Life’s been running full lately with school, work, football and band. Makes the evenings at home few and far between, but today we got out in the cul de sac and did our thing. Rudy loves rolling himself around…likes it even better if Max does high speed fly-bys on the scooter.
So, the bad news is Rudy’s feeding pump broke on Thursday night and crApria can’t get us a replacement until Monday. It’s not a danger for Rudy but it does mean that Rolf and I have to strategically alternate feeding Rudy manually via the g-tube a couple of times throughout the night…a bit reminiscent of nights with a newborn again. Ha Ha Rudy doesn’t know the difference and sleeps through it all anyway…Rolf and I, on the other hand, are a bit blurry-eyed. After the alarm sounded at 3:00am last night (or should I say “this morning”), I couldn’t go back to sleep!!! BUT, there is a flipside…the good news is because Rudy didn’t have to be all hooked up to the pump last night, he was free to join the big kids in their weekly Friday night movie/slumber party! Olivia and Max excitedly set up the necessary blankets, comforters and pillows and proudly propped Rudy up between them. By 3am, Rudy managed to make his way to the foot of their set up on the floor but slept soundly all night long. Even Wilson decided to stay on the couch all night (he’s old enough now to prefer sleeping in his own bed and usually wanders off to bed when the younger ones fall asleep). Rudy woke up at 6am pretty giddy to find himself surrounded by sleeping sibs and systematically woke them all up by kicking on the cabinet under the T.V. Sooooooo fun!
I don’t know though…with school and sibling slumber parties, Rudy is getting a little big for his britches and typical toddler behavior is setting in! Today during his bath he said a very articulate “NO” to just about everything I tried to wash! Ha Ha And so it begins…
Today was Rudy’s first day riding the school bus to school! Because of Rudy’s need for supplemental oxygen, it is required by the district that he be accompanied by a LVN so the plan will eventually involve a LVN coming to our house, riding with Rudy to school on the bus, staying with him during his class time and then riding back home with him on the bus. That will be an amazing day but until an LVN is hired and all is in place, I get to go! My last ride on a school bus was roughly 30 years ago. -Ha I guess a ride on a yellow school bus can be a little mundane but there are two things that are special about Rudy’s bus…1. It has a cool wheelchair lift AND 2. His bus driver’s name is RUDY!!! 🙂 Rudy is originally from Haiti and very sweet to the three boys who ride this particular route with him…
We also managed to squeeze in a cardiology appt. with Dr. Harake this morning before school. The team of doctors down at UCLA had a chance to discuss Rudy’s 9/22 heart cath results and are all in agreement that our next step should be to schedule another heart cath in 6 months (tentatively scheduled for March 21) to coil the remaining collaterals. You’ll recall that Drs. Dan and Harake coiled two large collaterals during the 9/22 cath to control Rudy’s blood flow but there is actually a web of collaterals that have developed over time and the team agrees that it will be necessary to go in and coil as many as possible…once that is done, if Rudy’s O2 sats remain the same, no further intervention will be necessary and we can continue to wait for the lungs to heal. If his O2 sats drop, then it will be necessary to either put a stent in his Sano Shunt (the shunt placed in his Norwood procedure) to open it up and allow unrestricted blood flow or replace the shunt altogether with a larger shunt. It sounds like a reasonable plan to us. Today’s echo (btw, Rudy’s new word for the day is “echo”) showed the same narrowing of the aorta that Dr. Harake saw 2 weeks ago…the angioplasty didn’t open it up enough so a stent may necessary in the aorta as well. We’ll check in with Dr. Harake again in a month. In the meantime, he and a number of Rudy’s UCLA doctors are heading to Peru for their annual humanitarian medical trip…we wish them a safe and productive trip and good health for Rudy while their gone. 🙂
This weekend included a lot football (as they often seem to this time of year). It started with cheering for Wilson as the band played for the Homecoming game at Dos Pueblos. We kept it up with Max’s YFL game on Saturday afternoon. Even all that time in the sun didn’t squelch a pickup game from breaking out on the grass after a late lunch at Carl’s Jr. Rudy got so excited watching that he HAD to join in.
Get that kid a helmet and pads. He’d make a tough linebacker!
