Full Metal Jacket

Thanks for praying us through a loaded day yesterday. Given the haste with which this cath was scheduled–and some of the past experiences we’ve had of cath results being a kick to the gut–we were a bit apprehensive leading into things and probably even steeling ourselves for some tough news.

Our anxiety was heightened by the discussions during pre-op. The primary goal was to see if there were any things that could be done to lessen the strain on Rudy’s enlarged heart. Signs pointed to the coarctation in his aorta (fancy doctor-speak for a tight bend which restricted flow–like a stubborn kink in a gardenhose). The team has previously tried to correct this by inflating with a ballon, but the bend acted like a crease and it popped back. The way to fix it would be to insert a metal stent, which is common in adult patients, but Dr. Dan couldn’t think of a patient as young as Rudy in which he had ever done it. The main problem is “getting the equipment to the jobsite”. The large stent and catheter they would need to do the job would need to be threaded up the femoral artery from his leg and there was concern it just wouldn’t fit. Additionally (and admittedly a bit disheartening) is the fact that the left femoral artery is Rudy’s last un-occluded path to his heart.  Even the most skillful intervention creates scarring and an artery can only be used a limited number of times before it becomes impassable, leaving more complicated surgical cut-ins as the only option. So the team needed to weigh whether any intervention was worth that cost, but they wouldn’t really know for sure until they got in and assessed things.

Needless to say our heads were spinning more than usual as we headed downstairs–but at least it took away our appetites and kept us from stress eating our way through the waiting. Good company and a lot of drop-bys from docs and nurses helped to pass the time. We got a progress call from the lab nurse around 3 hours in that they had stented the Sano shunt (which had narrowed significantly) and were finishing up–no action on the aorta. Not bad news, but we kind of prepared ourselves for a “there was really nothing much we could do” conference.

Just a few minutes later we got paged again and Dr. Dan was on the phone rattling through the positives: heart function looks better than everyone feared (perhaps the reason we suspect they rushed us in), they were able to open up the Sano to its original size, and now they had just finished a consult with Rudy’s surgeon and did feel that they should attempt to stent the aorta.

The significance of the moment only hits me in hindsight, but almost unnoticeably things shifted into the quiet intensity that one can suddenly find themselves in in the cardiac world. Just as Dan told me that Brian Reemtsen (surgeon) was coming coming out to speak to us, Brian stepped around the corner. We had a brief three-way exchange with Dan in my ear and Brian in front of me to make sure I understood what was happening and that they were in agreement. Dan finished with, “we will stop at any point if we feel it isn’t safe, but do we have your permission to proceed?” Of course, I agreed but it was only later that it struck me that this was not a routine procedure.  Even with the global consents we had signed in pre-op, there was something about what they were attempting that they felt like they needed specific consent for.

Dr. Brian spent time with Trish and I expressing encouragement over Rudy’s condition and that, given the strength of the heart muscle, it was very worthwhile to attempt a step like this to reduce the strain.  While any future surgical course is still unclear, successfully addressing the coarctation would have to happen first. Brian certainly wasn’t promising anything specific, but there was a note of wonder that we might be talking about that someday.

We had a bit more to wait before Dr. Dan showed up to give his report and walk through the imagery. He was very upbeat and told us right away that the aortic stent could not have turned out better. The arc had narrowed to 9mm and they were able to insert and expand a stent to 16mm–the size of an adult aorta–which means there is no pressure gradient across it and the blood flows freely!

As the nurse told us over the phone they were also able to fully rehab the Sano shunt to its original 5mm diameter. It had shrunk down to 2.2mm at it’s smallest point, but they used multiple stents and balloons to get it back to its original diameter. As this is supposed to be the primary means Rudy’s heart has to oxygenate his blood, it’s very good to have it free and clear (and gives us chills to think how tiny it had become). Dr. Brian also commented on how amazing that little shunt has performed–he hasn’t seen one last so long and serve a patient as well as Rudy’s has. That could raise concern that we are well past borrowed time, but Dan said he’s now given the Sano and the aorta “full metal jackets” by lining them with stents which will keep them stable, open and clear for a long time.

Dr. Dan was very pleased, but also wanted to get back to Rudy as he was very concerned about the femoral artery. He said they would watch that very carefully overnight as a bleed there would be a major issue.  As you can already tell, the time in recovery went really smoothly and Rudy was peaceful and content to lie still like he was supposed to for the rest of the day and slept through the night.   Among the more significant developments was that his 02 sats were consistently in the high 80s (compared to the low to mid 70s where they’ve been of late.  Since this was his first post-trache cath, it was also the first time he was intubated, so he had a scratchy throat and barely spoke above a whisper–until the moment he saw his big sibs at home had him squealing with his trademark joy.

We’ve learned to navigate this journey and all its big uncertainties by looking for reasons to celebrate and embracing them.  That’s what this day meant for us.  The big questions didn’t get answered and the major issues didn’t get resolved–but who knows if and when they ever will.  For now, we’ll celebrate Rudy’s armor-plated arteries and the positive step they are.

 

Family FaceTime makes hospital stays more fun--but nothing's better than being together in person again!
Family FaceTime makes hospital stays more fun–but nothing’s better than being together in person again!

13 thoughts on “Full Metal Jacket

  1. This is all really big news! It really sounds like they out him in a much better position cardiac wise and took a load off that heart. That is AMAZING! I am so happy that this cath went well.

    Kathy

  2. Rolf, thank you for taking us through your ordeal yesterday. You guys are so strong, so faithful, so thankful. Inspirational.

    Rudy is a true warrior. That little guy has the best attitude. He is a big inspiration, too!

    The staff at UCLA is so incredibly talented. I give thanks for them often. The fact that the load on his heart has been so successfully reduced is an answer to prayer. I am so grateful for this news!

    You guys all have the ability to give this to God, and I believe your faith and love and commitment is rewarded.

    Please know that we are all involved in this journey with you. We all love you guys, laugh and cry with you, pray like crazy and celebrate the joyful positives along the way. You are all, truly, in the loving hands of our Lord.

    Big love and many prayers,

    Prayer Warrior

  3. Wow!!! This is intense!!!! Mom and Dad also had on their metal jackets…..Glad for the grace to walk through that….and shiver afterwards!!! God is good! Wow….

  4. Wow, what a couple of days! So thankful for smart and talented doctors at UCLA and for graceful, grateful, and faith-filled parents like you guys. Happy Rudy is already seeing improvement.

  5. Oh my! Have been praying and thinking of you guys often these last few days. Praising God for how this all went and the hope of future improvement. You all love so well and are a real encouragement to many surrounding you! Love to you,
    xoxoxo

  6. This made me cry! Thanks so much for the intensity of this report – you have conveyed the high emotion of it all so very well. May Rudy continue to rest and heal from this latest assault on his lovely, small body. And may you and Trish find rest, as well. This is a good, good stopover place for you, I think. Higher O2 stats are GREAT news and now, he’s staged for further healing and strengthening. Lovely, lovely.

  7. we love you Rudy so very much and are cheering for you and your whole family from across the Atlantic here in Europe. love Aunt Andi et al

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s