A couple we know from our days working in the inner city lost their son fighting in Iraq in 2004. He was 21 years old. Our old friends are on my mind today. I have a son who wants to join the military…so much so that he is looking at schools with good ROTC programs. I admit part of me is hoping it’s a desire he’ll outgrow but I am very proud of his sense of duty and his patriotism. I’m grateful he has placed a value on “preserving freedom” and I wonder how that will play itself out in his life. I try hard not to take freedom for granted…how blessed I am that it’s all I’ve ever known! On this Memorial Day, I remember with deep gratitude the countless men and women who gave their lives to establish and defend MY freedom.
With Memorial Day comes the start of a new season! Spirits are high in our household as the end of school nears (only 8 more school days left!) and summer is in the air! Sadly, Wilson broke his arm last weekend playing an epic game of zombie tag which means he’s starting out the summer with no drums, no video games and no swimming but luckily he’ll only need his cast for 4 weeks so he has the second half of summer to look forward to. 🙂 Max (my lover of the culinary arts) has committed to cooking dinner for the family a couple of nights a week this summer. He’s excited to master a few more recipes and I’m excited he wants to do it!! We’ll see how that plays out for all individuals involved. Ha Ha Sweet Livy is excited to host swim parties, go to soccer camp, paint her nails (she’s becoming quite the nail polish artist) and craft. I’m praying for a summer that refreshes them all.
It looks like we may be at the start of a new season for Rudy too. We received a confirmation call from UCLA late last week to meet with a portion of the heart transplant team THIS Thursday, May 30th!! You may recall that our local cardiologist communicated a couple of appointments ago that he felt it was time to begin “transplant talks” with the team at UCLA for the purpose of gathering information and getting Rudy on the radar. It took a few weeks to get all the paperwork and insurance authorizations approved but we’re clear to proceed now and, actually, Rolf and I are a little surprised they’re getting us in so quick. Our initial consultation is with the head of the pediatric heart transplant program (Dr. Juan Alejos), the program nurse manager and pre pediatric heart transplant coordinator and a social worker. We need to arrive at 8am for an echocardiogram, we’ll meet with Dr. Alejos et al at 9am and then have some more tests and lab work to complete before we leave…it’ll be a full day. They’ll most likely want us to get a heart cath on the calendar as part of the standard procedure. Our understanding is that Rudy would not be considered a candidate (for the Glenn OR the transplant) at this point because of his pulmonary hypertension but Rudy’s pulmonologist seems to think a heart/lung transplant is something we could consider so we have much to discuss with the team…so many questions, so many thoughts swirling around.
The opportunity to pursue a heart transplant would be an absolute gift, a miracle really, and it’s worth starting the process to see where it leads but it’s also one of the most terrifying scenarios for me. The path we are on now is not perfect but it’s known…it’s familiar and we have learned to navigate it. The transplantation journey is unknown, it involves so many critical variables that need to align just right, it feels complicated and scary. I could burst into tears just thinking about it! Too much analysis at this point is premature but we’re committed to carefully engage in the process and we pray for God’s guidance and wisdom.
We have much to be thankful for and I can’t tell you how grateful I am to be consulting with people we know! This situation could be so different…meeting doctors and surgeons for the very first time at these initial consultations, needing to review Rudy’s complicated medical history with each new specialist, etc, etc. Instead, although we are starting a new process with a different department for an alternative treatment plan, the people are the same. The Pediatric Heart Transplant Team includes Dr. Reemtsen (Rudy’s surgeon), Drs. Alejos (program director) and Perens (Medical support) and Halnon (Medical support) and they all cared for Rudy during his first 7-months in the hospital. They are familiar faces to us and people we trust…that is of GREAT comfort.
We sure would appreciate your prayers…prayers specifically for our day at UCLA and for the days ahead that are so full of activities important to the big kids and our family:
Wednesday May 29: Max’s 8th grade performing arts class production of “FAME” (Max is excited because he plays a significant character)
Thursday May 30: Consultation with the Pediatric Heart Transplant Team at UCLA (Clear communication all around and calm hearts-for those of us with all 4 of our heart chambers!)
Friday May 31: Rudy’s last day of school (A party, piñata, fun! Don’t want to miss that!!)
Thursday June 6: Max’s 8th grade graduation, Last day of school for Wilson and Olivia!
Thank you dear friends! We are so grateful for today…we are hopeful for tomorrow! As always, taking it all one day at a time…
Max’s video is making the rounds on FB but it’s a must-see here on Rudy’s Beat! I’ve watched it many, many times and it still makes me laugh!