You may have picked up that birthdays in the Geyling household tend to be celebrated over a “period of time” lasting longer than the 24 hours of one’s actual birthday. So it shouldn’t seem odd that Rudy’s 2nd birthday celebration officially kicked off today at a party with Max’s class at La Patera Elementary. What started out as a humorous suggestion by one of Max’s classmates on Monday turned into a classroom birthday bash today complete with pizza, veggies and…party favors!!! A BIG thank you to Miss Grant and her class for their thoughtfulness (and to Brandon D. for the bday toast!). We’re all about making special memories and today’s celebration is a good one to add to the list! 🙂
There’s quite a bit to be excited about right now…a fun visit with Grandma Jo, Rudy’s Birthday, SBRM’s annual fundraiser at Dos Pueblos Ranch THIS Saturday (so much fun), the Heart Walk coming up next weekend AND…football (both professional and Max’s YFL season)! It doesn’t get much better than football in the fall…right Rudy?
There’s certainly more fun to be had and we’ll post an “official” bday post tomorrow but unil then…thank you for sharing in the pre-bday fun with us and thank you for your significant role in Rudy’s success and progress…we wouldn’t be where we are without the countless prayers that have been offered on Rudy’s behalf!
The docs told us several times that, due to what Rudy had to endure at the start of his life, he would have his own unique developmental time line. That’s certainly been the case. The milestones come slowly, but they do come.
About a month ago, we realized that sponge baths were getting kind of difficult. Due to his compromised health and this trache and G-tube being potential sites of infection, regular hygiene is a big deal (having a Mom who’s borderline OCD works in his favor here). We don’t have the biggest of kitchen counters to begin with and Rudy has become very good at grabbing for things and knocking them down. So bath time became a sort of juggling routine of trying to control his squirming, catching items (sponges, medical supplies, dish soap, the phone, the fruit bowl) before he knocked them over the edge, and then–oh, yeah–actually getting him clean.
So, now that he can sit up pretty well on his own, we finally decided to see if we could skip the sponge bath and put him in the sink. While we captured the first couple of times on video, we thought it would be cruel to post that as he HATED it. We suspect there was something about the new sensation that just wasn’t suiting him. But that’s where having a skilled in-home therapist at home sure is handy. Olivia loves taking care of her little brother and he clearly loves her attention. Check it out:
We’ve got a big bathing boy, who even likes to splash around in the tub! Astute Rudy fans might recall that this isn’t Rudy’s first foray into the bath…but look how far he’s come! Stay tuned…if he keeps growing this way we’ll have to transition him to the actual bathtub before too long!
Thanks everyone for your prayers. The antibiotics seem to have done their magic and, with the demise of ED and EFD, Rudy’s diapers are holding containment and the smells emanating from there are the usual kind.
We laid lower than usual for the past couple weeks, but as Rudy got his spunk back, we ventured out to have some fun. Down at Ventura Harbor on Saturday, Rudy was intrigued enough by the car ride to tolerate the din of the arcade:
Back home on Sunday, he felt up for taking his own set of wheels out for a spin. Check out that leg strength–Fred Flintstone’s got nothing on him. Not to mention that back and neck strength!
Cars are cool! Especially red convertibles. The same cannot be said for red trains:
After all, you can’t sit behind the wheel of a train and hoot and holler. No girls can hear you…you need a convertible for that!
I’m ashamed to admit that I really didn’t know exactly how the heart worked before Rudy’s heart defect was diagnosed. I knew that it pumped the body’s blood to where it needed to go but beyond that I really didn’t give it much thought and, truly, took the heart for granted. Even after Rudy’s diagnosis, I had to reread the “If Your Child Has A Congenital Heart Defect” booklet we received from the cardiologist a few times to wrap my brain around what exactly was going on in our son’s heart and still couldn’t quite grasp the complexities of it all. As we prepare for the 2nd of Rudy’s three heart surgeries, I thought it would be helpful to explain (as best I understand) what’s going on in Rudy’s heart and what will be asked of it in this next phase of his treatment to kind of put things in perspective.
