We’re starting the New Year off with a first ever trach stoma infection!  Thankfully we caught it early but it still looks uncomfortable.  Two doctor visits yesterday and a couple of antibioic doses later and he’s doing fine but it has been a long weekend.  The first couple of days, we watched the stoma closely but it was hard to determine if the area was red because Rudy kept messing with his trach or if he was messing with his trach because the area was irritated. 

‘Just when his care starts to feel routine, something happens to humble us.  A stoma infection involves much more suctioning than usual and multiple cleanings throughout the day to keep the area as clean and dry as possible…we were managing it great until Sunday night when Rudy had a rough night sleep.  Because he was restless and had some irregular breathing patterns because of congestion, I had gotten up to check on him a few times and he was fine.  At one point, though, we heard the familiar vibration of the stoma that happens when the trach is out!  Rolf and I shot out of bed, sanitized our hands and pulled what we needed right away to reinsert the trach…trach in…tie secured…no problem.  We’re back in bed and Rudy is settled and about an hour later I asked Rolf  “Does Rudy’s breathing seem heavy to you?” to which Rolf sleepily replied “No different than the past few days”.  At 6am I heard Max come into our room and check on Rudy and then he started to mess with him.   Irritated, I told Max not to wake him up (“we’ve been up all night!!”).  “But Mom, his oxygen mask isn’t on!”  Oh, good grief, Rolf and I walked away from him without securing his oxygen…no wonder he was breathing heavy!  Arrrrrrgh!  Thankfully he was sat-ing within his normal range yesterday and he was fine but STILL!!!!

This week’s “episode”, thankfully, didn’t turn into a BIG deal but it was a reminder to us to stay alert…Rudy’s care isn’t hard work but it is constant…no room for slacking or sleep deprivation!  Ha Ha  We’re praying for Rudy’s quick recovery and renewed strength ’cause we have a very special wedding to go to this weekend!  We’ll post more about that later!  🙂

As is our family tradition, we got up early to watch the 122nd Rose Parade this morning but 7:30am came extra early as the kids somehow talked us into staying up to ring in the new year with the rest of the West Coast.  I’m glad we did because although Rudy was fast asleep when we celebrated at 9pm with all the easterners, he was wide awake at midnight…quite possibly awakened by the Wii Sing It competition going on as we waited for the ball to drop a second time.  🙂

And so, here we are at the start of another new year.  It struck me last night that I don’t have any new year resolutions…’haven’t even thought about what I could be doing better or differently.  I suppose it would be a good exercise to give some thought to but, to be honest, I kind of feel like I’ll be doing good just to keep getting out of bed each morning in 2011.  “Baby steps” seem to remain our M.O. as the disappointments in Rudy’s journey this fall remain very heavy on our hearts.   The holidays were a wierd mix of joy and anxiety for me personally…so, I rally this morning, renew my prayers for grace & peace for all of us and strength & growth for Rudy in 2011 and commit to continue to live & love one day at a time and, right now, that feels like enough. 

We trust you’re enjoying the lull between holidays too!  Joy to all!!

…but I’m not sure Rudy is too keen on his existence!

Not even the big sibs were able to comfort Rudy…Santa wasn’t threatening until we made Rudy sit on his lap!  Ha   (Bless his heart) 

     Although Rolf and I continue to battle the temptation to dwell on the heartache of recent disappointments where Rudy is concerned, we have had a ton of fun distractions including this little trip to see Santa and Oma’s visit this week.  I even managed to pull off a jewelry open house at the last minute yesterday and enjoyed a nice turn out…connecting with friends I haven’t seen for a while.   The hustle & bustle continues this next week with another GVJH band concert, caroling with the Girl Scouts, Rescue Mission staff party, visits with “out-of-town” friends and more…treasuring it all. 

