One more day’s wait…

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.

A boost to the spirits…

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! — How cool is it to be friends with such good-looking people?

I’ll wait for my own elevator ride…

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.

Update from Back at the Bedside

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.

My mind is rarely in the same room as my body

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.

Fasting and Prayer While Rudy Feeds

Our good friend, Bob Drummond, approached me this week with a proposal that we highly welcome. As the doctors are finding it difficult to explain Rudy’s lack of progress and are trying new things, this would be a great time for some focused prayer. So, please read below and join as you feel led–

Rolf and Trish have allowed me to be a “guest poster” on Rudy’s Beat to encourage the multitude of friends who have so faithfully supported the Geyling family during this season of challenge and uncertainty for a time of prayer and fasting for Baby Rudy. Acknowledging the wonderful grace God has administered through the dedicated and talented doctors and nurses who have so expertly cared for Rudy, we also recognize the need to rely on the power of our personal and powerful God to bring healing or change when we get to the limits of our human abilities and wisdom. As you are aware, there are two areas that are crucial to Rudy’s healing and development right now: the stoppage of the unexplained fluid leaking into his chest cavity and his ability to take and maintain nourishment so he can develop the strength he needs to progress. As you know, the progress in these important milestones has been inconsistent, even confounding, yet essential for his growth and health. So, as Rudy is slowly beginning to take nourishment through a feeding tube and Rolf and Trish have to make some important decisions regarding the next treatment options, I think it is appropriate that we join together (as we can) for a time of prayer and possibly. fasting, on Thursday or Friday this week, as is best for you. This exhortation is given with the full respect of the different faith traditions of Rudy’s supporters and that prayer and fasting can take many forms, from full fasts to fasting to and praying for one meal a day. In our freedom in Christ this is not about doing “it right” or like others do. God does not need our formulas or prescriptions, just our humble faith and acknowledgment of His Lordship and sovereignty over all things, including Rudy’s little body. So, as you are led, I invite you to join the literally hundreds of people from all around the world who are following Rudy through this blog in a dedicated time of fasting and prayer for Rudy on Thursday or Friday this week. Let’s ask our gracious Lord to bring an end to the fluid leakage as He sees fit and that Rudy be able to take and tolerate the nutrition he so desperately needs. Over the years I have observed that one of redemptive miracles in times of great challenge and crisis is how the invisible Body of Christ can become so visible to others through acts of love and sacrifice. The outpouring of love and support for the Geylings and Baby Rudy is evidence of this, as people all over the world, many of whom have never met the Geylings, have been united in their love, support and prayers. This is a powerful witness to a watching world of the reality of the living God we love. On behalf of the family and friends, we express our thanks and great appreciation for you faithful prayers and support! It has been literally miraculous. Again, I ask you to join us for this time of dedicated prayer and fasting.

Standing with you for Rudy and the Geylings.

Pastor Bob

The third time was really a charm

004-2 football-with-rudy This holding Rudy thing hasn’t become old hat yet, so forgive me if I gush. Today was the BEST. Nurse Barbara proved to be a pro and in a matter of seconds (instead of the previous fussing with wires and tubes) had me and Rudy set up in the recliner. While previously his heart rate would elevate during the move and it would take several minutes for things to calm down and get in range, today it was very clear that he knew where he was and liked it—never moved much from 160 bpm. So, we didn’t get just one of those token “hold the baby long enough to take a picture” moments but about 2 ½ hours (or more importantly, almost the entire Giants-Eagles game). The result of the game wasn’t what we wanted, but it was a proud day of introducing him to the classic discipline close friends and family refer to as “rolfing” (dozing off in the recliner and missing most of the key moments of the game). Pure bliss.

I got up from our session to find that Rudy had leaked a good bit of chest fluid onto my shirt. The site where the chest tube was continues to put forth fluid regularly—on the one hand this is good as it doesn’t allow it to collect on his chest and impede his breathing, but it still means that there’s a source from which the fluid is originating. The team was content to let things trickle for a bit to see if it would subside, but there are concerns about sterility so they’ve called for a surgeon to put in a stitch. For those who have been praying for this little issue, these next couple of days will be crucial to see if the pleural effusions come back. We want to be done with chest tubes.

During the switch back from my lap to the bed, Barbara thought to bring in a scale to check Rudy’s weight in a few seconds unplugged from most of the gear. After a couple of adjustments, she worked it out to 3.89 kilos (8 ½ lbs–2lbs more than at birth). That means I haven’t been the only one in our family sitting around getting fatter over the last nine weeks.

