“Little Rocky”

Rudy made it back to the room at about 7:30.  He’s resting comfortably now, but looks like he went about twelve rounds–but even winning boxers come away with some pretty tough lumps.  Beyond the pain from pleurodesis and the dinged feet from the lymphangiogram, he now has a big bruise on his left side from the chest tube insertion and another on his right arm from where the team tried to deal with the pic line.  We’ve also noticed (see picture below) that he’s losing some hair, perhaps just baby hair coming off, but if anyone’s entitled to stress-related hair loss, I think Rudy qualifies.  He came back kind of chilly, so we’ve got him bundled up with a hat and socks (I chose Spiderman for our superhero) and Nurse Susan just wheeled in a heat lamp and got him tucked under one of the many gift blankets he’s received.  Been quite a week for the little guy.
In our quest to keep the positive in view there is encouragement–beyond simply being glad there aren’t any procedures for Rudy in the upcoming days.  The right side of his chest is draining very little fluid–at this point we can’t say we’re in the clear, but much better to have it this way than seeing lots of fluid.  Dr. Dan had a chance to check on the pleurodesis while he was in the cath lab and he thought things looked really good.  They did see some fluid on the left side, so Dr. Dan put in a chest tube, but it’s a very tiny one.  He only found 10cc of fluid and it appeared to have a lot more blood than chyle, so we’re hoping it’s just from yesterday’s procedure and not more chylothorax.  The lab will tell us definitively what the mix of fluid is and we’ll also watch closely to see how much drainage there is.  Throughout the procedure and now back at the room, his numbers look really good.  Dr. Dan continues to be optimistic as he sees Rudy fighting–he responds to trauma with an increased heart rate; he gets upset about things so that the team needs to take measures to calm him down.  He gets concerned when babies go through procedures and ups and downs that are part of an ICU stay and seem rather lethargic and unresponsive.  Good to have an expert confirmation of what we’re learning about our son’s character.  He’s a fighter–go, Rocky, go!
hair loss
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A Twist to End the Week

While the trip to the cath lab was supposed to be a relatively straightforward procedure late on a Friday afternoon, it’s gotten a bit more involved.  The line they were investigating in his right arm apparently had come out of the vein somewhere down the line and needed to be removed.  The team tried to start another one but immediately saw Rudy bruise up and decided that it was unwise to keep trying there, so they’re starting a groin line.  As they were doing imaging on that side of the body, they also noticed a significant effusion on the left side of his chest (the pleurodesis was on the right), so they’re going to insert a drain there too.  Dr. Brian said he saw some fluid there when he did the pleurodesis and wouldn’t be suprised that some would collect there in the wake of such a procedure, so please pray that’s all it is and that it will clear up quickly with the drain.

I’ll post something when Rudy gets back in the room.  Those loops just seem to keep coming.

A whirlwind of a day…

Our Fridays tend to be frenzied days on this journey.  I had a good week in SB and actually felt an ability to focus on some work stuff even while being very concerned about all that’s been going on at UCLA–quite a few nights I hit a second wind and was able to work from 9pm until after midnight.  It’s good to feel a bit more on top things.

Today has had it’s high points:  a fantastic breakfast with great company (thanks, Will), a drive down the coast next to a Pacific smooth as glass (just screaming to be paddled), getting to see my wife and have lunch with her, getting to see my baby boy and rest my forehead on top of his, a sweet attempt by Nurses Sara, Heather and Dr. Andy to surprise us with a Christmas gift (I’ll let Trish tell that story), and….a visit from a surprise guest (check back for pics soon–he’s HUGE!).  It’s also had it’s lows:  having to say goodbye to the kids, not being able to kayak out into that ocean, getting such a short time with my wife, and seeing my baby boy in a significant amount of pain.

As Trish mentioned, pleurodesis is a very painful procedure.  As the object is to fuse the pleura (lung lining) to the chest wall by creating scar tissue, it means using surgical instruments to rough up the sides of the chest cavity and then putting substances there to create even more inflammation.  Must feel kind of like getting scraped with sandpaper and then rubbing alcohol into it.  That searing pain means it’s working.  So, Rudy has been uncomfortable and his heart rate was very high most of the night (180 to 210 bpm).  By the time I got here today he was much more relaxed thanks to medication (140 to 160 bpm).  Too early to say if it’s working, but I was glad to see very little coming out of his chest tube.

Nurse Anita tried to put in a pic line yesterday and it’s got a kink of some sort in it.  The team hasn’t been very happy with the way the lines have looked on that side the whole time, so Rudy’s just been taken down to the cath lab by Dr. Dan for an angiograph so they will have a better idea of where those veins are going.  So, I’m sitting here in his room alone since Trish just left.  It’s weird to be in here without him–the room is remarkably big when his rig isn’t parked in the middle of it.  I’m looking forward to him getting back and just having some quiet hours back sitting with him.  Our prayer is that he would have a calm night and a weekend of rest.  Even though he’s usually lying in the same crib, transports and the procedures that require them are tiring on him.  So once we have him settled in we’ll try for as much calm over the next few days as we can.

That’s it for now, but keep checking back as I know you’re dying to see who the mystery guest today was!  (HUGE–I mean it!  So great to live in Hollywood.)

