We worked hard to keep Rudy quarantined and bug-free before the cath but it seems we couldn’t escape the hospital without bringing home MRSA! The culture taken from Rudy’s foot wound tested positive for the nasty infection and Rudy is on the prescribed anti-biotic now. He’s no worse for the wear and is a happy little infected one but he’ll need to stay close to home for another week due to the contact precautions. I’m still waiting to hear back from his therapy clinic and school but I don’t think he’ll be allowed to go back until he has finished his 10 day course of antibiotic. Poor guy…he’s already a little cabin-feverish. As for the rest of us, well, we’re washing our hands a lot and avoiding kissing Rudy on the mouth AND the big kids are keeping far away from any diaper changing that goes on since being grossed out by the home health nurse who told them it’s easily transmitted through urine and fecal matter!!! Nice!!
So, as our spring break draws to a close we’re focused on the added logistics of Rudy’s MRSA treatment. The big kids seem pretty content with their spring break (and I’m grateful for that) but I’m wishin’ we had had the opportunity to do something special and out of the ordinary. I guess Mama is a little cabin-feverish too. 🙂
Thanks for all the funny and helpful comments about Rudy’s foot…we watched Toe-cephus carefully all weekend and got Rudy in to see the pediatrician yesterday. As we suspected, it appeared to Dr. Abbott Sr. to be a pressure wound from the IV wrap. He didn’t suspect it was infected but took a culture sample just to make sure. It looks ugly but it’s on the mend.
We saw Dr. Harake today for a follow-up to the cath. He did an echo and we discussed Dr. Dan’s notes from the cath lab. Dr. Harake explained again that there are several variables that all need to show improvement before Rudy would be considered for the Glenn…variables that include pulmonary pressures, ventricle function, lung ventilation, etc. Although all the variables are not yet aligned, we are slowly seeing improvement in most of them so our patience is paying off. One thing that is for sure in the meantime is the need to coil as many of the remaining collateral veins as is possible. We’ll give Rudy time to recuperate from this procedure but Dr. Harake feels we should get the next cath on the calendar within the next several months for a marathon collateral coiling. He also feels that now that the Sano Shunt is opened up, there isn’t the need to stent the aorta at this time. There is greater risk in stenting the aorta than not at this point so we’ll wait.
So, with it being spring break here, we’ll rest up and lay low the rest of this week. Oma and Opa left yesterday and the big kids are off in all different directions having fun so Rudy is a little lonely. Luckily Grandma Jo is next on the list to visit us next week so he’ll soon have the undivided attention of a grandparent again. Ha Ha
Thank you for your prayers and well wishes. We’re still feeling scattered but grateful. Happy Spring Everybody!!!
Rudy’s been taking it easy at home since getting back from UCLA late Thursday. He’s a little achy from time to time, but a little Tylenol seems to take care of that. We’ve been very touched by Docs Dan and Nina calling personally to follow up the cath report and check on him–so assuring to have such gifted doctors who care deeply for Rudy and our family.
The most interesting development since yesterday has been the massive blister that seems to be taking over Rudy’s foot. We texted a picture of it to some nurses and one of the docs who sent back “Wow! Never seen anything like that before.”. This has given us room to create our own theories: infection (not likely as the foot isn’t painful, warm or red), allergic reaction to tape (but there was tape all over him so why only there?), or a burn from something to do with the IV (my best guess as the port was right there and something could have leaked under the dressing).
More rampant and creative theories from his siblings include: an alien nesting under his skin that’s going to emerge? A collateral sixth toe (since the veins were coiled up something had to grow somewhere)? An inchworm that’s spun a cocoon on the side of his foot?
In any case, Rudy is not noticeably disturbed by it, so we’re watching it and taking pics so we can track its progress. The big kids haven’t named it yet, but it’s big enough that they do address it as a separate entity from Rudy (as in, “Good night, Rudy! Good night, Rudy’s blister!” or “Is Rudy coming? Is the blister coming too?”)
We’re not really into putting gross-out pictures on our blog, but in the name of science, here is the wondrous blister (just in case you can’t see it from your house). Feel free to submit your own theories or potential names.
Ahhhhhhh, we are headed home after a restless night’s sleep and we’re all pretty grateful we’ll be sleeping in our own beds tonight! Rudy’s discharge went pretty smoothly this morning and after an echo, a check-in with one of the cardiology fellows and a visit from Dr. Rick, we were on our way by 1pm.