I hate to tear myself away from Rudy now, but it’s 1pm and we are planning to have a Sunday evening together with Wilson, Max and Olivia before Trish comes back to assume duty here on Monday morning. I’m leaving here with a great amount of peace, though. It was so good to see Rudy and to be reminded anew of the masses of people who are with him in this journey. There are those dedicated souls who have eyes on him around the clock, but also legions supporting him in prayer from far and wide (Rudysbeat went over 50,000 hits this weekend.) Thanks for being a part of this.

The only thing better than holding Rudy once…

Is holding him twice!! This is so new that Trish and I are likely going to keep score on this for awhile, but today Nurses Gladys and Rosella got things set up so I could sit with him by myself without anyone needing to be nearby holding a hose. We had a precious hour together where I found myself praying that the impact of each minute in my arms would be multiplied beyond what it actually was. After nine weeks of lying only on an unmoving bed, it must be a very new sensation to lie against another breathing person. Thanks for celebrating with us in this new development and please continue to pray that no tubes need to be inserted–as much as everyone here believes that babies should be held, his safety and medical needs come first.

It’s been a quiet day here today and the plan set forth was followed–get fluid off of Rudy and let him rest. So far, the chest looks clear but we still could use prayer. Rudy’s gone a few days with a clear chest when the tube came out previously, only to have the fluid return. We’re being guarded and realistic–he doesn’t need to turn any corners quickly, he just needs to continue making progress along his current trajectory and we’ll be very happy. The next steps will come.

As I have come to expect, the staff here has been almost as concerned for my comfort as for Rudy’s. I get regular inquiries on my back which seems to be holding up well with meds, heat and the rest of my regimen. Only when one is a bit hobbled does one realize how significant distances can be around here. It’s a big building and an even longer trek to the parking lot, places to eat, etc. So even as I’ve been pacing myself, I was very grateful to come across a crutch leaning up in a remote corner at about 11pm last night. Let him who is without sin cast the first stone, but the prospect of having something to lean on felt pretty good to me. Maybe someday I’ll research what the policy on loaning medical equipment is ahere at the hospital, but for the time being I just assumed and availed myself of its use. For the record, I owe UCLA one crutch. It will be returned to exactly where I found it unless someone contacts me sooner with a suitable description and the location in which it was found. My conscience is relatively clean on the matter, though at about 3am I suddenly wondered if someone who really needed the crutch left it there, returned to find it gone and had to crawl back to their room. I was concerned enough that I ran my thinking by a doctor I feel is of sufficient rank (I won’t name names) this morning and he did not find it problematic, but for some reason also wanted to make sure I knew that the hospital also has a very good psychiatric facility.

So good to be here with Rudy today and a fun visit from our friends Scott and Jamie. From the phone calls home, it sounds like the kids are eating up every minute with Mom. That’s it for now. I’ll spend a few more hours here before I leave Rudy in Nurse Dawn’s cheerful and competent care.

I Got MY Turn!

While my back left me a bit worse for the wear, I made the drive down here in pretty good shape and got back to the familiar surroundings of the CTICU. Great to see my wife and Rudy after the long hiatus.

I’ll skip right to the high point as nurses Aliza and Amy were very excited to give me my chance to hold Rudy. That didn’t come until after Trish left and some of his numbers got ironed out after a transfusion and a fever that needed to break. Really, really cool! Not to bemoan my lot, but in the delivery room there was only time for Rudy to rest on Trish’s chest for a few minutes before the neonatal team took him–so even with all maneuvering around tubes and wires, it was some of the best 45 minutes I can remember to hold him and let him look up at me past his chubby cheeks. Just like with Trish, he got nice and calm and I got to run my fingers all the way through his hair and feel his soft back pressing up against my hand with each breath. I’ve got pictures, but no cable–so we’ll have to post them next time Trish has the camera. She got to go first, but if all goes well I may get additional chances before the weekend is up as this could be a daily thing.

I had been prepared for Rudy’s puffy appearance from the TPN and steroids and just about every other person who comes in here assures us this will go away. He does look he’s doing that “even my dog is chubby” routine from elementary school. The docs are pleased that, since the chest tube came out on Wednesday, they did not have to replace it Thursday AM as they anticipated. So far the pleural effusions aren’t there–but Rudy’s been known to hold off a few days before on this kind of thing. The chest Xray this morning didn’t show much fluid either so, in addition to keeping the medications going, they are limiting his fluids as much as they can–the less fluid going in his body to start with, the less can accumulate on his chest. So we’re praying guardedly and fully content to let Rudy make his own slow progress, but it would be great to see this chylothorax go away without there needing to be any other chest tubes placed for drainage. Only then can we look at feeding and breathing on his own.

In the brief time Trish and I were together today (she looked hot, by the way), we did have a meeting with Dr. David Feinberg, CEO of the Medical Center. He had introduced himself to Trish a couple of weeks ago as he regularly makes walks through the hospital to meet patients and families and wanted to hear more abour experience and any feedback we had. So we had a nice 45 minute chat where we were able to both share our high regard for the team of people caring for Rudy and also speak to some of the things he wanted to hear about improvements they might be able to make in assisting families like ours. Always places to improve, but impressive institutions have impressive leadership–many thanks, Dr. Feinberg!

