Things Remain The Same…

Except for a couple of crying fits, Rudy has spent the ENTIRE day sleeping. He was pretty worn out by yesterday so I’m glad he could rest. He is still tolerating the little bit of formula he is getting through a feeding tube so they will probably start giving him a little more tomorrow. They are also (very slowly) decreasing his vent support so that will continue as long as he is stable. The doctor that does the lymphangiograms was finally contacted directly and is eager to do that for Rudy…possibly tomorrow but, most likely, Thursday. The team assures me that it is okay for us not to be here as Rudy will be accompanied by a doctor, nurse and RT for the entire test so I will go home as planned tomorrow morning. Dr. Brian feels the Pleurodesis procedure will occur possibly on Friday depending on what the lymphangiogram tells us…this will be good timing as Rolf and I will be back on Friday. So, we sit and wait for another test result praying for definitive information. Both Rolf and I are so grateful for the lengths to which the doctors here are going on Rudy’s behalf…Dr. Dan was on the phone talking with colleagues back in Boston, etc looking for answers regarding Rudy’s condition, Dr. Mary spent a good bit of her time today tracking down information about the lymphangiogram as well as alternative tests they might consider, Drs. Robert and Rick and Brian are on top of all the details and Dr. Gary, once again, stopped in this evening to check on us so we remain in great hands and everso thankful. I keep thinking over and over if Rudy is giving all the really smart people around here a hard time then Rolf and I are in for a challenge when we get him home! Ha Ha He’ll keep us on our toes for sure…

For those of you who have been following, along with us, the life story of Katie Manning you might be interested in checking out www.kissesfromkatie.org -a brand new website launched by her parents Alan and Vickie to help support children and their families in the midst of prolonged hospital stays. It’s a wonderful new organization in honor of their precious daughter. We sure appreciate the encouragement they have been to us and look forward to supporting their efforts as their work through Kisses From Katie unfolds.

Below are some pics of me, Max and Olivia from the weekend…we went to our neighbor’s house to decorate a gingerbread house. Thanks Jannele! It sure was refreshing to squeeze in some holiday fun in the midst of everything else going on!

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My Apologies to Mr. Pitt

Okay, so after my post last night, I turned on the t.v. to watch the news while I pumped one last time before bed (YES, I’m still pumping but no longer storing…just “pumpin’ and dumpin'” to keep my milk flow going). Anyway, I turned to channel 7 and whose face is filling up the screen?…Brad Pitt’s!!! They were reporting on the silly premiere and I began to laugh out loud at the ridiculousness of the whole evening. As anticipated, today is a fresh, new day and Brad Pitt is no longer on my hit list.

More importantly, Rudy is doing much better today. He is currently quite mad so Nurse Carol gave him a little “somethin’ , somethin'” to calm him down. He is so precious! His heart rate and blood pressure have stabilized with meds and they started him on the high-octane, really expensive formula feeds through his feeding tube so we’ll see how he tolerates that today. They still haven’t heard from the doc who does the lymphangiograms so I’ll have more detail on that later but the doctors at rounds this morning want to move on that sooner rather than later now that Rudy is stabilized. So, Rudy will rest in the meantime.

Depending on Rudy’s condition, my plan is to head back to SB tomorrow for a couple of Rescue Mission commitments and the school holiday program. Rolf and I will return to UCLA on Friday and spend the weekend with Rudy while the kids have fun with two dear friends back home. They’ll make a day trip to see Rudy on Saturday and attend the hosptial Christmas party for the pediatric patients and their siblings. ‘Praying for a real good day with the family here together on Saturday.

You Know You’re Losing It When…

…you yell at a security guard protecting Brad Pitt and Cate Blanchett at their movie premiere!

