from our family to yours!!!

It’s been a great Christmas so far here in our unique environs.  Rudy has been stable.  We were glad to find out that what fluid is coming from the left chest tube is only 8% chylous so perhaps not another issue of chylothorax.  He’s breathing much better since the fluid came off, so Dr. Robert might just start to slowly wean the ventilator tonight as his nutrition looks good.  The kids discovered there had been a visitor overnight, so the day started with presents and fun.  Since then, the day has been full: fun with Nurse Kelly, Nurse Aliza, Drs. Abel and Robert; visits from friends, firefighters and (yet another) Santa.  Things are just getting started as Trish is set to go pick up Grandma and Grandpa at LAX and, after they have a chance to visit with Rudy, we’ll all head back home for a couple of days enjoying a lazy Christmas at home.

I’m not sure any more words could do our Christmas celebration justice…so here is a pictorial diary of the past couple of days…

What would a Christmas Eve in the CTICU be without a traditional game of “udderball”.  All you need is a surgical glove, an extension cord and an empty room with a very expensive ICU rig to serve as stantions. 

Hot Chocolate, the Christmas Story and Christmas Carols at Rudy’s bedside – (Christmas Eve 2008)

blessings abound!  As you can tell from Rolf’s frequent updates, the past couple of days have been emotionally draining and the threat of dialysis today was a real discouragement to me so, I admit, I haven’t felt like following up on Rolf’s “teaser” yesterday but I realize that it’s important for you to hear of the blessings as well as the concerns…

It’s funny how extremely focused I am when I’m at the hospital with Rudy and how very UNfocused I get when I come home.  I’ve kind of been walking in circles around the house today unable to focus on any of the “to dos” and was pleasantly surprised by a friend who took the initiative to come over and take me and Olivia to lunch while the boys were at a friend’s house playing video games…this past week with Rudy was so full with so much to process and I didn’t fully realize the impact until I got home and let down a bit…time with a friend was a warmly welcomed distraction – thanks Lisa!

The good news this evening is that Rudy’s kidney function has picked up.  Rolf has been reporting progress to me regularly.  He’s done at least 3ccs every hour (the target set by Dr. Abel) and did twice that during the 7pm hour.  Some of the lab numbers are elevated but nowhere near the danger levels.  So, thanks for praying and please continue.  The chest tubes have been dry and we want them to stay that way, so that’s encouraging progress.  Hopefully the pee tube will continue to see lots of acti0n overnight so we can truly feel like we’re moving forward.

Yesterday was another one of those surreal days that included drama, anquish, tears of concern, tears of joy AND fun all wrapped into one!  It all started when I returned from breakfast to find nurses Sara and Heather and doctor Andy S. in Rudy’s room mixing a strange concoction at Rudy’s bedside.  When I greeted them with a cheerful “hello”, they all looked up with wide eyes and a collective sigh of disappointment.  Dr. Andy quickly excused himself and the gals started to laugh.  “What’s going on?”, I said.  “Oh, you came back too soon!”, they replied.  I took a closer look and realized the strange concoction was plaster!  They were attempting to get Rudy’s hand and footprint for me as a surprise…come to find out later, nurse Gladys was involved in the plan as well!  I mentioned to nurse Sara a few days earlier that I wished I had had the presence of mind to ask for a foot print of Rudy when he was born.  She remembered and found a kit to do just that when she was out shopping.  I was so touched by their thoughfulness, teared up and then quickly offered to join in and help.  Unfortunately, the plaster project ended up being a bust but just as we were aborting the project, social worker Erin stopped to see what was going on.  When we explained how the plaster wasn’t working to get the prints, she told us to wait just a minute and came back with some molding clay her department uses  for just such a purpose!  With the help of nurse Sara holding the clay and with Erin’s help unclenching Rudy’s little hand, we got the prints!  The prints are precious but I think I cherish more the visual of all these sweet gals working so hard together to fulfill a mom’s random request – thanks Sara, Heather and Erin!

‘Just another crazy day in LA – LA Land. 

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.

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…

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!

It 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!!

As Rolf posted earlier, the attempt at the lymphangiogram was aborted after several attempts to find a vessel big enough…Nurse Jenny described how the doctor and his tech were working with vessels just a tad bit bigger than a strand of hair!!!  Amazing…    It’s disappointing but not just for us…everyone involved in getting this set up is disappointed and there is comfort in knowing we’re not alone.  Rudy has rested comfortably since his return to the room, opening his eyes for a little bit and then falling back into a deep sleep.  We’ll hunker-down again and wait for the Pleurodesis to take place on Thursday…Rudy has the #2 slot on the list for that day.  Dr. Brian will conduct the procedure through an incision on Rudy’s side…essentially going in and “roughing up” the lung and chest wall so the two will fuse together eliminating the pleural cavity.  If it does succeed at getting rid of this fluid then the process of weaning Rudy from the vent could begin next week.  If it doesn’t work then we’ll have to go back to waiting for the fluid to stop on it’s own.  Dr. Brian described the pleurodesis as the last surgical “ditch effort” in addressing this issue.  The risks involved in the procedure itself are minimal…the threat of another disappointment – pretty high BUT, no matter what happens, I’m commited to getting up again, readjusting expectations again and moving forward even if it’s ever-so-slowly!  I’m starting to feel a bit like Scarlett O’Hara no matter the disappointments…”afterall, tomorrow is another day”.

On a sweet note, Rudy has gotten alot of special attention today, especially now that he is sporting a brand new hospital gown made ,with love, by Oma.  I think Oma has tapped into a new, unexplored market!  His little gown is complete with special velcro closures all over to accomodate his lines and tubes – so precious! 

Your steadfastness in praying is an amazing blessing…thank you for your diligence and faith!  I am humbled by the sacrifices made by so many on Rudy’s behalf.  Thank you dear friends!!!!!!!