While the trip to the cath lab was supposed to be a relatively straightforward procedure late on a Friday afternoon, it’s gotten a bit more involved. The line they were investigating in his right arm apparently had come out of the vein somewhere down the line and needed to be removed. The team tried to start another one but immediately saw Rudy bruise up and decided that it was unwise to keep trying there, so they’re starting a groin line. As they were doing imaging on that side of the body, they also noticed a significant effusion on the left side of his chest (the pleurodesis was on the right), so they’re going to insert a drain there too. Dr. Brian said he saw some fluid there when he did the pleurodesis and wouldn’t be suprised that some would collect there in the wake of such a procedure, so please pray that’s all it is and that it will clear up quickly with the drain.
I’ll post something when Rudy gets back in the room. Those loops just seem to keep coming.
Our Fridays tend to be frenzied days on this journey. I had a good week in SB and actually felt an ability to focus on some work stuff even while being very concerned about all that’s been going on at UCLA–quite a few nights I hit a second wind and was able to work from 9pm until after midnight. It’s good to feel a bit more on top things.
Today has had it’s high points: a fantastic breakfast with great company (thanks, Will), a drive down the coast next to a Pacific smooth as glass (just screaming to be paddled), getting to see my wife and have lunch with her, getting to see my baby boy and rest my forehead on top of his, a sweet attempt by Nurses Sara, Heather and Dr. Andy to surprise us with a Christmas gift (I’ll let Trish tell that story), and….a visit from a surprise guest (check back for pics soon–he’s HUGE!). It’s also had it’s lows: having to say goodbye to the kids, not being able to kayak out into that ocean, getting such a short time with my wife, and seeing my baby boy in a significant amount of pain.
As Trish mentioned, pleurodesis is a very painful procedure. As the object is to fuse the pleura (lung lining) to the chest wall by creating scar tissue, it means using surgical instruments to rough up the sides of the chest cavity and then putting substances there to create even more inflammation. Must feel kind of like getting scraped with sandpaper and then rubbing alcohol into it. That searing pain means it’s working. So, Rudy has been uncomfortable and his heart rate was very high most of the night (180 to 210 bpm). By the time I got here today he was much more relaxed thanks to medication (140 to 160 bpm). Too early to say if it’s working, but I was glad to see very little coming out of his chest tube.
Nurse Anita tried to put in a pic line yesterday and it’s got a kink of some sort in it. The team hasn’t been very happy with the way the lines have looked on that side the whole time, so Rudy’s just been taken down to the cath lab by Dr. Dan for an angiograph so they will have a better idea of where those veins are going. So, I’m sitting here in his room alone since Trish just left. It’s weird to be in here without him–the room is remarkably big when his rig isn’t parked in the middle of it. I’m looking forward to him getting back and just having some quiet hours back sitting with him. Our prayer is that he would have a calm night and a weekend of rest. Even though he’s usually lying in the same crib, transports and the procedures that require them are tiring on him. So once we have him settled in we’ll try for as much calm over the next few days as we can.
That’s it for now, but keep checking back as I know you’re dying to see who the mystery guest today was! (HUGE–I mean it! So great to live in Hollywood.)
Thursday evenings I’m greeted by a stack of paper that’s often larger than any facing me at the office. This is the day that the kids bring home their Thursday folders with lots of completed coursework, bulletins from teachers and the like. Lately, most of the stuff has been getting a half-hearted scan but this one stopped me in my tracks tonight:
It’s easy to get lulled into thinking that Trish and I are fighting for Rudy while the rest of the family watches, but Max reminded me of the fact that there are six of us fighting together. The kids may not own this the way Trish and I can, but they are bearing loads of their own. Overall, I am so impressed with them and their ability to navigate this time, thanks largely to people who have come alongside them. They are doing well under far-from-ideal circumstances–with Trish and I taking turns in LA and seeing a different arrangement caretakers after school. On more than one occasion, each of them has said they wished life was “normal again”. The way they tend to display their stress is in feeling emotion out of proportion to the circumstance–a small disappointment becomes a tantrum; minor anger becomes a tirade.
