Trish made it safely to UCLA and discovered that they weren’t kidding when they said lymphangiograms are involved procedures that take 6-8 hours to complete. So far, Rudy has been in there for 2 hours and Dr. Rick and other members of the team are going down to radiology regularly to check on him. His numbers are all holding up well.
Stay tuned and pray.
I just heard from UCLA that the Lymphangiogram will take place tomorrow (Tuesday) at 9am. The rarity of this procedure is underscored by the effort it has taken to get doctors, techs, facilities and materials together. Again, I am moved by the lengths to which people go for our son. A few people with many important things to do have been doggedly persistent, and we are especially grateful to Dr. Mary Mazel and Dr. Robert Kelly, who spent a good bit of their weekend tracking things down by phone and e-mail. Again, this is a diagnostic tool that may help the team locate the source of the lymphatic fluid that keeps coming into Rudy’s pleural cavity. Of course, it may reveal nothing, but we would rather wait and have some information before another surgical procedure.
So, please pray for this procedure tomorrow; that it would give the team a clear picture of what’s going on with Rudy so that it can be quickly and easily addressed.
Rudy’s been peaceful all day except for a brief moment just now when he opened his eyes for a look around. As we expected, the lymphangiogram is scheduled for Monday so the plan for this weekend is for Rudy to hold his ground and keep making progress on his nutrition. Waiting ain’t fun but it’s something we’ve learned to do. Thanks for waiting in prayer and please continue as you are able.
A highlight today was a visit from friends we never knew we had. Yvonne from the Office of Clinical Trials here at the Geffen School of Medicine came by. Their office adopted us for Christmas and she delivered a sweet card and gift certificate for our family. We invited her to pass on word about Rudy’s Beat to the folks at the office, so if any of you are reading this, thanks so much—boosts like that mean more than you might think.
I’ve touched before on the notion of the “emotional hospital gowns” we’ve grown used to wearing. We’re grateful Rudy is stable and that we’re not in constant anguish, but there come moments when emotions sideswipe us by surprise and everything just falls out into the open.
I was waiting by myself for the elevator here on the floor when I heard commotion coming up on me from the left. A family was being discharged from maternity. It was a happy procession (as it should be) with Mom in a wheelchair holding the precious cargo, dad and other family members following with luggage, staff and volunteers serving as escorts and lending a hand with balloons and flower arrangements. The elevator I had called for arrived right about the same time they did and, displaying the chivalry my mom taught me, I stepped to the side and held the door for them to get in.
The entry took longer than most as it included the giddy process of getting Mom pushed and turned, getting everyone arranged around her and then the balloons through the door. Not an inordinate amount of time, but long enough for my emotions to surprise me. I would normally have played the role of the pleasant stranger along for the ride with aplomb, offered my congratulations and obligingly gushed over their new baby. But just before the door closed, I stepped away and mumbled about getting the next one. It took me a few minutes to collect myself before I could get it together enough to push the button again. I resolved on the spot that there is NO WAY I’m going to settle for sharing someone else’s elevator ride home. I want my own.
In ten weeks, I’ve experienced just about everything one can (and certainly more than anyone would want to) in this hospital, but one thing I haven’t had is my family elevator ride home. It seems so long ago that I almost have to remind myself that this whole odyssey started with Rudy’s birth on this floor and the subsequent stay in maternity. Since then, there’s been an interruption in the usual progression. I can wait as long as I need to, but I will have my own elevator ride.
Yesterday morning, Livy announced at the breakfast table how glad she was that BOTH of her parents would be home that evening. There’s something surreal about this season, where one can feel distress and comfort at the same time. Today and yesterday, the comfort has been being home together with Trish–it’s been a whirlwind of activity, but good to be in it together.
In the midst of this, I’ve come to identify that my mind and emotions are often not in the place my body is. We’ve had some great events here and even doing things as a team for a short time makes life more peaceful, yet my mind was at UCLA a lot today and I’m so glad for nurses and doctors who gladly field our calls and give us updates on Rudy.
We had a precious time last night celebrating Christmas with our amazing team at the Rescue Mission, where I shared with new-found awareness how powerful it is for people to make a vocation out of coming alongside people in helpless situations. This walk with Rudy has put us in that position of helplessness, where most of the capability we operate under has been peeled away and we are buoyed by people with expertise and compassion who come everyday and pay closer attention to our son than we would ever know how. That’s what our team at the Rescue Mission does every day, and on top of that, they are just a precious group of people we are fortunate to count as friends.
Tonight, we went as a family to the La Patera Elementary Festival of Lights. I am certain every parent walked out of there feeling bummed they weren’t us when they heard how angelic Wilson sang Christmas carols. Again, just great to see everyone and to be at school function together. As this struggle with Rudy stretches on, our concern for our three other children grows so it’s just comforting to be reminded of the school community and it’s concern for our family. Thanks everyone.
The one thing we didn’t attend as a family was the Christmas Tea Trish went to with our Bethel House residents put on by the Rescue Mission Auxiliary. While I was not dismayed at being excluded from a “hen party”, I was moved by the quilt Trish brought home from there. If you’ve been following Rudy’s Beat for some time, you’ve kind of seen it as it’s got most of the pictures from the site on it stitched with carefully chosen Bible verses. Trish says there wasn’t a dry eye the first time she opened it and I know there wasn’t the second time when we opened it at home. Thank you, Lin, Andrea and ladies all for something so instantly precious to us.
As far as Rudy, we are so encouraged by everyone who is joining us in prayer and fasting these two days. He woke up with a fever which agitated him in the morning, but by afternoon he calmed down. The team has been able to gradually up his nutrition to 3ccs an hour (still an infintesimally small amount), but he is tolerating it well so far. There has been no measurable improvement in his chest tube drainage or in his ventilation.
The lymphangiogram procedure ended up not happening today, so they will attempt it tomorrow morning. We’re not exactly sure where this leaves things as far as the surgery scheduled in the afternoon, but we would assume it rare that they would try to do both things in one day without giving Rudy a chance to rest and the doctors a good chance to assess what might be going on.
Thanks for standing with us. We’ll report from Rudy’s bedside tomorrow.
Rudy's Beat 