Brotherly (and Sisterly) Love

The Bruin Bear
The Bruin Bear
We started November off right with some family time together on the UCLA campus on, believe it or not, a rainy day!
Some quiet time with Rudy…Sunday Nov. 2nd…
Some Maxi-love
Some Maxi-love
A big smile from big brother...
A big smile from big brother...
Rudy has alot of angels by his bedside...including this one in the flesh.
Rudy has alot of angels by his bedside...including this one in the flesh.
How grateful we are for Oma and Opa and the many friends who have transported the kids back and forth on the weekends to see Rudy.  It’s not an easy way to get to know your new baby brother but how very proud we are of the kids and their efforts to engage in this journey as much as they are able to.  Rudy knows how much he is loved by his big brothers and sister!
There is some good news on the “Rudy Front”…Dr. Brian just came in and said he’s encouraged by the decreased fluid output from the chest tubes!!!!!!  There is little fluid coming out of the left chest tube and although there is still fluid draining from the right side, it IS less!  If the output continues at this rate or decreases even more, he will cancel the surgical procedure on Thursday.  This is great news.  (Thank you, Jesus, for such a tangible answer to prayer!!)  So, we ask that you continue to pray for this fluid to stop draining completely!  Rudy looks a little pale to me today and when he is awake, he’s fussy but his numbers are stable so it has been a quiet morning.  Well, it’s time for my daily cup of soup downstairs…more later!

Pray for the fluid to stop…

The odd existence we’re living here make times of focused or extended prayer a challenge.  Today, like many days, we uttered a quick “Please, Jesus, let this be a calm day” as we stepped off the elevator on the 5th floor.  Unfortunately we were met with a bump shortly after we got here as we were having a check in with Dr. Reemtsen.  Alarms started to go off and, after a couple nonchalant looks at the screen (the usual first response), the tone got more concerned and then the inexplicable signal went off and six people were suddenly at the bedside dealing with the breathing tube.  Just a few minutes passed and, almost as quickly as they came in, everyone was gone.  No big deal–possibly just an obstruction in the breathing tube.  I’m glad there’s always a couple that check on us before going and we usually lie and go along with the “no big deal” line, but I don’t think we fool them with our ashen complexions and tears welling up.  I don’t think Rudy was ever in significant danger, but I don’t think we’ll ever get used to jolts like this.  Suddenly we’re both in need of comfort foods and are craving Big Macs and lots of french fries (you go to your happy place, we’ll go to ours).

The conversation with Dr. Reemtsen did set forth a plan for the week.  Rudy’s cardiac function continues to be very strong, so much that Dr. Harrison recommended that his next echocardiogram be at his discharge.  Everything they are addressing now has little to do with heart function, the biggest issue being the chylothorax (lymphatic fluid in the chest cavity).  The hope has been that the drainage into the chest drain would taper off, but that hasn’t been the case.  The medicine they’ve been giving him (Octreotide) should have worked by now, but they’re going to give it a few more days.  If there’s no change, the plan is to do another surgery on Thursday to ligate the thoracic duct.  Not a major surgery, but surely one we’d rather not see Rudy have to endure, so please pray that this would heal itself and the flow of fluid to the drains would stop.  So far we’ve seen fluids be very responsive to prayer so let’s channel the same effort that went into producing urine into the ceasing of lymphatic fluid.

Dr. Reemtsen feels that Rudy won’t make much progress until this can be corrected as all of his nutrition is likely just flowing out of his body into the drains.  They are also looking closely at his endocrine system as they are wondering if there’s some steriod deficiency or ongoing thyroid issues that are hindering his ability to move forward.  There’s also been consultation with the infectious diseases team as, though no significant cultures have grown, some of his symptoms (low blood pressure, occasional fevers) are making it tough to rule out).  In any case of extended hospitalization, the threat of infection emerges, so we’re praying against this.

That’s this morning’s update.  In the midst of it all, Rudy is lying very calmly and loves looking up at his aquarium.  I do wonder often what kind of thoughts are going on in his little mind through all of this.

Due Date – November 2, 2008

11-2-08
Rudy

It’s hard to believe today was Rudy’s original due date…my oh my, his birthday seems a lifetime ago. 