About a month ago Trish and I realized that as important as it is for us to be with Rudy in the CTICU, it’s just as important for us to be in Goleta with Wilson, Max and Olivia. I can’t even begin to thank everyone who has paid special attention to our kids in the midst of this. In addition to praying that Max’s wish will come true, I also pray that he, Wilson and Olivia will emerge intact from the battle. In meeting with a friend this week, he stressed the importance of making sure that they know that we would just as quickly drop everything for them as we are doing for Rudy–and that might mean giving them attention at Rudy’s expense. Challenging to do, but Rudy is being watched closely and prayed for by hundreds whether we’re there or not. So in the upcoming week, we’re intent on making sure that our Christmas, unique as it may be this year, will include times of uninterrupted focus on these three super kids.
Trish called about an hour ago and said that unfortunately the team was unable to perform the lymphangiogram. They were unable to find a line in Rudy’s little feet to inject through. He’s returned to the room and is probably going to be knocked out for the rest of the day. Obviously not the news we wanted to hear. As much as we try to keep our expectations in check that any one step will mark a turnaround, it’s hard not to be disappointed. From here, they will do a pleurodesis surgery on Thursday which seals the pleural cavity thereby making it impossible for fluid to collect there.
Thanks for praying with us through the day. Wish I could close with a thoughtful statement that puts everything in perspective, but I’ve got little. We remain hopeful, just so long as it doesn’t need to be a happy jumping-around kind of hope; just a resolve that God will get us through. In the meantime, I’m very sad that my son needs to go through all of this.
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.
Trish got a call at 10am en route to UCLA to give consent for the team to start the Lymphangiogram. We understand that this could be a long procedure, so we don’t have an idea when Rudy will emerge from it. Please join us in praying for Rudy’s safety, the skill of the doctors and that it would give some clear indication of how treatment on his chest leak should procede.
On another front, please continue to pray for Rudy’s nutrition. The team had to stop feeds to his stomach overnight as his stomach was getting a bit big. They’re hoping that a bit of a break and some meds for his kidneys will start processings again.
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.
I couldn’t help but daydream a bit since yesterday as I confess I felt some kind of connection between me and Barbie. There’s no reason for alarm as I’m perfectly happy with my wife, but since yesterday I’ve been wondering what would have happened if I met Barbie first. Would life have been one uninterrupted beach day? Would we break it up with happy journeys in the vinyl-coated camper? How many heads would turn as we cruised by in the pink convertible with Skipper along in back? No wonder Ken is always smiling…
The prospects for this weekend had me a bit weary from the outset. While I’m certain the team did everything they could to get the lymphangiogram done last week, there were factors clearly beyond their control. Nonetheless, the prospect of simply having to wait our way through a weekend with little anticipated progress was depressing. As Trish wrote yesterday, the highlights yesterday were offset by the backdrop of how long this journey has been with no idea of an end in sight. Throw in the nagging pinched nerve in my back making it hard to move or find comfortable positions and it has been a challenge to stay positive as we just sit and wait with Rudy. The sheer expanse of time this hospitalization is draining in and of itself. We had an emotional reminder of this yesterday when Trish’s patient armband finally fell off. It’s the one they give moms when they’re admitted and they match it with one on the baby so they know who goes with whom. Mine fell off about six weeks ago, but Trish was more careful in an attempt to keep hers on until Rudy was discharged. It finally gave way yesterday, again signifying the uniqueness of our situation in that it pushes even simple hospital items far beyond their intended lifespan.
