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.

 

 

 

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!

 

 

 

…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…

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!

 

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…

 

‘Got a glimpse of Rudy’s precious cheeks today during a vent tube tape change…made me want to climb up into his crib and snuggle those yummy cheeks!   Well, Rudy sure had a hard time settling down today.  At the time of my last post this morning, the RT and his nurse were monitoring him closely after an episode where his heart rate plunged and his breathing was quite labored.  They suctioned his ventilator tube which normally helps calm him down but today he continued to struggle for his breaths.  They then tried to sedate him a bit but that didn’t help either.  Dr. Rick came in, examined him, and ordered an x-ray.  The x-ray showed that his chest tube was not positioned correctly and about to come out.  He felt the best course of action was to remove the tube and see what happens to the fluid in his chest overnight…he wants to give Rudy the night to work some magic and possibly absorb the fluid proving that he doesn’t need the chest tube anymore.  If the fluid does build up again then they will put a new, fresh chest tube drain in tomorrow.  So he’ll be chest tube-less for one night at least.  It goes without saying, though, that it would be WONDERFUL if the fluid found its own way out of Rudy’s chest.    The medical team was in and out a good bit all day and my dear friend, Grace, asked “Is it always this busy in here”.  Nope, not always…