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

12-10-08 Happy 10-week Birthday!

Well, it’s just about time for the morning shift change.  Nurse Marilyn is finishing up Rudy’s sponge bath and morning meds.  I’m packing my bags and getting ready to head home to Santa Barbara.  As always, it’s hard to tear myself away…it’s never easy to leave him just as it’s hard to leave the other children at the end of our weekends together.  So I leave praying that Rudy has another calm day in my absence and continues to gain strength.  I’m encouraged by the fact that he is tolerating the formula feeds to his stomach and digesting most of it!  Go, Rudy, Go!! 

Before I sign off for this visit I wanted to wish Rudy a Happy Birthday!  10 weeks today!!!  My, oh, my with each passing week it continues to be unbelievable to me where this journey is taking us.  How thankful I am for this precious boy!  Stay safe, little one, Mommy and Daddy will be back on Friday!

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!

 

gingerbread-2

 

olivia-gingerbread

max-gingerbread

 

finished-gingerbread

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…

All wired-up
All wired-up
12-8-08
12-8-08
sweet one
sweet one

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

004-2football-with-rudyThis 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.

Daddy-love
Daddy-love

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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.