Now, I’m a pretty patient, measured person but once in awhile I hit a wall and let it all loose like the day I took money from a homeless person when we lived in South Central L.A. and like tonight while on my way to dinner. I broke away from Rudy late for dinner tonight and though the cafeteria food at the hospital is really quite good, I felt like getting something a little different so I walked into Westwood to grab a bite at California Pizza Kitchen. I made it within less than a block of the restaurant when I was stopped by a security guard on duty at a premiere for Brad Pitt’s new movie. The problem was that the sidewalk on both sides of the street I needed to walk down was closed and yet the restaurant was just a few yards away past the barracade. Brad and Cate et al were safely stashed away in the theater watching their show and the crowds had all dispersed…what would be the harm in making my way across the barracade to the restaurant?…it would take seconds! Apparently there would have been alot of harm in it because I got a rude and abrasive rebuke followed by instructions to walk back from where I came, down a stinky, dark alley and all around a large block to come at the restaurant from the other side. Oh my, this did not sit well with me and all of a sudden I found myself in a heated discussion with a rather large man who towered over me by a foot or two. I SOOOOOOOO wanted to pull the ol’ “my infant son is in the ICU” card but after engaging with him I realized I didn’t have the energy for the fight, I told him just that and crossed the barracade anyway. There was no way after the draining day I had that I was going to inconvenience myself for a MOVIE PREMIERE!!! I sat eating my Greek Pizza seething and getting increasingly mad at Brad Pitt! Oh my, I am losing it! You’ll be happy to know that I made it back to the hospital without yelling at anybody and found the precious boy awake and alert for a few minutes. I guess we both could use a good night’s sleep. Rudy is the only CTICU patient tonight so it’s pretty quiet on our side of the unit. We’re sitting here listening to Christmas music looking forward to a fresh new start tomorrow…

Three Steps Back?

Well, if I count the number of tubes/lines that were REINSERTED into Rudy today, I’d say we took 3 steps backwards! I drove back to UCLA this morning from a great weekend with the kids in SB to find a room full of folks in Rudy’s room (never a good sign). Dr. Mary (pronounced “Marie”) caught me at the door to tell me that Rudy was struggling with low blood pressure and low saturation numbers as well as needing more vent support because of a high heart rate. All the indicators were pointing toward infection again. (There are two nasty bacteria that keep recurring from around his ventilator (ET) tube) After the morning rounds, a chest x-ray AND chest ultrasound, the docs determined it was time to put the chest tube back in. As Dr. Rick described, the amount of fluid detected in the x-ray and ultrasound wouldn’t necessarily warrant the chest tube but because Rudy’s system is weakened by the infection, they need to get rid of the pressure…he just can’t breathe past it. In addition to the chest tube, they put in an arterial line (ART) to more accurately monitor his blood pressure. Then, late this afternoon, the nurse put his urine catheter back in his tollywaffer since he wasn’t urinating and they need to monitor that more closely again as well! Ugh!!! As a result, he has been sedated most of today and just now opened his eyes long enough to look at me, give me a quick “hello”, and then sacked out again. Right now he is stable…his numbers are back where they should be but it took all day to tweak everything (from vent settings to meds to blood transfusions, etc) just right…it can really be a maddening balancing act sometimes.

This chylothorax fluid continues to be a real beast!!! Last week I left with the impression that it was still just a matter of time…I talked to a couple of doctors who said they’ve seen prolonged battles with chylothorax fluid before that eventually cleared up and that was somehow comforting to me. Drs Brian and Dan, however, feel we have run out of time to wait much longer…As Dr. Dan described, the longterm cases of chylothorax fluid they’ve seen did not prevent the patient from being extubated…in Rudy’s case it is and we just can’t wait to extubate him. It’s a vicious circle…we can’t extubate until the fluid is gone and as long as Rudy is intubated he’ll battle this recurring infection weakening his system in general!!!

As I understand it, the lymphatic system collects the fluid from the venous system and takes it back to the heart through the thoracic duct. For whatever reason, the fluid in Rudy’s lymphatic system is leaking which is why they went in and ligated the duct (which normally causes it to stop leaking). For an unknown reason it didn’t stop the fluid from leaking in Rudy which means there may be another thoracic duct (HIGHLY unlikely) or an extra lymphatic vessel somewhere that is leaking. To determine where the fluid is coming from, the team is considering a LYMPHANGIOGRAM. Apparently it is pretty rare and only one doctor at UCLA does it…they are waiting to hear back from this doctor so I will know more details later. It would basically map out the lymphatic system and potentially show where the fluid is coming from exactly allowing Dr. Brian to go in and hopefully fix it. The lymphangiogram would be to the lymphatic system what Dr. Dan’s heart catheterization was to Rudy’s heart last week – a test that would hopefully give us some definitive information. The results would help Dr. Brian determine what to do next…possibly a procedure called PLEURODESIS which closes off this space between the lungs and chest cavity preventing the fluid from accumulating.

