Home Safe & Sound

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.