Rudy had his monthly cardiology appointment with Dr. Harake yesterday. The symptoms surrounding his pneumonia diagnosis last week really weren’t addressed specifically but the issue of his general health is key as we approach his scheduled heart cath on October 21st. Should he get sick, the cath will have to be postponed so we are praying for a speedy recovery and good health from here on out – especially as we head into flu season. In regards to his heart, everything looks about the same and we will see Dr. Harake one more time in mid-October before we head down to UCLA for the heart cath. There is evidence, however, of the possible narrowing of Rudy’s aorta – a condition known as “Coarctation of the Aorta” which makes it hard for the blood to flow through this artery to the lower part of the body. This is something Dr. Harake has been keeping an eye out for and could be happening now because the aorta is not growing with Rudy. Dr. Harake and the team at UCLA will verify to what degree the aorta has narrowed during October’s heart cath and, if needed, perform a balloon angioplasty to open it up.
So, here’s my simplified explanation of where we’re at and what’s coming…
In a normal heart, the blood low in oxygen flows from the upper body back to the heart through the SVC (Superior Vena Cava) into the right side of the heart (right atrium and then right ventricle). The right side of the heart pumps the blood into the pulmonary artery which takes it to the lungs to get fresh oxygen. After the blood is refreshed with oxygen, it returns to the left side of the heart (left atrium and then left ventricle) where it is pumped to the aorta and taken to the body’s general circulation.
Because Rudy doesn’t have the left side of his heart, he is currently known as a mixed-blood baby. His oxygenated and non-oxygenated blood flows through the shunt that was attached in his first surgery (Norwood) – see diagram above. The Glenn procedure will begin the process of separating his blood. In the diagram above, you’ll see that the SVC that is bringing the blood from the body back to the heart is located in front of the pulmonary artery at a 90 degree angle. In the Glenn, the SVC is severed from the heart and attached directly to the pulmonary artery. Essentially, we’ll be relying on the blood from the upper body to “drain” it’s way directly to the lungs instead of being “pumped” to the lungs through the heart. The success of this procedure is dependent on good lung health as well as little blood resistence so the blood is allowed to drain into the lungs. (Rudy has been treated with two Pulmonary Hypertension drugs for the past 6 months to reduce this resistance)
I was rereading the history of one of our HLHS friends who passed away last year after his Glenn and his mom described it as “his body couldn’t adjust to the recirculation of the blood”. This was helpful to me because it reiterated the fact that we are completely rerouting the circulation of Rudy’s blood in this process…asking his body to do something that it wasn’t intended to do. We are asking A GREAT deal of his little half of heart and surrounding, compromised lungs! And so, it motivates us to pray…to pray fervently and specifically in preparation for the Glenn…whenever it happens. We’re doing all we know to do to keep Rudy healthy and strong for the Glenn but, ultimately, the success of this next big leap is out of our control. We pray for God’s continued protection and mercy AND perfect timing for surgery as we prepare to move forward.
We humbly ask you to join us in praying specifically for the things mentioned above…may our prayers weave a blanket of protection and comfort over Rudy that will prepare him and surround him in the weeks and months ahead. 🙂 As always, thank you…we are so grateful for you! Love and Hugs…
Thank you for all of the prayers and inquiries in the wake of our ER trip this weekend. Rudy is doing well and even has some bursts of energy and happy moods, but we’re generally staying close to home and going at a slow pace while the antibiotics do their work. Fortunately, the week has had a good dose of fun thanks to Oma and Opa’s visit and big sister’s birthday.
Even with our transparency on this blog, there are still some of the more private struggles that Trish and I have had to deal with that are embarrassing to share about. This week, we have been preoccupied with ED. One would think this would be an individual matter where the symptomatic individual can deal with the issue privately. But that’s not the way we approach things–for us, ED is a family issue. We all feel the burden of one person’s ED. As much as one might try to keep this private and personal, our whole family and even some of our friends have had to wrestle with ED and it’s implications. ED is a family condition and it’s pervaded our life this week.
That’s right, our family has been afflicted with Explosive Diarrhea (what did you think I was talking about?). That was the first symptom in the sequence of events that led us to the ER. Even if the first couple of times were just gross, the clarion report was impressive enough (not muffled in the least by a diaper) that instances of ED were greeted with delight by Rudy’s older siblings. Once it became evident that these episodes far exceeded the containment capabilities of modern diaper technology, the novelty wore off and a steady stream of laundry cycles began.