Rudy’s second day of school went well. He enjoyed several of the activities at school so much that he threw a couple little tantrums when teacher Christy started to wrap them up and move on to the next. That’s new behavior for our little sweet and happy boy.
He really liked painting and we are excited for next week when he’ll bring home his first masterpiece!
We’ve been on a pretty happy run of late–from the good news at the heart cath, to Rudy’s birthday, to the Heart Walk, and now the first week of school. Part of the fun is that we get to share this journey with so many people near and far thanks to this blog. Some of the most special people we get to share it with are families on similar journeys who are able to see the beauty and cause for celebration even in the midst of challenging circumstances. So we were especially tickled by a super-fun internet game of Udderball with Moriah (glad you’re back home!) and, as promised, a special birthday present from Gwendolyn. We aren’t planning any trips back to UCLA anytime soon, but when we do Rudy will be ready to weigh in on group rounds.
Thanks so much to these dear people and everyone else who continues to ride with us through all the twists and turns of the Rudy-coaster.
Rudy had another full day today…it started out with his OT and PT therapy at the CCS Clinic this morning. Tuesdays are particularly fun at therapy because we get to say “hi” to our sweet friend Gwendolyn (who gave him the CUTEST birthday present EVER…stay tuned!) After therapy, we had a quick lunch break at home and then we were off to Rudy’s first day of school. It was pretty special and nothing captures it more than a few pictures…
Rudy lasted all three hours and had a real positive first day. We’ll go again on Thursday and possibly try 3 days next week. The County Education Office is still working on hiring an LVN and arranging bus transportation so I’ll continue to accompany Rudy for the time being.
I promised Olivia a trip to Lane Farms after school to buy a pumpkin so we ended the day with a quick trip to their pumpkin patch…Rudy wasn’t particularly impressed but he did have a pretty long day. 🙂
School….pumpkin patch…farm animals…Fall is officially here! Happy Fall dear friends…
Rolf, Rudy and I started our day at 4:30am and were on the road by 5:30am to make our 8am appointment with pulmonology at UCLA. We were excited to finally meet Dr. Woo who recently joined the UCLA roster of pediatric pulmonologists. You may recall that we sought her out as a second opinion through our insurance a few months ago only to discover shortly after that she was going to be Dr. Pornchai’s replacement at UCLA!!! One of the reasons we wanted to talk with her specifically is because of her specialty in pulmonary hypertension and lung/heart issues.
We like her very much. She’s personable and easy to talk to. She was smitten with Rudy from the start and familiar with his case as she had talked with Dr. Dan before our appointment. In a nutshell, she feels our current drug therapy for Rudy’s pulmonary hypertension is the right approach. She is not too keen on the idea of weaning Rudy from the trach without him passing a sleep study but also recognizes the fact that it will be hard for Rudy to pass in the sleep lab environment so she is putting an order in for a home study. It will require him being observed and monitored 2 or 3 nights in a row but I think he’ll have a better chance of passing it at home. So, we’ll see her again in three months and in the meantime, we’ll work on getting the sleep study arranged.
After the heart cath, Dr. Nina (ENT) asked us to start capping Rudy’s trach again to get him used to breathing through his mouth and nose in preparation for decannulation. Because of Rudy’s cold, we weren’t able to cap him until this weekend. We had him capped all day yesterday and today and although he doesn’t like it at first, he does adjust quickly and seems to be doing okay with it. He is maintaining O2 sats in the high 70s/ low 80s…so we’ll continue to cap his trach during waking hours and hopefully this will be good practice for the sleep study too. Capping his trach, however, means he has to get his supplemental oxygen through a nose cannula and he fights us when we put it on. Olivia said the nose cannula makes her sad because it reminds her that Rudy has HLHS (me too Livy) so it’s an adjustment for more than just Rudy. Thankfully, he doesn’t mess with it much once it’s on so we’ll see how it goes. Rolf did a good job distracting him with a game of ball last night…
So, we have a couple of things to work on between now and the end of the year. In addition to all this, Rudy has his first day of school tomorrow! Considering the long day we had today, I guess we better sign off for now and get a head start on a good night’s sleep tonight. Sleep tight everyone…we’ll post more tomorrow.