Archive for June, 2010

Soon To Be Trach-free!?

June 30, 2010

Yesterday’s visit to UCLA for our regular check-in with Rudy’s pulmonologist took us back to that reality with Rudy that you wait and wait and wait to almost a standstill and then when things move, you feel like you’re running out of the gate in a sprint.  Yesterday’s consult was full of great news but I think Rolf and I both left with our heads spinning a bit.  Dr. Pornchai seemed pleased with Rudy’s progress…at 30 lbs 9.4 ounces, he remains in the 90th percentile for weight but has grown in height (32 inches) putting him just under the 50th percentile (up from 20th percentile in April).  Rudy’s still a chunk but at least he’s getting longer and growth in general is an indicator that his lungs and heart are working together. 

Although we won’t know for sure what is going on in his lungs until the heart cath in the fall, the fact that his oxygen sats are baselining a bit higher in the high 70s – low 80s…and even reached into the 90s (!) is another indicator that the lungs and heart are communicating!!!  Bottom line…it’s encouraging eventhough there isn’t alot of specific information yet. 

As a result, Dr. Pornchai recommended we decrease Rudy’s oxygen rate to 1 liter during the day and keep it at 5 liters at night and he reduced the dosage of one of Rudy’s respiratory meds but the most surprising recommendation was to pursue “decannulation” a.k.a. “pull the trach!!!!!”.   The trach has served two purposes…to help make it easier for Rudy to breath and to allow us a way to clear Rudy’s secretions for him.  Although Rudy has become less dependent on the trach for his breathing for a few months now, we’ve needed to suction him pretty regularly up until just a couple of weeks ago…now that the need for suctioning is decreasing, there’s less and less reason to keep the trach.  One would argue that since we are heading into another major surgery, it would be advantageous to keep the trach because it makes it easier to put Rudy on and off the ventilator (and much more comfortable for Rudy as opposed to being intubated).   This is true but the trach is also a potential source of infection that many on his team would like to eliminate before heading into surgery. 

It’s funny…Rolf and I remember feeling pretty devastated when Dr. Rick told us we had reached the point in Rudy’s care where the tracheostomy was necessary and now that we are presented with the recommendation to wean him from it, our first response is “Are you sure you want to do that?”…the trach has gone from something we feared to a safety net.  It is exciting, though.

It won’t happen right away…Dr. Pornchai wants to talk with Rudy’s cardiology team and get a “thumbs up” from them before we proceed…we also need to schedule a “bronchoscopy” to get a good look at the inside of his airways…a procedure we’ll need to schedule with his ENT at UCLA.  And finally, Dr. Pornchai wants to send us to Children’s Hospital Orange County for a sleep test where they will block the trach and observe Rudy overnight.  I imagine it will take time to get all this scheduled but the fact that we’re even talking about going in this direction is amazing.  It feels like all the progress we’ve been reporting in recent weeks is the fruit of this extended wait for the Glenn.

Of course, our visit to UCLA included a quick stop in the ICU to see the docs and nurses on duty…we also had our first batch of “Rudy Rolls” to drop off…we’ll see how helpful they are:

Handing off the Rudy Rolls to Nurse Jennifer, Dr. Leigh and Dr. Myke

Rudy can't resist going for Dr. Myke's nose...Dr. Leigh's is out of reach!

We can’t ever leave that unit without a deep sense of admiration and gratitude for the people who staff it.

Our special day concluded with an extra-special visit with new friends…Megan and her family have been faithful Rudy’s Beat followers since a mutual friend told them about Rudy at the start of his journey.  We have known about them and their commitment to pray for Rudy all these months but yesterday we had the opportunity to meet and what a sweet time it was.  Our mutual admiration and commitment to pray for each other’s family runs deep as Megan is in her own battle for survival after being diagnosed with an inoperable brain tumor.  Watching Megan and Rudy look at each other (both having very expressive eyes) was one of those “holy ground” moments for me.  Please join us in praying for Megan and her family as they navigate their journey with grace and faith.

New friends Megan and Rudy

Life is SO MUCH more than what we see in the here and now…everything about yesterday was a BIG reminder of that!!

