A Day to be Grateful!

Wow!  I can’t even begin to express how grateful I am for all the love and best wishes sent my way today.  I’m totally overwhelmed by the number of phone messages, texts, emails, Facebook messages, blog comments, cards and gifts from friends and family near and far not to mention all the wonderful face-to-face well wishes from the staff at the hospital!  I may not be able to return everyone’s greetings but you must know that I received them all and deeply appreciate every one!!!  Thank you…thank you!  I’m so grateful

There were a number of things that made today special…it started out with Rudy and is ending with the others all cozy on the couch.  In the midst of all the activity I was honored to visit our old neighbor in the CTICU.  Rolf and I were touched daily by this precious little girl who fought so hard in the room next to Rudy’s  for the past 7 weeks.  We saw the dedication of a loving foster family and the CTICU staff that filled her life with love and tenderness.  Her precious life on earth ended today and as I walked back to Rudy’s room after saying “goodbye”,  I felt so honored to have witnessed this little life…she deeply touched the lives that came in contact with her – I’m so glad I was one of them.  I spent the rest of the morning holding Rudy – tight – we looked at each other for a bit until he feel fast asleep.  I was so grateful

OT Nichole came for a little therapy and Nurses Barbara and Missi prepared him for some exercises off the vent completely!  The weaning began early this afternoon with an hour-long stint with the trach collar and he tolerated it well…another one hour stint was scheduled for this evening and so on!!!  He’s doing great.  Rolf and Max will head down to L.A. tomorrow in time for the first attempt at feeds through the g-tube!  Of course, we’re very anxious to see how it goes.

For now, though, our focus is on Wilson, Max and Olivia as we enjoy a rare movie night together as a family.  Freaky Friday is tonight’s movie choice…come to think of it, today was a bit “freaky” but, on many levels, a true gift of grace and love! 

a day I was so happy to share with Rudy...
a day I was so happy to share with Rudy...

 

 

 

...and the others at home!
...and the others at home!
P.S.   Thanks for the gift of a good laugh today Rolf!  Speaking of the 80s, don’t be surprised if the classic college video production of “Rolf:  Man, Myth or Mongoloid” gets mysteriously distributed worldwide!!!!

A Birthday Makeover!!!!

While it’s not the celebration we envisioned (but then neither have most holidays of late), our family sure is excited about Trish’s birthday.  As Trish does a pretty good job keeping vanity at bay, she didn’t let on that one of the highlights this week was a birthday makeover.  There’s a kind organization that comes into the hospital to take portraits of kids and their mommies, so Trish got to join in the fun!  The final result is stunning!

trish80s

She told me that our plans for the weekend have changed.  Tonight she wants to sit on her bed, eat Pop Rocks and gaze longingly at her Karate Kid poster while listening to Sheena Easton 8 tracks.  She’ll need to get some rest because she was a troublemaker and has to spend all Saturday in the school library with Emilio, Molly, Ally, Judd and Anthony so that they can achieve teenage enlightenment and discover that they, as middle class suburban white kids, are remarkably all the same (who would have guessed?)

OK, that wasn’t the picture.  Here’s the one from this week’s makeover:

trishmakeover

About three times the years, but ten times the HOT!  My birthday princess is looking fine!

While I’m posting and boasting, Wilson had a great week as well representing La Patera Elementary at the County Spelling Bee.  His goal was to make it past the first round as he missed the cut last year, and he was successful.  About 150 started and he finished somewhere among the final 20.  As we didn’t have a lot of time to study, our strategy included preparation in some of the terms that have become part of our family vernacular but would likely elude the common elementary speller.  Unfortunately the gambit failed as “hypoplastic”, “cardiothoracic”, “pleurodesis”, and “fundoplication” were not on the word list.  Too bad, Wilson was going to nail those!

wilsonspellingbee

Good Morning

Yesterday was so lazy that I forgot to post an update so here’s an early morning recap for you…

Rudy is doing really well post-op…he continued to get some pain meds yesterday and had one pretty fussy spell in the a.m. but was awake most of the afternoon – alert and calm.  So nice to see!!!!  Everything was cancelled yesterday…no OT, PT or RTs.  The pediatric surgical team came in to check Rudy’s in incision and dressings.  The only real action for Rudy yesterday was various nurse friends stopping in to say “hi” and the constant (mind ripping out) chime of the vent because of Rudy’s trach leak.  I think we first mentioned this a couple of weeks ago so keep in mind this has been going on FOR A COUPLE OF WEEKS.  With all the amazing, miraculous things they do in this unit, being able to adjust the vent to accomodate the trach leak isn’t one of them!!  Ha Ha

