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!
Here are a few more pics from our PICU visit…
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!
Looking forward to busting out of here!
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!
TRACHE IS OUT!!!
Going to meet him now…wow!
Sent from my iPad
8am call time at UCLA meant we could almost sleep in (compared to most hospital days). Got sent off by the big sibs, reviewed consent forms and then got gowned and ready to roll right on time at 10am.
Doctor Nina’s procedure actually takes very little time–most of Rudy’s time in OR will be anesthesia getting him to sleep and awake again. If everything looks good on the bronchoscopy, they’ll let Rudy wake up a bit and pull the trache. They need to get a better sense of his breathing without him being fully under.
Waiting in the dining room. Already lots of run-ins with some of the greatest doctors and nurses in the world. There’s a small chance they could see something that prevents them from decannulating, but we’re hopeful. Much easier to wait today than when they’re going into his heart.
Thanks for praying. Stay tuned.
So, we got the call to report to admit at 8am tomorrow morning and Rudy’s procedure is scheduled for 10am!! Woo hoo!! As I waited to hear back from UCLA, I couldn’t help but pull out all of our trach supplies and pack them away in faith that Rudy wouldn’t be needing them after tomorrow! 🙂 It’s a bit surreal and Rolf & I have nervous tummies tonight but we’re definitely excited….Olivia put it all together and said enthusiastically “Without the trach, Rudy can get baptized!”. Indeed, he can…and so much more!
We’ll keep “The Beat” posted with the latest tomorrow….thank you friends!
It’s Sunday night and a welcomed quiet night at the end of three really full weeks! In addition to a handful of doctor appointments with Rudy, this past week was also consumed with a bureaucratic tug-of-war that left me feeling exhausted and frustrated. I’ll spare you the details but it’s situations like this week’s dilemma or battles with crApria that are so stupid in the bigger scheme of things and yet cause the most emotional turmoil for me. It’s maddening!! But it’s time now to let it go and look ahead at this week and Rudy’s procedure at UCLA on Tuesday. Please pray that our plan to decannulate on Tuesday will happen as scheduled. UCLA Anesthesia called on Thursday to conduct the routine pre-op survey to go over Rudy’s medical history and the fact that he had a couple of seizure episodes last weekend was of concern. They would like to follow up with Rudy’s neurologist so we’re crossing our fingers that there isn’t any reason to postpone the procedure! We’ve waited so long for this and another delay would be pretty disappointing.
Rudy had a good week…he slept a little longer each morning and was a bit more mellow than usual but he was happy and active. He slept through his PT and OT sessions on Monday but made it on Thursday. Although he was VERY motivated to practice walking with his walker, his physical therapist and I noticed a distinct change in his stability. His left foot and leg were turned out prominently and pretty shaky when he put weight on his left side. It seems maybe he has lost some strength as a result of the seizures unlike what we’ve noticed before but it’s hard to know for sure. He isn’t lacking in desire, though…check out his workout today: (admittedly a long video, but it gives a pretty good idea of how hard and determined our little champ works).
He was also pretty proud to put on a show for us yesterday…this video just isn’t long enough…
Imagine how he’ll be able to sing without that tracheostomy!!! 🙂
We’ll keep you posted on what unfolds tomorrow…hopefully the call from UCLA giving us our call time for Tuesday!! Thank you for praying us through another trip down south. Blessings dear friends…
Rudy's Beat 