We sure appreciate all the prayers and good wishes, texts and phone calls yesterday. We felt loved and supported and are so grateful. Rudy’s heart cath went smoothly and we are pleased to report that there is some movement in a positive direction!
First, a little background:
Rudy’s heart surgery back on October 6, 2008 was the first of what was supposed to be a 3-step surgical process that would reconfigure the blood flow in and around Rudy’s heart to accommodate the absence of the two left chambers of his heart. In that first surgery, Rudy received a shunt (Sano shunt) that connected his single ventricle to his main pulmonary artery to provide pulmonary blood flow (blood flow between his 1/2 heart and his lungs). The Sano shunt was intended to be a temporary tool to sustain life long enough to get Rudy to the next step in the process known as the Glenn. The Glenn typically happens between 3-5 months of age but because Rudy encountered so many setbacks after his first surgery, his Glenn was delayed. For two years, Rudy was monitored closely with the expectation that the Glenn was just around the corner. However, during a heart cath in October of 2010 (October 21st to be exact), it was determined that Rudy was not a Glenn candidate (or likely a heart transplant candidate as well) due to high pulmonary pressures (a.k.a. Pulmonary Hypertension).
In the nearly 6 years since that devastating cath report, Rudy has had 5 additional heart catheterizations to monitor those pulmonary pressures and help reduce the pressure on his half heart wherever possible through angioplasties, stent implantations and the coiling of collaterals that were beginning to spring up. The goal was to keep blood flow moving as Rudy grew in size and mobility. Although we have seen some improvement in Rudy’s pulmonary pressures over the years, the cath report was always the same…not enough improvement to move forward. So, for 6 years, Rudy has been living in HLHS limbo…in a gradual process of heart failure with no options for treatment.
The reason for yesterday’s cath was to gather detailed information on the current state of his heart as there have been signs in recent weeks of factors in his heart worsening…i.e. high hemoglobin numbers detected in his monthly blood draws, an increase in tricuspid valve leakage detected in his bi-monthly echo exams and bluer lips/extremities in general. The goal was to see if there is an intervention that Rudy’s body can tolerate to relieve some of the stress being placed on his heart…ultimately buying him more time until a “longer term” solution can be reached. Possible options that Dr. Dan discussed with us a couple of weeks ago included replacing the Sano shunt (5mm tube at it’s widest, intended for an infant) with something bigger, a tricuspid valve repair (not optimal as it is a highly invasive open heart procedure) OR possibly a modified Glenn.
7-08-16 Cath Report:
As Rolf mentioned in his quick post yesterday, the results of yesterday’s cath are better than we’ve allowed ourselves to hope for in the last several years. Dr. Dan used the phrase “ridiculously good” a few times and we’re still trying to process what this really means for Rudy. In a nutshell, the pulmonary resistance has fallen low enough (so low, actually, that Dr. Dan retested them a few times to make sure he wasn’t getting a false reading!!!) that, in theory, Rudy’s body could tolerate a Glenn procedure (where the Sano shunt is removed, the Superior Vena Cava is severed from the heart and attached directly to the right pulmonary artery and blood flow from Rudy’s body drains directly into his lungs for oxygenation)!!
Now, granted, this isn’t the ultimate destination…the Glenn is just one hurdle in this long journey of treatment but it’s thrilling to think we might just be able to give Rudy a chance to clear it and move on to the next phase.
For all the cardiology geeks out there, here’s a look at the actual images in our post-cath consult with Dr. Dan…it’s kinda cool because it gives a visual of some of the issues I mentioned above. Unfortunately, Dr. Dan discovered that arterial access to Rudy’s heart through his groin isn’t possible…they’re all blocked so he gained access through his neck instead…not optimal but it got the job done. He was able to balloon the Sano shunt (controlled blood flow) again and started to coil some collaterals (rogue, uncontrolled blood flow) but, as you can hear in the video, stopped because access through the neck was too difficult.
So, what do we do now?
Dr. Dan arranged the schedule so that Rudy’s surgeon was on site during the cath as well…this was helpful because they were able to look at the images and discuss the results right away. We didn’t get a chance to talk to Dr. Brian ourselves but I think it’s fair to say that their initial feeling is the Glenn is back on the table. The plan is for them to present this new information at conference (hopefully soon) with Dr. Harake and the team at UCLA and then we will have a longer discussion with Drs. Brian and Harake about specifics. I suspect Dr. Harake will want to approach this conservatively and wait until the risk of not doing something outweighs the risks of the procedure itself (which we are on board with too) but I would also like to take some time to discuss the value of waiting vs. the value of moving forward while Rudy is strong in body and spirit. As I thought about it on the drive home last night and more today, it just feels like, from a non-medical standpoint, Rudy is ready emotionally to move forward. We’ll see. Like-mindedness and discernment are key in the discussions ahead…we ABSOLUTELY PRAISE GOD for sustaining Rudy this far and trust His presence will continue to lift us all in the months ahead.
Pictures? You bet!!…
Rudy was all smiles when we arrived at UCLA around 9am…he asked us the night before if he could wear his “Lightening McQueen shoes” (actually slippers) and bring his LMcQ backpack and had all his treasures packed before bedtime! Ha Ha He was very proud strolling around the hospital hallway outside registration after checking in.🙂
Rudy took his paperwork from the registration office and handed it in when he reported to pre-op…like a pro!!
Rudy going 70s retro with Mom’s makeshift headphone securer…Rolf wasn’t too sure about the look but I did get a couple of high fives for my ingenuity from nurses walking by!
Goofing around with Dr. Sanjay during the pre-cath exam!
The call to the cath lab…
We couldn’t go beyond the red line but Rudy didn’t care…he was so chill!
Rudy’s nurse in the PACU was from Ghana! When I told him Rudy has a Ghanian name – Kweku. George replied, “oh yes, baby boy born on a Wednesday”!! Exaaactly!!! LOVE IT! This was Rudy’s attempt at a smile at discharge…he was still quite loopy.🙂
Since Dr. Dan didn’t do any major interventions and because we got this drill down pat, there wasn’t a need to stay overnight for observation!!! Yay…we were free to head back to SB about 9pm. It made for a long day but we were happy to get back to Max and Olivia…and our own bed!
Rudy has instructions to lay low for a couple of days and he hasn’t been too motivated to do much today anyway…he’s a little sore and groggy still. So, we’re going to have a lazy weekend and rest up in anticipation of a fun week of Vacation Bible School (VBS) next week at our church.
You know Rudy’s wiped out when he falls asleep midday while chewing on a truck!
I can’t tell you how grateful we are that Rudy’s original cath date on September 6th was moved up. Rolf and I consider it God’s grace to be spared a long wait for a cath that is typically preceded by a few sleepless nights. We didn’t have time to get too anxious this week or brace ourselves for the “punch in the gut” report we’ve come to expect from Rudy’s caths. Thank you, again, for rallying around our boy with your prayers and acts of kindness and for continuing to journey with us in the setbacks and victories. God is doing some MIGHTY things, He’s worthy to be praised always and we’re glad you’re along for the ride!! :)