As Rolf mentioned briefly yesterday, the cath results are favorable. Rudy’s lung function is, indeed, improving. He’s still not a Glenn candidate but, like last time, he is heading in the right direction! One report that surprises us in particular is that the O2 sats coming out of his right lung are measuring in the 90s! To put things in context…when Rudy was diagnosed with his chronic lung disease and put on a continuous supply of oxygen in June of 09, his O2 sats coming out of both lungs were in the low 70s (meaning that the blood coming out of the lungs was only 70% oxygenated when it should have been 100%). Over the past two years, we have seen gradual improvement in the left side to where it reached the upper 90s last fall but the right lung was still measuring in the 70s…this made sense because the right lung saw the most damage during Rudy’s battle with the chylous fluid in his chest cavity after the Norwood surgery in 2008. Well, being patient has paid off as it looks like the O2 sats coming out of both lungs are near normal. This is thrilling news and an indication that the lungs are slowly healing. Dr. Dan even questioned why we still have him on oxygen!! In follow-up conversations, no one is willing to dc the supplemental oxygen at this point but it’s definitely something to keep an eye on!
Rudy’s pulmonary pressures are still too high for surgery but better than the numbers last fall so, again, there is reason to celebrate.
Rudy’s heart function is stable…it is enlarged as Dr. Harake mentioned in our last office visit but Dr. Dan didn’t make mention of it being a problem at this point. Our biggest battle right now is to keep the blood flowing while we wait. The 5mm Sano shunt that Rudy’s surgeon, Dr. Brian, put in during the Norwood procedure has gradually gotten smaller over time as tissue encapsulates it. Even if it wasn’t getting smaller, the team would usually expect kids to outgrow these shunts–there are some who marvel at how Rudy hadn’t already grown out of it since so much time has passed since the Norwood. Yesterday’s cath showed that it was down to 1mm–very small by any standard (we found it hard to believe them when they told us not to worry that it was all of 2.6mm a year ago.) Drs. Dan and Harake first attempted ballooning the shunt to expand it but that didn’t work so they ended up implanting two stents and got it open to 4.5mm. This will keep the blood flowing between the heart and lungs and buy us some more time. Ironically, they did not balloon or stent the aorta as originally planned. We were under the impression that stenting the shunt was a more pressing matter to address. I’ll have to ask Dr. Harake more about that at our follow up echo next week.
Lastly, Rudy’s body is continuing to forge it’s own answer to the lack of passageways for the blood to flow by producing new collateral veins. I’m still amazed at the human body’s ability to create these webs of alternative routes but the collateral veins create problems. In order to have a successful Glenn down the road, the Drs. need to be able to control where the blood flows and these collaterals that are trying to serve a purpose end up becoming an inefficient way for the blood to circulate and weaken the whole system the docs are trying to construct. As a result, Drs. Dan and Harake coiled a bunch of them yesterday (literally with coiled wire) and even used a special $4000 glue for one particularly large collateral. Unfortunately, there are many, many more that will have to be coiled down the road but they got the big ones for now.
As always, we are blown away by and so grateful for the great care Rudy is getting and walk away from this procedure grateful to God for His work in the healing that is happening. We continue to walk one baby step at a time! Thank you for the many prayers offered up for our boy and family. We are so relieved to have this one behind us and by the look on Rudy’s face as we drive into our cul-de-sac, I think Rudy’s relieved too! 🙂 Blessings dear friends.
Got to a room fairly quickly (only 2 hrs in PACU). Slept so-so. Rudy’s not in huge pain, but uncomfortable and woke up often. Different tactics distract him for varies lengths of time. iPad is worth every penny…
Having an echo right now. After that we’re likely clear for discharge, but probably still a couple docs to round on him.
Got back with Rudy after 7 hours here in PACU. Heard from two tired but excited docs about all they did (43 angiograms for you heart nerds) More detail later but two stents to open the Sano shunt (which had narrowed to 1mm) to 4-5mm. Then a huge collateral coiling fest. Lungs look strong both in terms of oxygenation and pressures. Not a Glenn candidate yet but good progress.
The warrior is slowly waking up. Not smiling yet, but not super-cranky. Due to all the work they did, they want him supine until 9pm.
When this thing beeps, there’s either an update from the cath lab or our table at Chili’s is ready. Been watching it in the dining room for 3 1/2 hrs. Decided to come outside and watch it on the patio for awhile.
It’s buzzed twice. First at 11:30 to tell us things were underway a bit late and just now at 1:30 to tell us they’ve got another hour to go. Rudy’s beat his personal best for cath lab endurance. They placed two stents and are now coiling collaterals. Rudy is stable.
The trip from SB to UCLA went smoothly. Rudy still has celebrity VIP status–didn’t make it 20ft from the car before the first of several adoring nurse fan spotted us. Good to be in skilled and caring hands.
Got the call from UCLA late this afternoon that we’re the first case in the lab tomorrow morning. Procedure time 8:30; admit time 6:30 means we leave home at 4:30. Rudy seems like he knows something’s up as he was really cranky this evening and has just finally just starting to doze off here at 10 pm. About the only thing that settled him down was demonstrating the iPad to Opa.