Resting At Home

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…

RT Oscar and Nurse Abigail transported Rudy to his new room – which turned out to be his old room! ha

…And then it was time to be discharged! Dr. Harake was in the cath lab and made it just in time to say “hi/bye”…

420939_10151133737089213_644377390_n — The ceremonial throwing away of Rudy’s tracheostomy tubes!

Ahead of Schedule

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!

A Fun Day At UCLA!

Rudy is all smiles heading up to pre-op!

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.

Rudy with Dr. Shapiro during her pre-op visit…all systems go, go, go!

All done!!!! Rudy has such a pretty neck!!! Never really seen it without a trach-tie!

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…

Settling-in in the PICU with Nurse Abigail, RT Oscar and Dr. Rick!!! We LOVE seeing familiar faces!

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!

Rudy’s Out

TRACHE IS OUT!!!

Going to meet him now…wow!

Sent from my iPad

Smooth Sailing So Far…

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.

Bye, Bye Trach Supplies!!

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!

Fingers Crossed!

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…

Stella and Rudy got to hang out today while their big sisters played soccer…too sweet!

Moments like these help put all the silly frustrations in proper perspective…

Follow Up with Neurology

After Rolf and Rudy’s late night return from the ER last night, Rudy slept in to almost 10am this morning! We skipped his PT and OT appointments and I got a call into Dr. Corazza’s office first thing. Dr. Corazza ordered an EEG test at 2pm and then a face to face with him at 4:30pm. After two trips to the ER over the weekend, I was glad we were able to follow up with Rudy’s neurologist right away. The EEG clearly showed that the seizures are coming from the right central part of the brain which is why the left side of his body is affected. Sunday night’s seizure didn’t last as long as Friday’s but it was unsettling in that it extended into Rudy’s left arm and leg – not just in his face as in previous episodes. Dr. Corazza increased Rudy’s daily dose of Trileptal from 3 and 4 mls per day to 4 1/2 mls twice a day (from 7 total to 9 total). We need to wait for a couple of blood tests to come back from samples taken in the ER…if the numbers are good, then we’ll stick with the current med but if the numbers some back bad, then Dr. Corazza wants to add another medication in addition to the Trileptal. We’re not super keen on adding more anti-seizure meds as they could leave Rudy feeling pretty doped up but we also need to get these seizures under control…especially since they seem to be getting worse. We’ll wait and see what the test results reveal and pray, in the meantime, that Rudy doesn’t have anymore seizures!

Our weekend was yet another manic bundle of really awesome highs and disturbing lows…the Santa Barbara Rescue Mission’s annual Bayou fundraising event on Saturday was a wonderful success and quite inspiring & at the same time our hearts were burdened for Rudy, of course, but also breaking for a Make-a-Wish/Heart family we’ve been praying for all week…their story was covered by their local news. Caution! It’s truly heart breaking but also such a vivid picture of grace and strength…Mia McDonald video. Please join us in praying for this family as they make their way back home to Utah…ugh!

I tell you…everything about this weekend makes us hug a little tighter and embrace the little moments that make a day special even more! Here’s a few from this past week…

557149_10151111529229213_1709082787_n — Kickin’ it at Max’s hockey practice…

Watching the DP drum line and cheerleaders at the Bayou!

Thank you for your prayers this weekend…there is so much going on in need of prayer and knowing it’s all in God’s hands is truly comforting to me. 🙂 Bless you friends!

Neurology Monday

Sorry if I left anyone hanging. I appreciate the texts and e-mails this AM checking on us–my phone battery died. The ER doc was happy with all the labs so we got sent home at 1AM. Rudy slept like a rock and was still out when I left for work this AM.

We just heard from Dr. Corraza’s office (neurologist) and Rudy’s going to spend some quality time with him this afternoon. Rudy gets to wear the fun hat for 90minutes (EEG–and by "fun" I mean "kinda sucky"). Consult afterwards. At least there shouldn’t be any needles. Thanks for your prayers and concern.

ER Round 2

Was dozing on the couch in front of tonight’s football game when Max pointed out Rudy’s leg was shaking back and forth–another seizure for about 5 min–this one the first we’ve seen extending to his limbs. Max and Livy were pretty rattled. Trish stayed home and I (Rolf) came to the ER with him. Not sure why he can’t do this during normal business hours. It was a good weekend–arguably even a great one–thanks to an incredible Bayou yesterday and a 60th anniversary celebration for special friends today. Surreal how it can be bookended with stuff like this.

There are some pretty serious cases in the ER tonight (the CHP officers walking around and bringing family members in can’t be a good sign; the guy screaming at the top of his lungs is beyond unsettling). We waited a good bit before the doc came and I even had thoughts of unplugging Rudy and taking off. He was seemed OK, smiled at the couple nurses who remembered him from Friday and giggled when the doc tickled his toes to check his reflexes. I was even apologetic for bringing him in, but when they saw the video we shot (iPhone is a brilliant invention), they were pretty clear it was the right move.

Doc called neuro and came back with news I didn’t want to hear. Needed to take some labs. He was trying to avoid it since they took them Friday and we’re seeing neuro tomorrow anyway, but they just want to check sodium and digoxin levels before they send us home. Rudy was fast asleep and it ended up taking two sticks to get the blood they needed. Gave the Screamer a run for his money. Just. Plain. Sucks.

Going to have to wait an hour for labs. In addition to his hatred of the needles, Rudy has also protested every time he’s been placed on the bed–he doesn’t want to stay. So he’s fast asleep in his chair, save for the occasional catching-his-breath-after-a-good-cry noises, and I get the bed. We wait.