We spent the day at his side watching numbers carefully and quietly with the children in tow in the morning and then with a string of longtime friends in the afternoon.  Rudy’s status is stable this evening.  His blood pressure fluctuated most of the day and he did battle a low-grade fever but no major dips like yesterday.  The kids got to see him and talk to him while he was awake and alert which was fun for them.  I was happy for the little bit of time they had with him. 
So, here we are at the start of another week…I’m not sure I have the energy to relay details tonight about Rudy’s condition…in general, it remains the same and although the long wait for “real” progress is wearisome, we remain hopeful…hopeful that this week will hold more milestones for Rudy.  Speaking of milestones, this coming week holds two special celebrations in the life of our family…our 16th wedding anniversary on the 7th and the Rescue Mission’s Drug and Alcohol Recovery Program Graduation on the 8th!  Wouldn’t it be cool to add “Rudy breathing on his own” to the list?!!!! 
P.S.  I’m happy to report that the older kids had a fun Halloween…The boys enjoyed trick-or-treating with special neighbors and Olivia went to her first Halloween Party!  Thanks Katie, Nancy, Jacob, Mason, Brandon and Jannele!

Tougher Than the Rest

If your rough enough for love, baby I’m tougher than the rest.  —Bruce Springsteen

This lyric seems relevant tonight as we had another one of those afternoons that are all too commonplace in this process; one that stretches us and makes us realize that this process with Rudy takes toughness.  Just when you think you’ve been pushed as far as you can go, there’s another shove.

The chest drain went in smoothly and gave off lots of fluid, but Rudy’s low blood pressure was of concern all afternoon.  We went out to get some fresh air with the kids and shortly after we returned to the room the activity in the room suddenly picked up.  I still wonder how these ICU people communicate–first just a doctor and a nurse…then a second doctor…then more nurses and care partners.  The room stayed quiet, but focused and intense to where we could pick up that it would be best to pull out the kids and Oma and Opa out to make room for 8 people that were now at Rudy’s bedside.  The phones started ringing as other members of the team answered their pages and I could pick up the concern as I stood watching from the doorway.  I don’t think Rudy was in as much distress as some of the previous episodes and, probably in shorter time than it felt, they were able to find the right cocktail of medications to get his BP where it needed, but it was disheartening for me to watch.  He’s so fragile and delicate and the going is so slow that it really doesn’t feel like we’ve made much progress over where we were a week ago.  My kids were in the next room–they need us just as much as Rudy does.  Yet it’s so hard for me to focus my attention anywhere else.

That Springsteen lyric first came to me yesterday as we were watching the pediatric patients trick or treat down the hallway outside.  The staff had taken time to set up at different doorways so they could have as realistic an experience as possible.  The kids were cute, but I couldn’t take my eyes off the parents even though few of us were able to make more than a few seconds eye contact.  This wasn’t the Halloween they hoped for, yet they show up for their kids and enthusiastically wheel them down the hallway, making sure that IV lines don’t snag and that costumes can somehow be tied on around the medical equipment that needs to stay attached to their kids.  Some of them do it very tentatively and hesitantly and I hope that means that this holiday in the hospital is an anomaly.  But other parents move instinctively and maneuver the equipment with a second nature that makes it clear that this isn’t the first time they’ve had to do this.  These are the tough ones–tougher than the rest.  Who knew what our love for our kids would demand of us.

 

Another morning mystery…

Rudy had a very peaceful night and we were hopeful that today would be a day of gaining strength for him, but unfortunately he’s run into difficulty breathing over the last couple of hours and the team is trying to figure things out.  They ran a full battery of exams at about 7am which all came back clear (blood tests, chest Xray, etc) but they’ve just ordered a repeat of them all (it’s 11:45).  They’ve backed the ventilator way up and are trying to figure out the low blood pressure.  Another one of those mornings where there’s lots of activity in the room and several hushed conversations at bedside between doctors, nurses and respiratory techs.  I hear the distinctive sound of the Xray machine rolling down the hallway toward our room right now, so we’ll have to clear out.

The kids are showing up in the next hour and I sure wish they would get to see Rudy at his best, but for some reason he’s having a battle during most of their visits.  Right now, he clearly doesn’t like what their doing and is letting us know with one of his silent tantrums.  He’s not making any noise, but as he’s lifting his heart rate above 200 bpm and dropping his O2 saturation below 50%, it’s by no means quiet in here–plenty of racket from all of the alarms.

We’ve had a lot of discharges on the unit.  Hopefully it means a lot fewer kids had to spend Halloween here.  For staffing purposes, they moved just about everyone they could to another wing so it’s a bit of a ghost town on our end with lots of empty rooms.  The upside is I can go into the vacated rooms and exchange our chairs for better ones (kind of funny all the swapping that goes on here as patients leave).

The Xray just came back and it showed a significant accumulation of fluid, so they’re going to have to replace the chest tube.  Up until now, they’ve watched it closely and been a bit surprised that the fluid hasn’t come back, but things have changed quickly since today’s early morning Xray.  So, unfortunately the kids will have about 15 minutes to say hello and then we have to clear out for the procedure.