Ugh,  just when we thought we were on the verge of some real progress, we got the disappointing news today that Rudy did NOT pass the sleep study!  Dr. Pornchai (UCLA Pulmonologist) called this afternoon with the news.  Apparently, there was no question about it…shortly after plugging the trach while sleeping, his heartrate spiked and his breathing became labored.  (Where was I?)  It’s clear he is still dependent on the trach and so we need to stop the decannulation process and wait to see Dr. Pornchai again at our next appointment in late January.  We were pretty convinced he was ready to pull the darn thing so today’s news sure feels like a setback.  What’s most depressing is the thought of having to reorder trach supplies with CrApria…I’ll have to make that call tomorrow. 

We have a couple of questions for Dr. Shapiro (UCLA ENT) and will try to make contact with her tomorrow as well.  Now that decannulation is off the table, I guess we’ll move on to plan C (plan A being “heart surgery”, plan B being “decannulation”…) which is working on Rudy’ s food aversion and getting him to eat real food.  This is a long, tedious process but the next “major milestone” we’ve been waiting to conquer.  Though minor compared to heart surgery or decannulaton,  the pressure is on at this point because if he doesn’t learn to eat and eventually eliminate the need for the feeding tube, I think I’ll start to pull my hair out or it may just start falling out on its own.  As seems to be our MO this fall, our challenge in the coming weeks will be to stay focused and not dwell in the disappointment.  We’ll keep you posted…As always, thank you for praying!

No, we didn’t see the new Walt Disney animated film this weekend (although we heard it was good) – we didn’t have time with all the Christmas prep going on at our house!  “Tangled”, however, did define a good bit of our activity…

Max managed a more efficient and quick job of the outdoor lights lining our roof (he’s becoming quite an expert at hanging outdoor lights!) and we finished trimming the tree today after church so Christmas is finally in full swing here in the Geyling household.  Our festive weekend started at the annual holiday parade downtown on Friday night.  Olivia participated in the parade with her Girl Scout troop and Wilson marched with his school band.  Max was home from school all week with a fever and was thrilled to get out of the house for a bit to watch his sibs in their parade debut.  Rudy wasn’t too keen on the whole experience – too many people and too many loud sirens from participating fire trucks and police cars – but he did like all the lights!!

We haven’t heard any news about the sleep study results.  Dr. Shapiro (UCLA ENT) and I talked on Monday. If Rudy did pass, it is unlikely we’ll pull the trach before the end of the year as she is booked solid.  So, we’ll wait patiently for things to unfold and enjoy the holidays while we wait.  There are a number of school activities and the Christmas Eve service to look forward to in addition to a weeklong pre-Christmas visit with Oma starting on Thursday!   We are holding our schedule loosely willing to jump into action if Dr. Shapiro should have a cancellation between now and New Years.  🙂  We’ll keep you posted.  Rudy sees Dr. Harake (SB Cardiologist) tomorrow for our last monthly appointment with him in 2010!  My, how time is rushing by…it makes my head spin sometimes.  🙂

Today is a quick pit stop in Santa Barbara for me and Rudy sandwiched between a family visit to San Diego over the holiday and tonight’s sleep study at Children’s Hospital L.A.  It’s a quick turnaround but we’re thankful for our fun getaway and for the slot in the sleep lab that can often be tough to schedule. 

Shortly after Rudy’s heart cath, when it was determined we would not be heading into heart surgery, we decided a family trip was in order!  It just so happened that Max and Olivia won tickets to Sea World for the whole family at the Heart Walk and a school fundraiser so we were already primed and eager for a visit to San Diego.  We were blessed to spend Thanksgiving day with dear old friends from my years in San Diego who also happen to be Rudy’s godparents and then we spent the day at Sea World on Friday – a really fun way to usher in the holiday season.  It was a huge effort for such a quick trip but it was refreshing and restorative on many levels. 

I’ll be sure to post an update when we return from L.A.  I’m not sure what to expect tonight but I’m sure it will all go fine…not eager to battle the holiday traffic down the coast this afternoon but I have a nice stack of Christmas CDs to pass the time.  Thank you for praying for a successful sleep test for Rudy, our safe return and a good start to the post-holiday work and school week for Rolf and the big kids…it’s hard to go back to the routine after all the fun!  Holiday blessings to you all!!!