I don’t know…it’s all a bunch of crazy information that, for now, doesn’t really mean a whole lot to me…I just REALLY want a breakthrough (as does EVERYONE else around here!). I still would welcome a divine breakthrough for Rudy’s sake while at the same time bypassing the need for me to try to understand all the above information!!!!!! Well, my little man is waking up finally! I better go tell him how much I love him!!! Thank you for praying…

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.

Mommy Therapy

Today was a full day…after a challenging day yesterday, Rudy continued to struggle today with an inconsistent heart rate and labored breathing. At one point he broke into a cold sweat and his coloring turned for the worse…it was unsettling to watch him. On the other hand, today’s chest xray showed some fluid build-up in his chest but not enough to need another chest drain so for now he remains tube-less!!! The night team will watch him closely and if his chest starts to look bigger or his respiratory condition worsens, they’ll reconsider. For several weeks now we’ve been battling a triple threat…Rudy’s low thyroid function, the fluid in his chest AND malnutrition. Based on the most recent test results, the thyroid treatment he has been on has increased his thyroid function, his malnutrition numbers have improved and, as I’ve already explained, the fluid is still an issue but getting better so, in general, I think we are moving forward. Why he has struggled so the past couple of days, I’m not sure, but I’m not going to let it distract me from the slow progress he is making and I’m praying that it is just a temporary hiccup.

We did get to add a long-awaited element to Rudy’s treatment plan today…a little something I like to call “Mommy Therapy”! I’ve been unable to hold Rudy all this time mainly because of his ET (ventilator) tube and his chest tubes but because he didn’t have his chest tube anymore, I got the nerve up to ask Dr. Dan if I could hold Rudy joking that my holding him was probably the missing link in his ability to get well. Dr. Dan consulted good ol’ Dr. Rick who gave his okay without skipping a beat and this afternoon I held Rudy (with the help of nurses Alisa and Amy) for about 45 minutes! It was wonderful and you know what? During the entire time I held him, Rudy was calm and his heart rate didn’t dip once…maybe I AM the missing link!!!!! Ha Well, this special moment just happened to be taking place while the doctors did their afternoon rounds so Dr. Brian stepped in briefly to see what was going on…as he turned and left the room he said, “That made my day!”. You can bet it made mine too!!

I’m so sorry Daddy wasn’t here to share in the moment but maybe he’ll get his turn next as he is feeling a bit better and is planning to make the drive down tomorrow. Today was another day filled with lots of different emotions but it is ending with a baby boy resting comfortably in his crib and a Mama by his side with a full heart!

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A Special Visit

Now, I don’t want to take away from the “specialness” of any of the visits we’ve had from friends because we sure appreciate those who have come to meet our little man but yesterday’s visit from Grace was particularly sweet. Gracie and her husband Marlin are dear friends of ours from the “San Diego” chapter of my life and we have enjoyed watching their family (which includes Nate, Josh, Luke and CeCe) do life together for the past 18 years. Rolf and I have not only enjoyed their friendship all these years, but we have also appreciated their example of loving Jesus, serving the community around them and, most of all, in raising a family that does the same.

Because of our deep love and respect for the whole VanNortwick family (affectionately known as the Van Clan), we’ve asked Grace and Marlin to be Rudy’s godparents. We started the tradition of “adopting” godparents for our kids when Wilson was born in the hopes that these dear friends would commit to pray for our kids, to be an extra source of counsel, love and encouragement in their lives and to help us be better parents. For that reason, we chose friends who are all at different stages in life bringing with them a variety of unique life experiences to speak into our family’s life. It has been a rich experience for us to have these dear friends (some close by and some far away) a part of our extended family. So as we honor Rudy’s godparents on “Rudy’s Beat”, we take time to thank all of you as well for your investment in our family – especially during this amazing test of endurance and patience…for your sacrifice of time in reading the blog and in praying…AND for your cherished friendship!

The Gallery of Godparents…