Providentially, we had planned on going to our god daughter’s, Jayden Zambrano, dedication at Christian Assembly here in LA. As brief as it was, it was good to see so many good friends from our former church family and ever so good to sit in a familiar place and worship. Thanks everyone. Jayden was resplendent in red velvet and it’s fun to see Joe and Jen, after pouring so much of their lives into other people’s kids, pour into their own. As we prayed over the five babies being dedicated at the service, I prayed for what these parents were setting out on–a journey of joy and love, but one that also holds the potential of stretching them far beyond what they ever imagined. While I would have heard those words and probably spoken them with eloquence previous to Rudy being born, I don’t think I had any idea what it would mean to actually live them. Being parents has asked (no, demanded) more of us than we ever thought we would be able to give, but I suspect that’s also where we’ve come to know how great God’s love and grace is to sustain us through such challenges. I suppose there are some times I actually know God’s grace is sufficient, but more honestly, more often I just have to trust that it is.
We peeled ourselves away from several people we would have wanted to spend the afternoon with to come back here for a couple hours with Rudy before we head up to Santa Barbara where the troops are eagerly awaiting. Trish and I are both very pleased with Rudy’s appearance–his puffy face has receded significantly so we can see his eyes, which were open for a good long visit. As he’s been sleepy most of the weekend, it was fun to have thirty minutes where, after he woke up to Trish’s singing, he was alert and looked calmly back and forth at us. The numbers are holding stable and the prayers being offered for his nutrition are being answered. He’s up to 6ml/hr of formula to his stomach (which means he’s tolerated food for six days straight–compared to about 2days being the longest stretch previously). The team will continue to raise the rate 1ml per day and started dialing back the TPN (intravenous) feeds a corresponding amount–this along with a phasing off of steriods is what’s making his face less puffy and we love that. Looking at him even now, his eyes look like they’re laid closed instead of being pushed closed.
So thanks for your prayers and please continue. Pray that the lymphangiogram would come together Monday and that it would give the team good diagnostic information to address the fluid in Rudy’s chest this week. Progress is coming in small steps, but we’re grateful for it.
With Jayden, Joe and Jen at her dedication.
How cool is it to be friends with such good-looking people?
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.
Trish and I made it here to Rudy at 11am. Still strikes me how routine the whole entry has become. Finding our way through parking and up onto the room is rapid and smooth. Our entry into the unit with bags slung over our shoulder is peppered with greetings to the various nurses, staff and doctors who we haven’t seen for a few days. We’ve been in the room for about three hours and it’s been a constant stream of check-ins with one person after another about what’s been going on the last few days.
The brief status update is that the team is still trying to schedule the lymphangiogram procedure. This is complicated and involves not just the doctor being available, but also the right techs and facility. Some of the best minds in the joint are now involved in what must be a massive e- mail thread to keep moving on this. Drs. Robert, Dan and Mary have all been cautious to set our expectation appropriately–this isn’t a magic bullet and there may not be a crystal clear result, but they do feel that it’s worth it to wait for any information it might give before going ahead with any kind of surgery. So, the surgery option is off the calendar for this afternoon and we are hoping that somehow all of the lymphangiogram pieces will come together for this afternoon, but seeing as we’re approaching 2pm on Friday it might take a logistical miracle.
Once again, arriving here amazes me at the lengths to which so many gifted people are invested in Rudy’s treatment. I only have a taste of the the amount of attention he is commanding. In addition to dogged research and the team discussions, there are phone calls and e-mails to other doctors all around the country–all focused on getting Rudy over the hump. We are so grateful for the hands we’re in.
The one point of progress continues to be Rudy’s nutrition. He’s now up to 4ccs of formula an hour and seems to be tolerating it well. For the time being, Dr. Kelly doesn’t want to make any steps on the ventilator to complicate things, so we’ll focus on nutrition and take the progress there for the time being.
Speaking of nutrition, my stomach is trying to sort out cravings for clam chowder or cream of tomato, which means it must be Friday. Since Nurse Amy couldn’t hold out on her OCD any longer and Rudy has a clean set of sheets, we’ll leave him clean and comfortable and go get some lunch.
Rudy's Beat 