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!
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!!!