of the unexpected, we’ve had a couple of unexpected good-byes this week…Rudy’s endocrinologist, Dr. Lifshitz, announced his retirement and it just so happened that we had our routine appointment scheduled with him already…so, Wednesday’s appointment turned out to be our last with him. Thankfully, we are blessed with 2 other pediatric endocrinologists in town so I’m certain Rudy will be in good hands but it’s hard to say goodbye to a key member of “Team Rudy”. Dr. Lifshitz, who manages Rudy’s hyperthyroidism, has been one of our more vocal cheerleaders…always affirming and always good for a reassuring pat on the back. I will miss him and his office assistant Kim!
We also got word on Monday that Rudy’s school nurse, Evelyn, was reassigned to another school and so Rudy will be getting a new nurse! We’ve been blessed with one great nurse after another so I expect Rudy’s new nurse will be no different but it is still hard to say goodbye to “a good fit”. Evelyn was wonderful with Rudy and we’ll miss her sweet, tender care. One of the interesting dynamics to my life with Rudy is that I feel like the members of “Team Rudy” (like his nurses, therapists, doctors and the office managers/staff of all the doctors offices we frequent each month) are my primary social community since I see them more than anyone else so when someone leaves, I really feel it much more than I should. (Ok, that sounds a bit pathetic but it’s true!)
We have an appointment with Dr. Harake tomorrow (Friday) afternoon and Rudy & I head back down to UCLA on Monday for an appointment with Dr. Woo (pulmonologist). I don’t imagine there will be much to report but it will be good to check in with both docs post-decannulation. Thank you for praying for Rudy’s adjustment…we couldn’t be more proud of him and the big sibs…they’ve all weathered the past couple of weeks well. Sleep tight dear friends!
We were happy to get home safely from LA yesterday just in time to love on the big kids and watch “Modern Family” with the boys before heading to bed but we’re definitely feeling the effects of the adrenaline rush of the past three days today! Rolf and I woke up groggy and unfocused – unmotivated to jump back into the fast pace of life at home and work – Post Adrenaline Rush Let Down, I guess.
Rudy continues to do well…he, too, is a little groggy today but we both enjoyed a quick trip to Livy’s school during morning recess at Livy’s request. 🙂 Now we’re home again and getting things picked up and put away…a little laundry, alotta paperwork and some reorganizing of medical supplies are on today’s agenda.
Dr. Shapiro warned us that some of her pediatric patients have difficult adjustments after decannulation – almost like losing a binky. Thankfully, Rudy seems pretty content without the trach and giggles when Daddy tickles his bare neck with his beard but he is NOT very content to keep his nasal cannula on. I thought he had already made that adjustment but it must feel different to him now so it’s time to bust out the tape again.
So, we’ll rest up, catch up and get back into the swing of things over the next couple of days. With decannulation behind us, it’s time for me to spend some serious time in the shop building up my “Silver By Trish” inventory for the holidays! HOLIDAYS?! YIKES!!
Love you dear friends…grateful for your prayers this week!
Around dinner time yesterday they asked if we would mind moving. We had to laugh as we got welcomed into our old stomping grounds and rolled right into our old room (people know where to find us). We had a pretty peaceful night–so much so that in rounds this morning they decided that we could go home early! So, the wheels are in motion. Allowing for standard hospital-time delays we should be heading out mid-afternoon.
A well-meaning child life volunteer stopped by yesterday with a really cool action figure…that scared the heck out of Rudy. We devised a much better alternative this morning with “Happy Glove Head” (TM). Thanks to the nifty expensive telescoping exam light we attached it to, it provides hours of entertainment and therapy!
It sure was a different drive down to UCLA this morning…Rolf and I both commented on how strange it felt to be heading to UCLA without a huge weight resting on our shoulders…it was all going to be pretty straight forward…bronchoscopy, removal of scar tissue if needed, decannulation and observation – DONE. No heavy consult with docs afterwards – just “get in”, “get it done” and “Wha-La! Finished”. And, thankfully, that’s about how it all transpired today. Dr. Shapiro said Rudy did well in the OR…he tolerated the anesthesia well and only fussed coming out of it as we would expect. She didn’t need to remove any scar tissue and the small granuloma present near Rudy’s stoma will heal over time, most likely, without intervention so it was a pretty effortless procedure today! We are so thankful.
Within 2 minutes of walking into the hospital lobby on our way to admit this morning, we ran into familiar faces…Dr. Shannon (who is one of many cardiologists at UCLA who weigh in on Rudy’s case during group conferences) and Dr. Reemsten (Rudy’s surgeon) both had really encouraging things to say about Rudy’s status and how great he looked. (Always fun to hear!) We ran into Dr. Kelly (CTICU Attending Doc) and Dr. Feinberg (CEO of the UCLA Health System) in the cafeteria while Rudy was in the OR and they, too, couldn’t have been more complimentary of Rudy’s progress. (LOVE IT!) Rudy had a relatively short stop in recovery – a bit fussy until Mom and Dad arrived – and was then transported up to the PICU. Dr. Rick just happened to be waiting for us and he got an update on the big sibs from us while Rudy’s nurse and the attending PICU fellow got Rudy settled comfortably. For all you long-time Rudy’s Beat readers, yes, that’s RT Oscar in the pic!!! He was part of the welcome wagon too!!! It was a fun reunion…
Remarkably, Rudy really hasn’t slept at all this afternoon so hopefully that means he’ll sleep soundly tonight. Dr. Shapiro has ordered TWO nights of observation instead of one so as it stands now, Rudy will be discharged and we’ll head home on Thursday. So far, Rudy is handling not having a trach great! He definitely notices something is missing and is trying to figure it out. Thanks for all the wonderful blog comments and texts today….so grateful for all the prayer and encouraging words! Today marks the end of something pretty significant and the start of a fun, new chapter in Rudy’s development, we pray!