Max’s Wish

Thursday evenings I’m greeted by a stack of paper that’s often larger than any facing me at the office.  This is the day that the kids bring home their Thursday folders with lots of completed coursework, bulletins from teachers and the like.  Lately, most of the stuff has been getting a half-hearted scan but this one stopped me in my tracks tonight:

maxs-wish

It’s easy to get lulled into thinking that Trish and I are fighting for Rudy while the rest of the family watches, but Max reminded me of the fact that there are six of us fighting together.  The kids may not own this the way Trish and I can, but they are bearing loads of their own.  Overall, I am so impressed with them and their ability to navigate this time, thanks largely to people who have come alongside them.  They are doing well under far-from-ideal circumstances–with Trish and I taking turns in LA and seeing a different arrangement caretakers after school.  On more than one occasion, each of them has said they wished life was “normal again”.  The way they tend to display their stress is in feeling emotion out of proportion to the circumstance–a small disappointment becomes a tantrum; minor anger becomes a tirade.

About a month ago Trish and I realized that as important as it is for us to be with Rudy in the CTICU, it’s just as important for us to be in Goleta with Wilson, Max and Olivia.  I can’t even begin to thank everyone who has paid special attention to our kids in the midst of this.  In addition to praying that Max’s wish will come true, I also pray that he, Wilson and Olivia will emerge intact from the battle.  In meeting with a friend this week, he stressed the importance of making sure that they know that we would just as quickly drop everything for them as we are doing for Rudy–and that might mean giving them attention at Rudy’s expense.  Challenging to do, but Rudy is being watched closely and prayed for by hundreds whether we’re there or not.  So in the upcoming week, we’re intent on making sure that our Christmas, unique as it may be this year, will include times of uninterrupted focus on these three super kids.

Working to Gain Balance Again

Well, our little fighter looks like he spent the day in the ring!  Rudy has had a very full day and looks pretty pale and beat up but he’s holding steady.  The challenge today has been to find his balance again…his heart rate and blood pressure have been high and, at times, his sats have been low.  Anytime he has a procedure it takes a while to fine-tune the meds just right so everything works together.  He also has had a fever off and on which Dr. Rick described as a post-op fever…most likely caused by the inflammation in the chest cavity produced during the pleurodesis.  Although the procedure itself is relatively minor, the recovery is actually quite painful.  Rudy will be monitored closely for pain the next 48 hours as he has many sources of pain…his chest cavity, the incision on his side from today’s surgery, the sutures on each foot from Tuesday’s lymphangiogram attempt, and the new picc line they put in his right arm today because the line in his groin fell out after surgery!  I normally have to leave the room when they put picc lines in but today nurse practitioner Anita let me stay if I wore a hair net and mask…I was glad I could stay with Rudy.

Nurse Trish?
Nurse Trish?

As we wait to see whether or not the pleurodesis was effective, we would appreciate your prayers for Rudy’s comfort and the team’s ability to manage his pain the next couple of days.  He deserves a long rest and we pray he does so with as little discomfort as possible.  There hasn’t been any discussion about starting his formula feeds again and I imagine they’ll wait a day or two on that.  Rolf will make his way down tomorrow and stay with Rudy over the weekend…hopefully they’ll both rest comfortably in preparation for a full holiday week next week!  I’ll head home tomorrow to be with the kids and do last minute Christmas prep!  Our whole family will return to L.A. on Tuesday to spend Christmas with Rudy!  How is it that Christmas is only 1 week away?  Blessings to you all…

Safe and Sound

Rudy is back.  Once again, he was a real trooper and, I think,  is glad to be back in his room safe and sound (I wonder how many guardian angels have been deployed for Rudy over the past 11 weeks?).  Nurses Sara and Cheryl have been getting him settled back in with a fresh diaper (they always bring him back from OR diaperless) and fresh blankets so he is looking cozy warm now.  Dr. Brian said all went as he expected.  He looked for any obvious leakage and couldn’t pinpoint anything specific so he conducted the pleurodesis on the right side.  It appeared that there was some drainage coming from the left side out the right chest tube which means that once the right pleural cavity is closed off, fluid could start to collect on the left side requiring a pleurodesis procedure on the left side as well but we’ll have to wait and see.  “Why not do both sides at once” you ask?  Well, I understand that you wouldn’t ever do both sides simultaneously in case there are complications – you’d need the support of the other lung.  So, we’ll relax and see what transpires the next couple of days.  Rudy is doing well right now…stable and sleeping.  Thank you, dear ones, for your prayers for him today!

On return from OR
On return from OR

 

Ah...much better!
Ah...much better!

Happy 11-week Birthday!

precious boyIt has been a cold, rainy, blustery day here in west L.A. so there hasn’t been much motivation to leave Rudy’s warm room.  Rudy’s assignment was to rest, rest, rest today in order to recover from yesterday’s procedure and in preparation for tomorrow’s surgery …he started battling a high heart rate off and on last night and that continued all day today accompanied by red-faced tantrums and general discomfort so he has kept nurse Amy on her toes by setting off his monitor alarm practically every time she sat down to do her charting.  Hopefully he’ll be able to sleep well tonight (I know nurse Amy will!).  He’s number two in the OR tomorrow so he’ll be transported downstairs late morning/early afternoon.  It seems to me that it is taking him longer and longer to recover from his “procedures” so I’m praying tomorrow’s pleurodesis will do the trick for many reasons.  Dr. Brian will enter Rudy’s side, irritate or “rough up” the lung and chest cavity lining creating scar tissue so they will fuse together and seal off the pleural cavity.  It could take the fluid up to 4 days to stop draining so we’ll have some more waiting to do over the weekend.  While he’s in there, Dr. Brian will do some other things to, hopefully, increase our odds of success.  The team stopped Rudy’s feeds the night before last and although it seemed his stomach was softer and ready for formula again today they decided not to start the feeds back up again until after tomorrow’s surgery…maybe the extra rest for his stomach will do him some good and make the next attempt at feeding stick!!

Happy 11-week birthday Rudy!  You’re a pro-fighter, little man…you deserve a trip to Disneyland!!