When Rudy last saw the Docs at UCLA in early June, the hope was to push the Glenn back to late September or early October putting us back in the hospital around Rudy’s 1st birthday. Well, after today’s appointment with Rudy’s SB cardiologist, it looks like we get to hold off and push it back even more which means we can party at home on October 1st!!! Yippy!!!
As much as I would love to have a general timeframe for the next heart surgery so I can begin planning for the family’s needs during Rudy’s next hospital stay, the fact that we get to wait another month to answer this question is a good thing for Rudy. Strong lung function is important to the success of the Glenn procedure where the superior vena cava is ligated (or cut) from the heart and connected directly to the pulmonary artery. The “blue” blood then goes directly to the lungs instead of through the heart. Given Rudy’s chronic lung disease issues, the more time his lungs have to grow and strengthen, the better! In layman’s terms, it is risky right now to do the Glenn procedure on Rudy but there will come a time in the not so distant future when the risk will lie in NOT doing the procedure. We’ll know this shift has occured when Rudy’s oxygen sats lower and remain low even when he is on oxygen. Our next scheduled appointment with Dr. Harake (SB Cardiologist) is October 9th…if things remain the same for Rudy, we’ll plan another 4-week appointment and so on until his condition changes and surgery is finally on the table (no pun intended).
The “not knowing when” is driving me crazy but it is clear that the best approach to managing all the intricate unknowns of the next few months is to not attempt to manage it at all and take it ONE DAY AT A TIME…why do I have to CONSTANTLY remind myself to do this? Correction…I’M driving me crazy!!!! 🙂
Most importantly, at 17 pounds and 27 inches, Rudy is doing well today and we pray for his lungs to heal and his body to continue to grow preparing a healthy foundation on which to take the next step in this HLHS journey. Thank you for your continued prayers as we all wait together!
Rudy's Beat 
Hi Rudy, My goodness. You ARE growing. I await the day when you can taste what you are eating and it tastes sooooooo good. Thankfully, your fortified formula is helping you gain, but it is a lot more fun to taste some goodies. So, our little one, we pray for continued strength and growth. We also look forward to the day when you can make the trip to Kansas to meet all the folks here who have expressed so much concern for you. We also have fireflys, sunflowers by the acres, beautiful eastern Kansas scenery, KU and the Jayhawks, cousins, cousins and more cousins.
So glad to hear that you’ll all be able to celebrate Rudy’s birthday at HOME! The unknowns are always so hard to handle, aren’t they? Thinking about all of you from Connecticut.
Yet another opportunity to let go, right? Seems like life keeps throwing us these golden opportunities to live our faith. Do we trust God to see that ultimately, ‘all shall be well?’ Or do we continually have to have our sticky fingers all over the people we love and worry about? Dear Trish, I ask these rhetorical questions of you because I MUST ASK THEM OF MYSELF. Learning to lean into the Holy Spirit is a lifelong occupation, isn’t it? You are in my prayers, o ye of the fighting mother’s heart!, as you lean this time. These lessons are so dang difficult! But you have discovered already, that by God’s grace, you are up for the challenge. Hang in there – and enjoy that party! We’ll set another date to get together so that you can pour yourself into that day with no holds barred. Love to you. (I’m sitting in the airport lounge as I read and write today – talk to you when we’re back!)
Get this for Rudy… http://www.yourbabycanread.com then he can tell the doctors his health issues… saving time and misdiagnoses… 🙂 also, if he plans on getting into ‘Soleil Kids Preschool’ he’ll need cred…
So glad Rudy-kins can have his first b-day at home!!! Taking one day at a time- old concept- nobody seems to get a handle on it- but we can pray to keep growing in that abandoned trust…
Continued love and prayers…the Van Fam
Great news! Rudy enjoy your time at home and have a fabulous 1st birthday! So thankful for such great news and we will keep praying for your lungs and strength and all that needs healing and all that needs improvement. Hugs, kisses and love from us.
17 lbs! WOW… go, Rudy, go!
Trish, One day at a time with Jesus is the best way to go… thanks for the reminder…. I know it in my head (or somewhere) but I’m constantly running ahead.
Praying for healed lungs for Rudy-boy’s October Birthday…..
Blessings to you all!
Jo Saraceno
Precious big boy, glad I dont have to rush with those new hospitalgowns !!
Prayers for the lungs to grow, and get stronger!!!
Happy Biorthday Party!! Wish we could be there.
Bussi O + O
What a lovely post! I can’t believe how time has flown and he’s such a big boy!
Praying for growth for Rudy in all departments!
See you soon!
Continue to check on Rudy and your family, you are always in our prayers. Our Nick has pulmonary artery problems to the left lung; so understand a little of what you are saying, so hard to take each day as it comes, prayers for strength, Nick’s Grandma
Keep growin’ Rudy! We’re all praying for you!
Let the party begin!!!! Praying for his lung strength and for all of you Geylings. Love you guys, K
That is great news! I can just hear the Rocky theme song in the background… “Getting stronger….” Go Rudy!
I’m going to trust that God has this “waiting” in His perfect plan. That when the time is right, He’ll let you know. In the meantime, that 1st Birthday Party will indeed be an emotional and very welcomed event. I will be in China on that day, but with all my heart, I will be praising God for this little man God blessed you with.
Go Rudy! I cannot believe you will be a year old (young!). As for one day at a time, yes, I have to remind myself of that too!!!! Heck, it’s more like one step at a time. My prayers are always with you. Party on little Rudy and to all the Geylings!!
Love always,
Tanya
Wow – big news! Exciting he’s doing well and has some more time to heal up and pack on the ounces. Blessings to all of you.