Several readers have commented about how Rudy’s Beat has made them aware of the HLHS community and has led them to follow and pray for other families who are waging their own battles.  As we’ve felt the isolation that’s a part of such a struggle, we draw comfort by being connected to others at various stages in the journey.  Knowing what others are going through can be encouraging, helpful and, yes, at times heartbreaking–but it’s much better than going through this alone.

A few months ago I re-connected with Kathy, a high school acquaintance in NJ 20+ years ago, as her teenage son is a seasoned HLHS warrior.  She just forwarded the following and I thought some of you might want to be involved.

Kathy writes:

The son of a friend of mine is losing his battle with Congenital Heart Defects. He is 19 and has HLHS just like Garrett. He is trying to hold on through the holidays, but his lungs have irreversible damage and it is straining his heart. His mother has put out a request to give Johnny a “shout out.”

MaryAnn has blazed this trail ahead of us and has always been a tremendous source of strength and advice for me as we have gone through our challenges with Garrett. She has had her hands full with Johnny’s health concerns for a long time but whenever I was having a challenging moment she has ALWAYS taken the time to write me a note acknowledging in her humorous way that, yes, the whole situation sucks but that I am a great mom doing the best I can in a very difficult situation. It means a lot.

Here is the email she sent out. Please take a moment to read this note and see if it is something you would like to do. Also, please feel free to repost this note to anyone you think might be able to.

———————————–from MaryAnn —————————-

So we were basking up here on the sunny shores of Lake Erie (in our down-filled parkas)and realized it was time to send the hard message to our family and friends.

Johnny’s gotten excellent medical care in the year we’ve been in Ohio, but the condition of his damaged lungs is something that couldn’t be reversed. Now he is in end-stage pulmonary failure, and the strain on his heart is showing.

However, as is his custom, he continues to defy logic. He survived a bout of flu last week, which prompted a discussion with his nurses and hospice people. We think Johnny is holding on for as much of the holidays as he can, so we’re shifting to an accelerated Christmas plan here.

If you’d like to be part of our shout-out to Johnny, here’s the thing:

I’ve set up an e-mail address for Johnny — johnny.aquilino@yahoo.com — and am asking everyone and anyone to send him holiday greetings by e-mail.

What I’d really love is for everyone to make a hand-lettered sign with a message on it for Johnny, then get a photo of themselves holding the sign and e-mail it to him. I’ll print them out and hang them all in his room — and I’d love to cover the walls, if you catch my meaning.

Anyhow, I’ll keep you posted

Love

MaryAnn

I don’t think we’ve ever gone a full week without posting before.  It’s not like there haven’t been milestones and progress to write about.  Sleep deprivation would be the culprit.  Rudy has had a little battle with a virus.  Fortunately, there were no fevers or runny nose–just  a lot of junk in his lungs that bring on coughing fits.  The medical mystery we’d love some insight into is why the fits always get worse at night.  He’s pretty much in the same position on his back or side all of the time, and is able to sleep peacefully for long stretches during the day without coughing or need for any suction.  That all changes just about the time we start hitting a good REM cycle.  We’ve had our share of nights this week of getting up every 30 minutes to suction him clean.  In between, the sleep we do get is kind of like that one would get if you had to share a room with Darth Vader.  That little trach makes a distinct array of snorts and wheezes…none of which would be classified as “soothing”.

But no matter how fitful the night was, the morning always brings kicking feet and happy wiggles (Rudy’s way of telling us he’s ready to face the day).  So Trish and I take inventory of any new bruises we inflicted on each other by using our elbows to indicate whose turn it is to get up and tend to Rudy, and we stumble on to face the day.

Enough with the stupor.  On to the milestones.  Rudy celebrated his 13 month birthday on November 1st.  He also crossed the 20lb barrier by just a few ounces (time to change the car seat!).   Wilson came home with a stellar report card from his first quarter at Junior High.  Max and the mightly Chargers finished out their football season with a respectable showing in the playoffs.  Trish and I celebrated our 17th anniversary on November 7th.  I know many of you are wondering how I could ever surpass the way I spoiled my wife last year, but thanks to our good friends at Tiffany (watch for an upcoming post) I think I did OK.

We’ll be catching you up with some of the more unique happenings our life in the days ahead, but for now we’ll stick to a medical update.  We had an appointment with Dr. Harake and the word is…we’re still waiting.  We really thought that we’d be coming out of this with a date in hand for our return to UCLA, but that isn’t the case.  Treatment of HLHS kids is a series of judgment calls and we’re once again seeing that Rudy has his own unique approach and timeline.  Two of the key indicators of when it’s time to do the Glenn are 1) when his 02 sats drop (indicating that he’s outgrowing his shunt) and 2) when his right ventricle looks strained.  Rudy’s sats haven’t dropped (in fact they seem to be going up–a hopeful sign of improved lungs) and the ventricle looks fine on the echocardiogram.

Rudy’s uniqueness is evidenced in that the indicators that it’s time for the Glenn usually come at 4 to 6 months of age.  There are still a few conversations to be had, but the docs feel it best that the timing of the Glenn be determined by Rudy’s physiology and not according to generalized timelines.  Dr. Harake is quick to point out that this is a major operation which shouldn’t be rushed into–especially with a patient with a track record of very challenging recovery from heart operations.  On his last cath, the high pressure in the pulmonary artery increased the risk factor.  This is something that might change in time, but given that the two key indicators aren’t pushing the need for the Glenn, there’s even more grounds to wait.

There are a lot of areas where we might accept our kids’ uniqueness.  Lots of times we actually celebrate it.  Admittedly it’s a bit challenging to know how to respond to it in this case because it continues our uncertainty.  That part of us that longs to be able to know the future and schedule things craves to have some knowledge about when something so significant is going to take place.  It’s not like we want it to happen, but given that it does it’s hard to escape that looming feeling.

As I’ve never heard “convenient” among the descriptions for HLHS, I guess this is just par for the course.  We are so grateful for doctors who are deeply committed to Rudy and wrestle over the best course of treatment for him.  I’m glad no one is swayed by general timelines.  I’m most glad that all of this means more time with Rudy here at home with us.  Sometimes it takes a concerted effort to be reminded of this, but that really is the priority.