Our week of spring break is quickly coming to a close…it has gone by way too fast but it has been fun. Our string of family birthday celebrations continued today with Wilson’s party. His 12th birthday is next week and we had fun exploring the nearby caves of Lizard’s Mouth and playing games here at home with three of his friends from school. As chaotic as life is, we were able to pull off some of our usual creativity in celebrating our kids–me with cool survival treat bags and Rolf in his ability to throw together 2 totally-cool outdoor boy adventure activities less than one hour before the guests arrived. Boy is it fun to celebrate our kids together!
- Celebrating Wilson!
In addition to preparing for Wilson’s party, Rolf and I continued to make preparations here at home for Rudy’s homecoming. It’s still unclear what kind of timeline we’re talking about as we have heard different views from various individuals but I think it boils down to the feelings of the next PICU attending physician who will start on Monday. Rolf will head down early tomorrow (Sat.) morning and, hopefully, get a better idea of where we stand. It may be necessary for us both to be at UCLA a couple of days this week to “prove” we are capable of taking care of Rudy before they’ll okay him for discharge. It is really tempting to get a little uptight about the details of this discharge so we’re praying for grace and trust in God’s timing of it all…it would just make things so much easier for our family if we could have a specific plan in place.
Rudy is certainly doing his part as he continues to feed! Today he took an entire feed orally…100ccs in about 50 minutes. The goal is for him to be able to consume 100ccs in 30 minutes but the fact he was able to take the 100ccs from a bottle this morning (regardless of how long it took) is very encouraging. They have already run out of my milk so when I’m not there, Rudy gets formula. Rolf will take a stash of the frozen milk we have here at home tomorrow so Rudy will be supplied again until I get there on Monday. Many of you have asked how long Rudy will need the feeding tube and we’re just not sure at this point. Because he is able to feed orally, it seems pretty clear that the g-tube will be a temporary need. It would be premature, however, to remove it at this point because although Rudy is taking a bottle, he isn’t consistent and we need to make sure he is getting a full 24+ ounces a day. He still isn’t very interested in nursing but I’ve decided not to push it. There are too many distractions at the hospital and I’m just not relaxed there…I’ll try again when we get Rudy home and we can sit (where it is quiet and comfortable) and take our time. My milk production, however, is starting to wane so I’m praying for renewed vigor in that department…there is just so much going on mentally and physically I’m having a hard time keeping up.
Rudy is also doing great off the vent…as far as we know there aren’t any concerns there. He hasn’t had a chest xray in a while but he sounds clear after his trach is suctioned and he has developed a nice, strong cough which means he is able to clear his lungs himself…another sign he is getting stronger. His trach is also a temporary aid. I’m not sure when they’ll wean him off the trach but because it is another potential source of infection, Dr. Brian would prefer that wean happen sooner rather than later…maybe even before his next open heart surgery. We’ll see…
I guess that’s all to report tonight. Rolf will be able to share more specifics tomorrow once he’s at Rudy’s bedside! We promised ourselves at the start of the new year that we weren’t going to place our hopes on getting Rudy home from one holiday to the next but it sure would be wonderful if we could celebrate Easter with Rudy at home in Santa Barbara!!!!! Ahhhh, may it be so…thank you all for your continued prayers!!!
Rudy's Beat 
Sounds like a great birthday bash, wish I was there climbing with you.
A big hug and prayers for more progress for Rudy.
He wants a 6 months birthday bash too!!! Goody bags and outdoorgames!!!!
great to see the outdoors and your family enjoying it………understanding all your emotions and concerns about the Big Day…….if we only new the plan, no one knows……hang in there, prayers for good days to follow, Dawn’s Mom
I hope Rudy comes home soon, also!
Happy early Birthday Wilson! We sure have fun seeing you whenever we do…Lizard’s Mouth looks fun! We are glad you had a good spring break and we hope the whole family has a very Happy Easter! Love, The Kenyons
Happy Birthday Wilson. Cameron just turned 12 last month. I forgot you were that close in age. Great news on all fronts we will contiue to pray for all of your needs. Have a great weekend.
Hugs and kisses.
Please tell Wilson Happy Birthday from us. I can’t believe he is 12 year old. How time flies. Sure glad to see Rudy doing so well. Prayng he will be home soon and all goes well. Take Care & Ggod Bless
Resurrection Sunday would indeed be a great day for Rudy to take a elevator ride. God’s perfect timing…..always hard to let go and let God. Speaking personally, it has always been the hardest for me to do in my walk with the Lord. When you are the organizer and planner, it’s so hard to give it to the Lord. He says, “Rest and know I am God.” So, I sit down, take a deep breath and lay it at His feet. Be still and His perfect timing, His perfect plan comes….I believe. Love, Cousin Dianna
YYYAAAHHOOOO!!!!! Coming home soon thats awesome. Im so hear for what ever you need. I think maybe ill bring over pizza and a movie once you get home that way we can distract the kids and you guys can have a little break. Trish dont forget about Fenugreek. Its a natural supplement to stimulate lactation. You can get it at Whole Food right there in Westwood. Im praying that there is a smooth transition from the hospital to home. xoxo!! Go Rudy Go!!!
Rudy is making that slow and steady progress, like we all hoped for him! It’s so hard to believe he’s six months old already…and very exciting that his homecoming may be comign so soon!
Continued prayers for forward steps to home!
We caused a stir at church this morning when we were able to tell others that it looks as if Rudy will be going home Tuesday! Pastor Steve made the announcement at the second worship service and we received many kind responses after the service. We are so proud of your family. The kids did their homework every day and kept their grades up on their own. That shows how well they handled the stress of many changes in their routine. Then you, Trish and Rolf, have been exceptional in your caring for all of them plus Rudy. No wonder God chose your home in which to place Rudy. With all of the great examples he has to follow, he is a winner as well as a fighter. God bless all of you–always.
Geylings,
It sounds like we’re close to the big day! Eat up, big guy and get ready for the ride to SB! You’ll be climbing the boulders in no time!
Love,
Joe
What great news that Rudy may be coming home very soon. This has been such a difficult journey, but one God has had His amazing hands on all along. We will continue to pray fervently, for all of you. I know the kids will treasure having you and Rolf and their little brother home to smother with kisses and hugs. Happy Easter to all!