As upbeat as today was, I can’t end this post without sharing one of those simultaneous contrasts that make for such a loaded experience here in the CTICU. Right around the time I was getting the chance to hold Rudy, I noticed “the vibe” descend on the unit. It’s something that you might not pick up on if you haven’t spent weeks here, but all eyes started to focus the room next door–the one with the new little girl who we also suspect was an HLHS patient. Staff began to enter and exit frequently. Nurses covered for each other in adjoining rooms so the one there could have extra assistance. I could picture the focused intensity of the doctors in the room but all I saw were the others who stood outside with expressions very different from the lightness that befits a late Friday afternoon. Equipment and carts were rolled in–the brisk cadences sometimes evolving into running steps. And then later in the hour it became quiet…the staff carefully wheeled back equipment and doctors walked away slowly saying little. Professionals all, but some sure looked like they were going back about business with moist eyes. The parents I never got to introduce myself to walked away with tears streaming from theirs with only a small collection of belongings in a pink hospital tub. The drapes in the room were drawn when I left for dinner and, when I got back it was all too clean and empty. There’s rightfully much attention paid to patient confidentiality here but even without that, I dare not ask. Is there any possible reason they could have transferred her down to the NICU? This soon after a Norwood? Prep for a transfer doesn’t look like that. Our burden may be one of indefinite waiting, but I’ll readily assume it this weekend in light of what I fear others are having to endure.

This is indeed a savage monster. Today’s simple joy is all the more precious when I realize how fortunate we are even for this. Thanks for walking with Rudy in his fight.

Changing of the Guard

Well, I’ve had enough of this. I know Rudy’s travails are the focus of this blog, but I had a lousy couple of weeks dealing with my back. I wish I could say my demeanor throughout this has been one of stoic endurance, long opportunities to contemplate the quiet and meditate on God’s word (as a seminary graduate should), but truth be told the last two weeks of back pain have been much like the last nine weeks of Rudy’s situation. We try to be as thoughtful as we can, but one comes to realize it’s more a game of survival–sometimes day to day and sometimes minute to minute; so my prayers aren’t birthed from time set aside for meditation but erupt sporadically in the midst of chaos. Usually a hurried tantrum of four-word sentences (much different than I would write here). Maybe other people can run this at a different pace, but this is mine.

So Wednesday night, I was extremely frustrated after several days hobbling around the house and fighting on my feet just long enough to help the kids before returning to the elusive quest of finding a comfortable position. More than anything, I dreaded the thought of not being strong enough to see Rudy again (it’s been almost two weeks). So, I opened my bible and it landed on Psalm 142 where David hiding in a cave utters, “I pour out my complaint before him. I tell my trouble before him…when my spirit is faint, you know my way…no refuge remains to me” ending with the prayer for a deliverance that can only come from God.

So I took liberty in pouring out my complaints for awhile, taking a chance that David probably elaborated with some Hebrew vernacular that might have been too pedestrian to make it into the Bible. When I think about how much troubles me about this experience it goes far beyond Rudy’s epic struggle to what this is doing to our family and our physical selves as it extends to unknown durations. David’s isolation came through what he wrote and that resonated with me as it’s part of our reality. While on the one hand we are overwhelmed and grateful for the love that surrounds us and the way people have come along side us, I hope it’s not out of line to feel all alone in the midst of it. This is ours to fight. We own it. We’ll live with the outcomes as we live with the day-to-day realities. That’s our lonely cave and I identify with David complaining as he tried to find comfort in the rocks and mud of his.

Long story short, I had a much better night’s sleep and Thursday was a markedly improved day. Give credit to God for hearing prayer, the right combination of pain meds, anti-inflammatories and muscle relaxants and, as those in my office heard me raving A GOOD CUP OF COFFEE (I’m serious–my whole pain scale changed this AM again with my first cup. The days at home where I couldn’t make it to the kitchen to get the brew going all ended up very painful–go figure–Peets rules!).

So I’m just about to get in the car and get my Rudy fix. I’ve come to realize the seat of my truck has about the best lumbar support of any seat we own (yeah, Toyota!) and if the drive gets me too stiff, I know there are wheelchairs right inside the door of the hospital. I can’t wait. Daddy’s coming!

As I’ll only get to see Trish briefly before she comes to be with the kids, allow us a married moment. Honey, we have a new morning tradition here in that we start with the kids opening up their advent calendars to eat the chocolate before they make any decision regarding breakfast. Go ahead and try to change it if you want, but understand the impact this might have on your approval ratings.