Today is a milestone day for Rudy. He turned nine months old! Nine months full like we never could have imagined. In looking back over the pictures since October, the way he’s developed is remarkable, but I’m also very aware of the traits that are taking shape inside him. In overcoming all that he has, Rudy has been a model of tenacity, perseverance, patience and contentment. I can look at him in one light and see a frail little baby; but then I look at the way his chest pumps up and down, stretching the various scars from all of the different procedures and I see toughness personified. He’s fought hard to get here and we are so proud of our little man.
Today is an important milestone of a different sort. Our friends in the recovery community will be pleased to know that today is his CLEAN date. An unavoidable byproduct of what he’s had to go through is that Rudy has not lived a day of his life without narcotics…until today. In most hospitalizations, patients are able to use narcotics for limited periods without any lasting impacts, but given that he was there for seven months, five surgeries and all of the other pokes, prods and procedures, there was no way for him not to get addicted. In his last few months at UCLA, the team switched him over to methadone (the slower acting, longer lasting narcotic they sometimes use to help people get off heroin). Even this had to be weaned very slowly as Rudy had some tough bouts of withdrawal the times we went too fast. He came home on .3ml every 8 hours (which is already very little, but too much to cut cold turkey) and we have been stepping him down about .02 ml every 5-7 days. We brought him down to .03ml last week (a fraction of a teardrop) and cut him off today. We stood ready with the Tylenol in case he looked like he was struggling, but he didn’t require any of it. We’ll have to watch him for the next few days, but in the meantime I’m now looking for an age-appropriate big book in case we need to start working the 12 steps. Anybody want to be his sponsor?
It’s great to have our little addict in recovery, but that doesn’t mean medications aren’t a big part of our life. He’s still on 11 different prescriptions (for all you pharmacy geeks or heart parents: Digoxin, Captopril, Spironolactone, Diuril, Lasix, Albuteral, Atrovent, Levothyroxine, Aspirin, Bactrim and a Multivitamin). We do meds at 6am, 2pm, 6pm and 10pm. The biggest batch comes at 6am just after the food pump alarm goes off to signal the end of his overnight feeding–more reliable than an alarm clock. The other morning I had the presence of mind to snap a picture of our little pharmaceutical operation. Rudy will always be on some medications for the rest of his life, but we don’t expect it to be this many and we celebrate each time we get to move another bottle over to the dormant section of his tray. I think there’s five there now, so we’ve made some progress. Go, Rudy, Go!
Rudy's Beat 
Great news! Happy nine months big guy! So proud of all you have done so far and we know you’ll do great things in the months and years ahead. We will keep praying for you as always. Hugs and kisses from our whole family to yours!
congrats rudy and family
I am so happy I check this blog every day for updates and am so thrilled to see him doing so well. What a wonderful wonderful family you all are Rudy is truly blessed. Liz
Good news!!!
So, now that he’s off the methadone, will Rudy be the youngest person to graduate from the S.B. Rescue Mission’s Drug and Alcohol Recovery Program…?
Off the narcotics is a HUGE deal! That’s great news. Yes, the list of meds is familiar but it WILL come down. Rudy looks fantastic and you all doing such a great job!
Kathy
Congratulations on another milestone and another month older. Way to go, Rudy! We missed Oma at our gathering this morning, but hear she is off tending to another batch of Geylings.
WOO HOO, RUDY!! Sounds like that ol’ roller coaster is going through a nice
l-o-o-o-o-n-g stretch of coasting rather than rolling. And we are all about that. Off the pain meds is such a gift….oh, so many blessings as you continue to enjoy this elysian summer.
We continue to be touched by each and every picture, and continue to pray for this little guy to someday, not have to endure so much in his life. He is the most brave little man, we have ever known, and trust God for all of his medical miracles.
Sort of funny, I never thought of the narcotic meds, but did see a dramatic upswing in happiness, expressed through his facial expressions, since he came home to his family. Who would have thought the weaning from drugs were responsible for so much joy and growth. Nah.. I blame the love and strength of the family.
We have waited a long time for this day. We are so proud of all of you who have stood by Rudy with fervent prayers, expertise, knowledge; and, to your sweet family, for your willingness to learn whatever is necessary to help Rudy grow and be nurtured and loved. You are all demonstrating the meaning of commitment. God bless and care for all of you.
Grandma Jo
Progress is a beautiful thing! Rudy you’re lookin’ so cute!!! As I looked at your black and white photo by my sink today I thought, “That’s not Rudy! It can’t be!” You’ve come a long way!
Grace
Looking awfully good! I was just telling Campbell the other day about all the meds he was on as an infant (and the awful day Cas & I *both* gave him his morning dig dose – we were out of town so the usual routine wasn’t in place). Have a great 4th of July celebrating all kinds of freedom!
One day at a time, Rudy! 🙂
As I was telling Rolf the other day, I don’t see how we ( even in our best years) could have carried the staggering load that y’all have been and still are dealing with. More power to you !! onward and upward !!!
Happy Birthday Rudy!!!
Again, I say Bless all of You……..HLHS affects all of the family, prayers for lots of good days, Nick’s Grandma
yeah Rudy! we’re so happy for you and kudos to your incredible home medical team of Drs. Mom and Dad.
we love you all!
Andi