It’s late and the house is quiet…all survived the first day of school and slowly but surely we are falling into a familiar routine again. As predicted, Rudy was pretty lonely after the big sibs left for school but he did take a long afternoon nap and was quite animated this evening with everyone home again. So sweet!!
Check out the proud pupils…
9th grader Wilson!
7th grader Max!
4th grader Olivia!
We’re off to a good start and trust this school year will be full of fun new experiences. Rudy’s new therapy schedule at the CCS (California Children’s Services) clinic starts next week so our new fall schedule continues to take shape. We’ll let you know how it goes. 🙂
Neurologist (check), Ophthalmologist (check), Gastroenterologist (check), Cardiologist (check), Endocrinologist (check)…the only one we’re missing is the Pulmonologist and we’re still working on getting that appointment with the new pulmonologist at UCLA so our checklist is nearly complete. Ha Ha
Our week of appointments for Rudy is over and most everything is checking out okay – no major changes but there is some new information.
Rudy’s seizures have stabilized and so Dr. Corazza (neurologist) would like to keep Rudy on the same dose of Keppra until we see him again in December.
I was eager to talk to Dr. Silverberg (ophthalmologist) as we hadn’t seen him in a year and I wanted to update him on the information we got in May about the brain insults to Rudy’s occipital lobe from his stroke activity since this is the part of the brain associated with vision. He’s so good with Rudy and so skilled in his exam. Unfortunately there isn’t much we can do at this point to determine if any of Rudy’s fields of vision have been affected by the brain damage…we just need to wait until he gets older. The good news coming out of ophthalmology is that Rudy doesn’t need glasses at this time after all. Dr. S felt his astigmatism was significant enough last year to warrant glasses but wanted to wait to prescribe them and now he feels the astigmatism is lessening which means no glasses – yippy! 🙂
It’s always good to check in with Dr. Kelts (gastroenterologist) as he is my “big picture” guy. Although he helps us manage Rudy’s g-tube and feeds specifically, he also keeps an eye on Rudy’s overall condition and addresses specifics as needed – so helpful. For example, we’ve been concerned that Rudy’s chest incision has never fully healed…there is a pesky little suture that never dissolved or receded as it should have and I was advised to trim it the next time it surfaced but because of the perpetual oozing wound and scab it produces, I could never get to it to trim it. It’s kind of a minor issue and somewhat unrelated for the majority of Rudy’s specialists to address but Dr. Kelts noted it immediately and when he asked me about it, I asked him if we should try to find a wound care specialist as we were having a tough time resolving it ourselves to which he responded “I’m it”…he quickly prescribed a topical medication and said if we can’t get to the suture after it heals, then we’ll take care of it surgically once and for all. THANK YOU!!! It sounds simple and stupid but there are certain things in Rudy’s condition that don’t fall under any specific doctor’s umbrella and because we have, essentially, two teams of doctors in LA and SB, there are times when a doctor is reluctant to act as not to step on another doctor’s toes or interfere with another doctor’s treatment. It is an interesting little dynamic we deal with at times which is why I appreciate it so much when a doctor like Dr. Kelts comes in, takes the bull by the horn and attempts to make things happen for Rudy that are long overdue. 🙂
The other symptom Dr. Kelts noted was how dusky Rudy looked which brings us to cardiology…It has been a subtle change but I’ve noticed in recent weeks that Rudy is a bit bluer than usual although his O2 sats aren’t dramatically different. Dr. Harake took his time and did a thorough echo. He didn’t see a huge change but he would like to see Rudy again in a month and he would like to get a heart cath scheduled for this fall. Eventually, Rudy will outgrow the shunt that was placed in his heart during the Norwood procedure when he was 5 days old. It will be a gradual process and could be happening now which would explain him getting duskier. Right now Rudy’s O2 sats register between the mid-70s to low-80s. The need to act will come when his sats drop down to the low-70s to high-60s. When that time comes, there could be the option to put in a larger shunt. We always assumed that putting in a larger shunt would buy us more time allowing Rudy’s lungs to mature and get him “Glenn-ready”. However, in