‘Just Another Day Of Therapy

June 28, 2010

Rudy continues to have therapy at home twice a week and is pretty agreeable to all the activities Gwen prepares for him.  Of course, she has alot of extra hands to help out…you’d think the big kids would scatter to go watch t.v. in the other room or play outside but they genuinely want to participate in Rudy’s therapy and Gwen is sweet to encourage it as you can see in the video below:

Rudy is still getting used to the speaking valve but definitely becoming more confident…

We head down to UCLA tomorrow for an appointment with Dr. Pornchai Tirakitsoontorn (Pulmonologist).  We haven’t seen him since April so I’m eager to touch base with him and hear how he thinks Rudy is doing.  We’ll also make a quick stop in the CTICU to drop off our first batch of “Rudy Rolls“.  It will be a long day in L.A. but I’m anticipating it will be an encouraging visit.  We’ll update later in the week…

Father’s Day 2010

June 23, 2010

 

Father’s Day was a special day for a couple of reasons…not only did we celebrate a really great dad but we also took Rudy to his first movie and not just ANY movie but a drive-in double feature!!!  For the record, Rudy’s first movie experience included Toy Story 3 and the new Karate Kid movie.  Toy Story 3 was so cute and had an ending that made me cry!  I can’t comment on The Karate Kid as I fell asleep…in fact, I think Wilson was the only one who made it through the whole thing!! Ha Ha  We were crazy partiers staying out until 1:30am (and we all paid for it the next day) but it was fun and memorable.  Rudy was a star.  He beamed and did his “happy kick”  throughout all the pre-show activity and fell asleep in his Daddy’s arms pretty soon after the first movie started…right on que.   Although he slept through most of the evening, I think he was thrilled knowing he was part of the party…

Tailgate movie party complete with snack table and presents!

Rudy's view of the screen....

Rudy likes the drive-in scene!

Here’s to another “first” in Rudy’s journey…

Odds n’ Ends

June 19, 2010
So, I sat down with the kids the day after school let out for the summer and proposed a different kind of schedule for our summer at home…a schedule that included daily projects that are more involved than the normal household chores.   A shift not so much to instill a greater level of discipline and responsibility in the kids but more because I REALLY need their help!!!  Of course, my grand plan was met with the requisite chorus of groans and “but Mom!” but everyone rose to the occasion and we accomplished quite a bit this week.  It all started with a team effort to dig up a big stump and clear away a bunch of rocks in the front.  The garbage collectors arrived to pick up our trash as the kids worked and one of them yelled out “You’re working as hard as we are!  Summer should be all about playing”  (Thanks Garbage Man!) to which Wilson replied,  “Well, we’re trying to balance it out a bit this summer.” (Well put Wil!) 
As the week progressed, we  included Rudy in the projects as much as possible…he makes a great supervisor!  Shamefully, the family car hadn’t been washed in I don’t know how many weeks so washing the Sienna inside and out became one of the projects…I gave the kids the bin of car wash supplies and let them have at it!  It was amazing…I came back a while later and it was all done AND done well! 
Rudy supervising the “chore” of the day!

 

This is fun but...

...all this work makes me tired!

 Rudy continued his progress this week…for a little over a month, he has been rolling over from his tummy to his back and becoming quite the expert at it.  He hasn’t, however, rolled from his back onto his tummy (not much motivation there, I guess) but he has been sleeping on his extreme side more and more.  As he fell asleep earlier this week, he ended up making that final rotation onto his stomach and slept comfortably for 30 minutes until we transitioned him to his crib!  Out of curiosity, Rolf checked his oxygen sats while he was asleep on his stomach and we were SHOCKED to see it register in the 90s!!!  Something we’ve not seen before…’not quite sure what it means but we claimed it as a good sign!

Rudy's first "tummy nap"...

...coincides with the first time his O2 sats EVER registered in the 90s...the low heart rate is his sleeping heart rate.

 The project I’m most excited is now crossed off the to do list is the reorganization of Max’s room to accommodate Rudy when he’s ready to move in.  Max and I literally pulled EVERYTHING out of his room, purged a bunch of old toys, did a little painting, washed down all the walls, Rolf assembled the new bunk bed unit and we got everything moved back in on Friday(phew!).  Of course, a major overhaul like this unearths all kinds of treasures that get rediscovered and provide hours of entertainment!  Max’s Jack Sparrow hat was one of the treasures that ended up on Rudy but he didn’t seem to mind…

Cap'n Jack

Nope, he can't quite pull off "pirate"!!

I treasured alot this week in the midst of the mundane acts of home management…especially watching the kids organize themselves and work together as a team, all the creative fun and Rudy’s smile as he watched and took it all in!  Happy Weekend Everybody!

