As Rolf posted earlier, the attempt at the lymphangiogram was aborted after several attempts to find a vessel big enough…Nurse Jenny described how the doctor and his tech were working with vessels just a tad bit bigger than a strand of hair!!! Amazing… It’s disappointing but not just for us…everyone involved in getting this set up is disappointed and there is comfort in knowing we’re not alone. Rudy has rested comfortably since his return to the room, opening his eyes for a little bit and then falling back into a deep sleep. We’ll hunker-down again and wait for the Pleurodesis to take place on Thursday…Rudy has the #2 slot on the list for that day. Dr. Brian will conduct the procedure through an incision on Rudy’s side…essentially going in and “roughing up” the lung and chest wall so the two will fuse together eliminating the pleural cavity. If it does succeed at getting rid of this fluid then the process of weaning Rudy from the vent could begin next week. If it doesn’t work then we’ll have to go back to waiting for the fluid to stop on it’s own. Dr. Brian described the pleurodesis as the last surgical “ditch effort” in addressing this issue. The risks involved in the procedure itself are minimal…the threat of another disappointment – pretty high BUT, no matter what happens, I’m commited to getting up again, readjusting expectations again and moving forward even if it’s ever-so-slowly! I’m starting to feel a bit like Scarlett O’Hara no matter the disappointments…”afterall, tomorrow is another day”.
On a sweet note, Rudy has gotten alot of special attention today, especially now that he is sporting a brand new hospital gown made ,with love, by Oma. I think Oma has tapped into a new, unexplored market! His little gown is complete with special velcro closures all over to accomodate his lines and tubes – so precious!
a new line in baby hospital gowns!
Your steadfastness in praying is an amazing blessing…thank you for your diligence and faith! I am humbled by the sacrifices made by so many on Rudy’s behalf. Thank you dear friends!!!!!!!
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.
I’m settled back in Rudy’s room…VERY empty without the little man and his rig in here but I’ve unpacked and am catching up on some emails while I wait. Dr. Rick is on the floor this week and he just went downstairs to check on Rudy. They are about 2 hours into what could be a 6-8 hour procedure (it makes sense, now, why it took some time to pull this all together as it’s a much longer process than any of us understood it to be). Dr. Rick reported that they were unable to get to where they need to go in the first attempt so they’re going at it from the other foot and getting the catheter set so the actual test hasn’t begun yet…Rudy is sleeping comfortably and his numbers are good – so grateful he is tolerating it all so far and praying he remains stable throughout the procedure. Dr. Ryan and Nurse Jenny are with him, Drs. Robert and Rick are checking in regularly as is today’s RT and Dr. Collins and his tech are performing the procedure so Rudy is very well attended. Thank you for your continued prayers…I’ll update again later…
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?
Well, if you have to spend Christmas in a hospital, I think the best place to be is the MATTEL Children’s Hospital. The staff and volunteers here did a wonderful job putting on a big Christmas bash for the pediatric patients and their families. Eventhough Rudy was unable to attend, the rest of us enjoyed the fun. To be honest, it has been a strange day of fun and fatigue…our dear friends Patsy and Darlene brought the kids this morning just in time to see Santa who came especially to see Rudy before his big appearance at the party. We noticed something familiar about Santa’s gait and the timbre of his voice as he spent the better part of the day walking around the units and attending two Christmas parties for patients and transplant recipients. We also found it strange that a dedicated and friendly doctor like Dan Levi wasn’t anywhere to be seen all day. Hmmmmmmm?
It was great to have the kids here as we hadn’t all been to visit Rudy together since before Thanksgiving so we’re very grateful for Patsy and Darlene making it possible. So here we were in the midst of all the festive fun but also feeling worn and fatigued. Rolf’s continued back pain and the weekend of waiting for the next, highly anticipated test that will hopefully yield some helpful information were weighing heavy on both me and Rolf today. It’s kind of hard to function in such extremes of emotion at the same time and yet I’m glad for today…
The Child Life Play Area on our floor was turned into a winter wonderland complete with festive decorations, craft tables, a Hot Wheels race ramp, and a yummy buffet. Wilson was a good sport and attended the party for a little bit before retreating to Rudy’s room with a big plate of mashed potatoes for some peace and quiet; in typical Max fashion, he enthusiastically participated in all the activities and stayed long after the rest of us followed Wilson’s lead back to Rudy’s room. The highlight of the day for Olivia (and Rolf, too, I might add…see picture below) was meeting Barbie herself – in the flesh!!! Wow! Poor Santa got a pretty cold and timid reception from Olivia but as soon as Barbie walked into the room, she was in heaven!
The highlight of the day for me and Rolf was the visitors we had trickle in throughout the day. Santa and Barbie came to visit Rudy which I know he appreciated deep down inside. Dr. Brian and his sweet family stopped by on their way in between parties and I was excited to see Baby Logan (who was discharged 2 weeks ago) and his Mommy (Rayme) and big sister Emma who came back to join in the holiday fun. A real special surprise was a visit from Cesar and his mom Maria and sister Liz. They had been to the heart transplant recipients party and we were so blessed they took the time to visit us…they were eager to hear how Rudy is doing and, as always, encouraged us so. Cesar looks FANTASTIC and is just as charming as ever.
On the Rudy front, he has continued to handle his nutrition well, so thank you for the specific prayers to that end. They have upped his feed rate one cc each day so that he is now up to 5cc per hour. He’s never gotten anywhere close to this before and tonight they are going to start to scale back the intravenous feeds so they can continue to increase the feeds to his tummy. He’s had a peaceful day otherwise, though he may have something to say about having to endure his first Christmas worth of “Rudolf” jokes.
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 