talking with Dr. Harake yesterday, he explained in more detail that choosing to replace the shunt would actually put the Glenn further out of reach as a larger shunt would increase Rudy’s pulmonary pressure which is why he’s not a candidate for the Glenn now. Wait…What? This is a new and very significant piece of information that changes the mental game for me and Rolf…we need to take the time to research this and understand it better but it is a bit sobering. We always thought the decision to get Rudy a larger shunt would be a way TO the Glenn not instead of it. The reality is we’ve never really had “choices” where Rudy is concerned…all throughout this journey we’ve only had one treatment option when the need to act came along and so there is no point in obsessing over the “what ifs” to come but it was nice to feel like we had a “safety net” of sorts…to feel like we could buy some time with a shunt replacement. As Dr. Harake reiterated yesterday, we will make the best choice for Rudy with the treatment options that are available to us at the time we need to act and that needs to be our focus but it sure is hard not to get consumed by the frightening unknowns hidden in that simple objective! Although not panicked, our minds are swirling again and my heart is burdened – at a time when I want to emotionally circle the wagons and protect Rudy and our family, it’s actually time to start another school year and physically scatter everyone all about…to different schools and all kinds of activities.
Today is one of those days when I don’t want to be a grown up! 🙂
The first available heart cath is October 6th which is only two days before the Heart Walk so we’re hoping for an alternative date…we’ll keep you posted.
We’re bracing ourselves for a full fall…thank you for supporting us in prayer! How indescribably grateful we are!!! 🙂
Greg Lawler strikes again! While the rest of us watch TV he spends his more conventional evenings with his photography but sometimes he likes to spice things up a bit with some beekeeping, chicken-farming or metal-smithing. His latest pursuit was to try and take high-altitude pictures of the earth. Apparently no ladders of sufficient height could be found so he sent a balloon to 95,000ft (“near space”–3x higher than planes fly!) and took all kinds of pictures and video.
In addition to the images, Greg and his partner Geoffrey conducted a ground-breaking experiment on what happens to a marshmallow and a Twinkie at high altitude. They thought it would be fun to take Rudy along for the ride, so we now have three very special Rudy bracelets that have been to space. You can watch a really beautiful video if you click here or follow the below. Who knew watching some silicone bracelets sitting between a marshmallow and a Twinkie could get one misty-eyed?
Reality is setting in as we start a full week of marching band camp for Wilson, daily football practices for Max, final school preparations and FIVE doctor appointments for Rudy…all a bit tough to engage in after the fun of the last two weeks – our grand summer finale! We enjoyed the luxury of hanging out with my brother and his family from Kansas for 4 whole days during Fiesta here in Santa Barbara and then we headed up the coast a couple of hours for a 4-day family getaway in Morro Bay. Rudy, in particular, has enjoyed all the special attention he has gotten this summer from visiting friends, family and his big sibs and it will be a rude awakening when the kids head back to school next week and the house is empty again. 🙂
There wasn’t a whole lot of sun to soak up in Morro Bay but we sure soaked up the fun!…
Olivia was a quick study and drove like a pro alongside her brothers…
We’ve also enjoyed a whole month free of any doctor appts but we’re making up for it this week as Rudy has an appointment with all his specialists except pulmonology!! As a result, we’ll have a thorough medical update later in the week. Funny little side note regarding pulmonology…we got insurance approval last week for Rudy’s second opinion with a well-regarded specialist at Children’s LA and just two days later we got official notification in the mail that she is actually joining the pulmonology department at UCLA in the wake of Dr. Pornchai’s departure!!! That’s how Rudy rolls–his referrals come to him! We’re excited to know she’ll be a part of Rudy’s team at UCLA and will also know if there would be any benefit to looking at another major facility here in LA. We’d like to get an appt in the books soon. Praying for discernment…we’ll keep you posted. In the meantime, we will make the most of the last few days of summer and anticipate a fall full of continued adventure.