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!

EEG fun (?)!

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…

Kickin’ it at Max’s hockey practice…
Watching the DP drum line and cheerleaders at the Bayou!
Livy’s Silent Auction favorite!
Rudy’s contribution to the auction…
Buddies

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.

No worse for the wear…

So, our simple Friday night date didn’t work out as we planned (Notice Trish’s pearls in last night’s picture?  We were actually going to take it up a notch for dinner, but I’m sure the ER team appreciated one of us dressing up a bit for the occasion.)  They let us out at 10pm–just in time for us to fall back seamlessly into the various kid pickups after the high school football game (Yeah, Chargers!–Big win!)

We’re so grateful for the ER team at Cottage.  Despite being repeat customers I don’t think we’ve ever had the same nurse or doctor, but they all take such special care of Rudy.  Once the intake nurse gets a sense of his history (the three-page packet we hand them when they start asking the intake questions gives them a quick understanding that this isn’t a typical patient), they get him into a room immediately and the docs listen very carefully and start making calls to the Team Rudy docs locally and at UCLA.  Can’t tell you how comforting this is as, with a complex history like Rudy’s, you just don’t want a new doc to come in and start making calls without knowing the big picture.

Rudy had a 10 minute focal motor seizure at Max’s hockey game and was pretty wiped out (as usual) and breathing really irregularly (more concerning), so Trish called me (I was coaching Livy’s soccer practice) and we decided to take him in.  His color wasn’t good and his lungs required lots of suctioning, so there was concern that he had perhaps aspirated some fluid into his lungs.  After some extensive breathing treatments, labs and a chest Xray, he fell fast asleep and the ER doc communicated with Dr. Dan (who doesn’t mind me calling on his cellphone when he’s on a weekend trip with his family–LOVE that), neurology and the fellows at UCLA.  The ER didn’t like the way his right lung looked and wanted to get a comparison chest Xray from his last visit at UCLA.  As that’s his bad side, there’s all kinds of stuff there from pleurodesis, etc, so we weren’t majorly concerned.  He was looking pretty good so they let us go home and we’ll follow up with neurology on Monday to see if the meds need to be adjusted.

He was a bit cranky every time anyone touched him, until he realized we were putting his clothes on him.  A big smile came out of nowhere and he waved and blew kisses to the nurses as we busted out of there.

Not the evening we planned on, but knowing of a couple heart families in our network are going through some incredible heartbreak right now, we’re grateful it was just a hiccup.  We’re also extremely grateful for the network of friends here in the community who jump in on the spot to help at times like this–finishing up soccer practice (Greg and Kara), running our kids to the places they need to get to (Lyn) and just caring so much about Rudy.

Big day ahead at the Bayou (the annual Rescue Mission benefit).  Gonna be awesome!  Stay tuned…

PS–Funny side note for heart parents–Out of instinct, we walked into the ER with a mental list of supplies we needed and immediately started working the RT for trache/breathing stuff.  Maybe it was the pearls, but the guy was way too easy a mark and we came home with about six months’ worth of supplies only to realize this morning that the trache is getting pulled in less than two weeks.  Contact us if you’re looking for something.  Some instincts are hard to suppress ;-).