Today was a low key day getting Rudy settled again and trying to put what we learned yesterday into perspective. Rudy is bouncing back quickly…he woke up uncomfortable and fussy but perked up after a dose of Tylenol. Rolf and I have been walking around in a bit of a fog not getting a whole lot accomplished but I’m thankful we had today to decompress.
So, now we sift through all our questions and try to figure out what it all means. As Rolf reported yesterday, Rudy’s lungs have not shown any improvement and because of the high pressures and his chronic pulmonary disease, he is not a candidate for the Glenn. His lungs would not be able to support the recirculation of the Glenn and he would, most likely, not survive. Needless to say, we are deeply disappointed. As it stands now, the Glenn is off the table. Unfortunately, Rudy would not be considered for a heart transplant either for the same reason. He would need healthier lungs to support the acceptance of a new heart. We didn’t inquire about a complete heart and lung transplant…it’s too early in the process to consider that, I think.
Both Dr. Harake (SB cardiologist) and Dr. Dan (UCLA cardiologist) agreed that the good news is Rudy is content, happy and growing in his present state. The shunt put in his heart during the Norwood procedure at birth has narrowed a bit (started out at 5mm and is now at 2.6mm) but is in good condition, allowing the necessary blood flow and his right ventricle is strong so he is in a “safe” place while we wait. Dr. Dan also pointed out (and we agree) that eventhough the results are not at all what we hoped for, they are definitive results making it very clear we are not to proceed with the Glenn. If there had been a slight improvement in the oxygen levels or a decrease in resistance, we would have found ourselves in a gray area with the temptation to move ahead potentially putting Rudy at great risk. Now, it’s very clear we wait. What we’re waiting for, however, is not so clear.
Drs. Dan and Harake didn’t want to comment too much on what options we may have until they conference with the rest of the cardiology team (which will happen early next week) as well as Dr. Shapiro (ENT) and Dr. Pornchai Tirakitsoontorn (Pulmonologist). It just so happens, we have a scheduled appt with Dr. Pornchai on Tuesday morning at UCLA and a follow up appt with Dr. Harake here in town next Friday so we should have more information by the end of next week. The bulk of our questions are for Dr. Pornchai at this point…we need to find out if there is ANYTHING we can do to help improve the health of Rudy’s lungs. Dr. Harake wants us to continue the two Pulmonary Hypertension drugs Rudy has been on the past 6 months. We hope Dr. Pornchai will know of any other medications or therapies that might address the ventilation and circulation issues in Rudy’s lungs. Dr. Pornchai has always been optimistic that the lungs would regenerate as they often do in the first 2 years of life. Since Rudy is now two, we wonder if there is still hope of regeneration or if we have maxed out on that window of opportunity and his lungs are as good as they are going to get.
Drs. Dan and Harake were able to reassure us, though, that we’re not dealing with a ticking time bomb. When Rudy begins to outgrow the Sano Shunt, it will be a gradual thing that Dr. Harake will be able to monitor during our monthly echo appointments. As far as we understand at this point, if Rudy were to outgrow the shunt and his lungs were still not ready for the Glenn, they could put in a bigger shunt. People have survived years with shunt replacements. Of course, this is not the best case scenario for us but it is comforting to know we’re not on the lookout for sudden heart failure!
There is still alot of discussion that needs to happen among the doctors involved and we’ll take our time to wade through all the information but, for now, we feel we need to make a big mental shift and proceed as if the Glenn is not an option in the near future. This is significant because there is quite a bit in Rudy’s care that we have shelved until “after the Glenn”. We feel (and Dr. Dan agrees) that our next step is to go to all of Rudy’s specialists and let them know that the Glenn is not an option and inquire as to how they would proceed in caring for Rudy in their area of expertise. Things like….revisit the plan to decannulate with Dr. Shapiro, talk to Dr. Kelts about Rudy’s food aversion and getting him to a food clinic of some kind, maybe changing the approach to his physical therapy, etc. Our primary concern has always been Rudy’s quality of life and that hasn’t changed but “quality of life” now has a broader definition. We don’t believe that Rudy’s condition is as good as it will ever be but we also feel like we are at a point where we need to provide an opportunity for Rudy is develop as much as he is able to in his current condition and not wait for his condition to improve as we have been for fear of putting too much stress on his heart, etc. We’re still not sure what that means for us exactly and we’re still trying to process our feelings about it all but we have hope, a deep trust in the power of God and love for each other so we walk in faith that these things will indeed remain throughout this journey – wherever it takes us.
Rolf and I are also very grateful for the care and concern we felt from Dr. Dan and Dr. Harake in all of this. Dr. Harake said at Rudy’s monthly appointment on Monday that he was so proud of Rudy and yesterday he sat with us for a long time as we absorbed this information and reiterated how exceptional Rudy is…very tender in his communication to us. We were touched this morning by a follow-up call from Dr. Dan to not only check on how Rudy was doing physically after his day in the cath lab but also to find out how Rolf and I were doing…so patient to address and affirm our concerns. One thing is for sure, we couldn’t be in better hands and we are grateful Rudy has a team both here in Santa Barbara and in Los Angeles that care deeply for him. We are blessed by them and you! Thank you for all the amazing comments, emails and Facebook messages…for your prayers and for feeling the hurts as well as the joys with us. We are overwhelmed with mixed-emotions but we are ever-grateful.
Happy at home