So, today the plan is to start taking baby steps…they’ve come down a little on Rudy’s oxygen support and will attempt short sessions off the vent today.  He’ll get a little exercise today and I’ll get to hold him a bit before I head home to SB for the weekend.  They’ve already begun administering some meds through the g-tube and will begin feeds through it tomorrow!!!!  Of course, they will start VERY slowly but  it will be great to get started.  Rolf and Max will be here over the weekend to cheer Rudy on in the feeding game along with the staff so he’ll have great support!!!  I’ll share more later…Nurse Jennifer just brought me a beautiful, homemade birthday cake!!!  It’s time for a little “birthday cake” breakfast  🙂

Happy 21-Week Birthday

One last "tube in the face" picture
One last "tube in the face" picture
Post Op
Post Op
Post Op Nap...
Post Op Nap...
His body may look war-torn but his face is perfect!!! Happy 21-weeks little man...
His body may look war-torn but his face is perfect!!! Happy 21-weeks little man...
I think these pics sum up our day pretty well…Rudy remains sleepy and calm with the help of some pretty heavy doses of pain meds.  He woke up a few times for a quick photo op here and there, would wiggle and squirm uncomfortably for a few minutes and then fall back to sleep.  The team has been quite attentive checking in on him regularly.  Everyone from Dr. Brian to Dr. Rick to the GI specialists to the peds surgeons have all warned us that the introduction to feeds will be veeeerrrrrryyyyy slow.  The process may require a couple of starts and stops and then starts again…it may require going up even more on the vent support before it can be dialed back down, etc.  I appreciate the warning and the reminder that such “hiccups” shouldn’t be seen as setbacks but as part of the process.  It’s a relief to have this surgery behind us making this next phase of waiting a little easier for now.  Once again, Rudy has proven himself a tough nut to crack!!!  Thank you for covering him in prayer today…and eveyday!

He’s Back…again!

The precious one is back safe from the OR.  The pediatric surgical team member who accompanied Rudy back from surgery said he did great…was well-behaved (apparently Rudy has quite the reputation for being a trouble-maker) and the procedures went as planned.  He has a bandaged incision going from the bottom of his open heart scar down to right above his belly button…so at least it’s all very neat and linear!  🙂  The feeding tube was placed  just to the left of his scar and extends out about 8 inches.  Right now, of course, he is knocked out (dreaming about something) and resting.  We’ll have to wait a day or two to start the feeds into his stomach through the g tube so although the surgery went well, we won’t know for sure if all the plumbing will work properly for a few days.  He’s back to having no tubes in his nose…no tubes in his mouth…and looking very handsome!  I’ll post pics later today!!!  God is good…all the time.  Love to you all from Rudy’s room.

The Call to Surgery

I woke up in a daze and haven’t talked to anyone in charge yet but the night nurse said Rudy was scheduled for 8:30 am and would transport to the OR at 8am!!  He should be leaving in just a few minutes!  I’m confident Rudy will be safe through surgery but there is a pretty heavy cloud of doubt hanging over my heart this morning that the “fix” to his stomach will actually get him past the feeding challenges…my doubt isn’t based on anything specific other than past disappointments probably… 

Years ago, Rolf and I attended this little storefront church in South Central L.A. where the African American pastor would preach his entire sermon in English and then AGAIN in Spanish!  It made for a long church service but he was so amazing and I remember one service where he repeated “nunca dura” (not sure if I’m remembering my Spanish correctly but you get the point) over and over again.  “No (never, none) doubt”…”No doubt”…he passionately proclaimed.  Funny how, 15 years later, this simple message from an inner city storefront preacher comes to mind as a helpful reminder – God is in control no matter the outcome. 

I’ll let you know when he is back to the room and settled!  Thank you for your loving prayers…

“Rock”-a-bye Baby…

Big brothers Wilson and Max may have the "rock star" moves but Rudy has the look!
Big brothers Wilson and Max may have the "rock star" moves but Rudy has the look!

Rudy started out the day agitated, feverish and breathing hard but he ended up sleeping a good bit of the afternoon in my lap so the day of rest and cuddles I had hoped for ended up coming to pass.  There really isn’t much to report…Rudy made another attempt off the vent and on the trach collar this afternoon but only tolerated it for about 15 minutes.  It’s a bit discouraging to have to make up ground in the weaning process again but I shouldn’t be surprised.  It seems that for every day the next surgery is delayed we lose a few days.  My prayer tonight is that his surgery WILL happen tomorrow, will be successful and will allow Rudy to fly through the next milestone of feeding and digesting!!!  It’s starting to feel critical that we get him home and settled before his next open heart surgery which is why impatience is starting to set in, I think.  Oh, may I continue to trust in God’s timing and may Rudy’s body continue to heal!!!  Bless you friends…