We made it safely to FL and from the get-go we’re amazed at all the special things people do for wish kids. The pilot insisted Rudy come in and look over the cockpit. Livy squeezed in cuz she’s cute too. As cute as I made myself for the picture I never got a turn in the seat.
Almost too much happening to take pictures or blog, but so overwhelmed by God’s goodness to Rudy and our family. On with the fun!
We’re in a bit of a frenzy in these parts with the typical need to get a lot of things done before one heads out for a vacation. Between school, work, household and activities it does feel like all of us will have very full schedules up until departure next Thursday. We’re excited. Some of us are packing. Some of us were packed three weeks ago (guess who–also the same sick person who has the Valentines ready to go). Some of us have yet to pack (and won’t until after sundown Wednesday). Lots of ground to cover between now and then but that makes the prospect of settling into an airplane seat and breathing a sigh of relief seem all the more exciting.
In the meantime, there’s still the occasional impromptu moment where the kids are goofing around after dinner. I hear there’s pretty good entertainment in Orlando, but I’m not sure if they can top this:
There’s so much in store for us in the weeks ahead, but more important than all the cool attractions is the fact that we get to experience them as a family. Rudy is one of those kids that can’t actually articulate his own wish so when the Make-A-Wish granters interviewed us, we both felt clearly that his would involve the siblings he loves so deeply. There’s nothing like watching him light up even for the silly Chubby routine. Here’s looking forward to a week’s worth of golden moments!
It’s 12 am and time to wish you all a blessed and bright 2013!
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!
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!
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.
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.
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 ;-).
Rudy's Beat 