Dr. Harake handed us a prescription at our appointment last Friday for two new meds and wrote on the bottom of it in big, block letters “PULMONARY HYPERTENSION!”. Never before has he written SO CLEARLY the diagnosis for which a drug is being prescribed but apparently this time there is need for clarification as one of Rudy’s new meds is Viagra. Yep, you heard me right and many of you heart moms out there can relate to the awkward interaction one can have with the pharmacist when trying to fill an order of Viagra for a baby. Here’s a little trivia for you…the drug was originally developed for it’s vessel dialating function and when some lucky guinea pig discovered it’s positive side effect, it quickly began being marketed for, well, you know…. Poor Viagra is a bit type-cast because it actually serves a very important medical purpose in many heart and lung patients. So, it’s off to the pharmacy we go with two new meds on our list bringing our grand total back up to 13 daily meds. Bummer! I guess Rudy’s list of meds will always be somewhat fluid but adding meds always feels a bit like taking steps backward instead of forward.
After talking with Dr. Harake (SB) at our appointment and then with Dr. Dan (UCLA) over the weekend, the plan for now is to wait a couple of months for these new meds to address some blood flow resistance issues in the lungs. The high pulmonary resistance makes the Glenn a very risky operation for Rudy as not enough blood would make it through his lungs to sustain him. This is actually a seperate issue from Rudy’s low oxygenation (which is due to damage or disease the lungs are trying to recover from); but the physiology of it all would suggest that if the blood flow is allowed to freely flow then the oxygen sats could be influenced. I don’t quite understand it all yet but the main point is we are going to wait…and the fact that we can wait is a blessing we don’t want to overlook. The timing of the Glenn in HLHS patients is often determined by heart failure and doctors are forced to do the surgery despite any critical concerns about the lungs. As most Glenns typically happen around 4 to 6 months, we are amazed that Rudy’s trusty single ventricle keeps beating without any signs of failure even after 16 months. Since we’ve been going month-to-month since June, even knowing we have a 2 month timeline is more definition than we’ve ever been given so we’ll work with it.
Speaking of working, Rudy continues to try hard in his therapy sessions and we’re working with objects that are a bit heavier to increase his strength. Wooden spoons are the “barbell” of choice these days:
Thank you for standing alongside us in this and for standing by as we wait this thing out…we will most certainly keep you posted!
Rudy's Beat 
Well, the viagra has helped Garrett’s messed up pressures a lot. We prefer to call it Revatio here because Garrett is going on 13 and knows what Viagra is. The good news for you all is that for the other “side effect” to occur, we have been told that there also needs to be the desire or thoughts. Not going to happen with Rudy but with my 13 year old boy…well…I guess we will know when puberty really hits.
All that aside, it has been very helpful in helping Garrett and I pray it will help Rudy’s pulmonary resistance too.
Kathy
Looks like a drummer in training. Hugs and kisses to Rudy and all. Still praying as always.
Whatever works! Go Rudy. You play the spoons very well. Look out, Wilson, Rudy may take over your drum set! Love you all……..Grandma Jo
Trish, I have to admit that I just cried when I read this. I am struck by your bravery in the face of such a long, LONG season of waiting and caregiving. Your lovely boy is delightful to watch – got the family sense of rhythm, too! – but my, this is so hard. This, too, you will handle with aplomb, by God’s grace and your own wonderful disposition. But where, dear girl, in your life is there space for you to breathe? Time for a spa day or half day? Or a long sit by the beach by yourself? Or a drive to the top of 154 to enjoy the valley view? Somewhere in the midst of all that you must do (and I do know that you must do it), there needs to be a small space for YOU. Space to recharge, space to scream, if you need it, space to weep the tears that you hold inside for the sake of your family and others. We are offering a half-day, guided solitude retreat at MCC on Ash Wednesday from 9-1. The facilitator is a friend and is quite gifted. It might be just the thing, if the morning could be cleared. Open a window of grace and renewal wherever you can, dear girl, and climb out into the open for a spell…
We are proud of you sweet boy!
Rudy will have some ripped biceps before we know it! Praying for his strength and for you all during this time of waiting.
p.s.- Rolf, it’s just plain wrong to use your son as an excuse to get a prescriptions for yourself. Viagra for Rudy……..yeah right. 🙂
What a great use for those spoons–muscles, rhythm, the beat! Praying for all of you and missing Oma greatly–many days I will be lonely at Mass!
go Rudy, do believe he knew he was making music, but I worried a little when he was down to one spoon about his little hand and nose(that is the grandma in me) prayers for all, Nick’s Grandma
Stud muffin Rudy!!
Hey, I just wanted to let you know that I was at a birthday party yesterday and was introduced to an expecting couple who (I think just this week) had an ultrasound and learned their baby is only developing half a heart. I immediately mentioned you all and was wondering if you would be up to communicating with them? If so, how could I best connect them with you? Thanks for considering this…..
Happy Valentine’s Day to you all!!!!
Hey Trish! Rudy is quite the spoon’s player! God has placed you all on my heart quite a bit these days! Praying for you as you wait. Love you my friend.
I love the song Lean on Me – your kids are so darling. They love their brother and this experience will always be with them all their lives. What sweethearts you two have raised!