First Week of Summer!

June 13, 2010

Like a rocket, the first week of summer sped by in warp speed!  It started off with a fun bang as cousin Heather flew in last Sunday from Alabama for a few days of SB fun.  Unfortunately, the typical “June gloom” fog and overcast skies didn’t burn off until late in the day most of the week so we didn’t have the best weather while she was here but that didn’t stop us from enjoying our time together.  We managed to squeeze in a picnic at the beach, a visit to the old mission, a tour and dinner at the rescue mission, a walk on Stearn’s Warf and a few outings for take-out in the few days she was here…a GREAT start to summer

June gloom beach outing

 

A sunnier stop on Stearn's Wharf

 

Rudy's encounter with a crab thanks to a local fisherman!

 

...and a fish too!

 

Rudy kept his distance from the pelican!

 

Cousin Heather is fun!

 

In the midst of all the fun, Rudy had his monthly cardiology appt. with Dr. Harake last week as well.  All remains stable with no real change in the heart’s condition!  We are grateful as this means Rudy’s heart is continuing to give his lungs time to regenerate and heal.  Because of a goodwill trip to Peru that a couple of Rudy’s doctors will be taking in late September, the plan is to schedule Rudy’s next heart cath/angioplasty in late October.  This is GREAT news for Rolf as the Rescue Mission’s big annual fundraiser is going to be on October 2nd so any plan to proceed with Rudy’s heart surgery will be safely past this crucial event!  Our next big appointment will be on June 29th with the pulmonologist at UCLA allowing us an opportunity to check in with the folks down south.  All is good and  we continue to look forward to a (medically) uneventful summer!!!

Impulse Buy

June 6, 2010

Our summer offically started last Thursday at 11:40am when I made the rounds to the two schools to pick up Wilson, Max and Olivia!  What a great feeling it is to wake up with no demands on our time and no schedule to keep but the one we make for ourselves.  Of course summer brings it’s own set of challenges finding that perfect blend of  “structure” and “fun” as well as that perfect mix of “patience” and “grace” with everyone home…all day, every day.   No complaints here, though!!!  (At least not on Day 3 of summer vacation!)  🙂

All three  kids ended the school year with affirming words from their teachers and good marks on their report cards…another year under their belts and we’re so grateful for the supportive teachers with whom God surrounded them this year and the success they achieved with very little help from me and Rolf!! 

The kids and I ran a couple of errands after I picked them up on Thursday and we stopped for the traditional “end of the school year” treat…this year it was a Lego for Max, and new books for Wilson and Olivia.  While we shopped, I stumbled on the cutest Fisher Price riding toy I have ever seen…a race car with all the bells and whistles and engine sounds one could hope for…I HAD to buy it for Rudy.  It was a total impulse buy (no special occasion to justify the purchase, too expensive,  no room for another big toy in our house, etc, etc, etc) but I couldn’t resist.  Rudy’s not quite ready for it but, oh, is he ever cute:

But this alone made the purchase TOTALLY worth it…check out the smile on Rudy’s face:

Hopefully this is just a small glimpse of the fun we’ll have this summer.  Now, I don’t mean to completely monopolize your time with boring videos of my family but I just had to include this little singing session video.  Watch carefully!  Rudy clearly knows what’s going on and his mind is engaged in the happy business of “singing”!  You can bet we’ll be doing alot more singing this summer too…Ha Ha

Happy 20 months!

June 1, 2010

Rudy’s monthly milestone never loses its significance but I admit it didn’t dawn on me that it was June 1st until the day was almost over!  Rolf and I just tried to wake him up for the ceremonial photo op but he didn’t have the energy to cooperate…

Picture time!

 

Not gonna happen!

 Oh well, we did manage to capture this little gem of a photo earlier this evening with friends Cady and Thomas so we did get to commemorate the day with a special pic!  20 months old today, Rudy,…Well done little man!

Happy 20 months Rudy! June 1, 2010

 Rudy made progress in sitting over the long, holiday weekend…he tolerated sitting in a shopping cart for a quick trip through Michael’s and then again through Bed, Bath & Beyond.  Earlier today he made it through a longer stretch during a Costco run!  It’s a wobbly sitting session but he is learning to hold onto the bar in front and catch himself!  Once again, well done little man!!

Baby steps...