After returning from the ER, we thought that we might see changes for the better after the first few doses of medication took effect. Our observations were quite the opposite, such that we placed some follow up calls. These revealed that antibiotics not only exacerbate ED but actually add some new wrinkles as far as consistency. So now our struggle is with EFD. Explosive. Foaming. Diarrhea. Picture the worst, then welcome to our world. We only hope the antibiotics run their course soon…for Rudy’s sake and ours! The good news is we have plenty of crib bedding, detergent and diapers in good supply. The bad news is the garbage men just may plain refuse to pick up our cans this week. So sorry Allied Waste Management!
Perhaps it’s too late to do anything about the visual images this post has put into the reader’s mind thusfar, but let me attempt to do so by documenting some of the happy distractions that carried us through. We had a fun visit with Oma and Opa (and much appreciated the help in moving sets of bedding through the laundry). And today Rudy’s big sister turns eight, so we’ve been celebrating that most of the week.
After several hours and a number of tests in the ER here in Santa Barbara, it looks like Rudy has pnuemonia. Once his fever was under control, Rudy stabilized and the ER physician felt comfortable prescribing a course of antibiotics on an outpatient basis and sent us home. It’s 2:30am, Rudy is resting comfortably in his own bed and we are relieved. The pnuemonia diagnosis is startling but sure confirms our decision to take him to the ER. We’re grateful for the care Rudy received at Cottage…the staff there took us and the situation seriously but also evaluated everything within the context of Rudy’s baseline…a healthy balance. Tonight’s trip to the ER was our first unscheduled trip to the hospital since we brought Rudy home from UCLA in May of 2009 and our first visit to our local hospital. The staff at Cottage was in communication with the team at UCLA and everything went very smooth. There is so much for which we’re grateful…we’ll lay low for the next few days, keep a close eye on him and follow up with Rudy’s docs this week. Thank you for your continued prayers…
A three-day weekend with beautiful weather is always welcome. Even better when it includes visiting grandparents and the start of Max’s football season (go Goleta Chargers!). Yet we’ve been preoccupied with our little Rudy. He stools started to get loose on Friday morning (all kids get that–it’s probably nothing, right?) He started to get a little fussy later in the day (what baby doesn’t occasionally do that–it’s probably nothing, right?). More diarrhea and lethargy all day Saturday led us to consult with UCLA (who use bigger words to speculate that it’s probably nothing, right?). Today brought a low-grade fever and a pretty unhappy boy (please tell us it’s nothing). We’ve been on the phone with different folks over the last couple hours (it always happens on weekends), and since I’ve started typing this, we’ve gotten the recommendation from UCLA to head to the ER to have Rudy checked out (it’s probably nothing, right).
As we’ve learned from watching others, little bugs can be a big deal to little heart warriors. Please pray–we’ll keep you posted.
We’re enjoying a fun visit with Rolf’s parents. Rudy is pretty pleased to have Oma and Opa’s undivided attention during the day while the big kids are at school and Rolf is at work. 🙂 Rudy is also very pleased with Oma’s stellar sewing skills as his defective pacifiers are now repaired. You may recall from past posts that Rudy’s favorite toy is the Wubba-Nub pacifier (introduced to him by cousin Becky when he first came home from the hospital)…a cute, small-enough-to-hold stuffed animal with a pacifier sewn to it’s mouth. Rudy has about 6 of these little treasures now and in the past several weeks, he has managed to bite right through the nipple of the pacifier forcing me to cut the nipple off so he doesn’t choke on the little pieces he bites off. Well, clearly he is getting too old for the pacifier and yet developmentally he could still use the “self-soothing” benefits of the darn thing. So, we were getting pretty desperate as we were down to our last pacifier. Then yesterday Oma did her magic and managed to take off the old, nipple-less paci and sew on a NEW one…just like that…no special sewing machine…just a needle and regular thread through thick rubber! Well, at any rate, Rudy is back in paci-heaven with all of his Wubba-Nubs repaired with pacifiers we brought home from the hospital. Happy 23 Months Little Man!!! Enjoy those pacifiers while you can…it won’t be long before they go “Bye-Bye” like Wilson and Maxi’s did about 12 and 10 years ago!