…but I’m not sure Rudy is too keen on his existence!
First introductions!Seems nice enough...A "heart-to-heart" with Santa...Yippy, a candy cane!Wait a minute!!!Noooooooooooo!
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.
Thanks for all the notes and comments. At some point we’ll have to get on a longer “how we’re feeling/what we’re thinking” post in light of the recent developments, but in the meantime the holiday season gives us lots of things to enjoy. We’ve got some posts coming on the fun we’re having.
I appreciated a Rudy’s Beat fan (thanks, Christie!) who forwarded me this NPR link about a long-term HLHS survivor. If one hero isn’t enough, you’ll probably recognize a second, Dr. Brian, who gets interviewed below. The impasse we’re at with Rudy’s condition can give rise to all kinds of questions in our heads. I’m glad one of them is not whether we’ve got the best team.
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…
Oops! Our prelit tree lights went kaputt this year...it took Rolf all afternoon/evening to rewrap it with new lights! Rudy watched with great curiosity...
Rudy managed to roll his way around the living room a few times making quite a mess of his oxygen tube.
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!!
Our little snowflake!
Our little drummer boy!
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. 🙂
Unpacking a "Rudy-safe" nativity scene!
"All done!"
We wish you a bright and festive Christmas Season!!
"Silent Night, Holy Night...""All is calm, all is bright..""Sleep in heavenly peace? Sleep in heavenly peace..."
Well, I’m not sure how he did it, but Rudy managed to fall asleep last night after getting “plugged in” from every direction!! We arrived at the Sleep Lab at CHLA for our 9pm admit and although he put up a bit of a fight when the tech was adhering all the probes, he drifted off to sleep a little after 10pm. I drifted in and out of sleep and got up to suction Rudy twice during the night. By 5:30am, the study was done and we were released at 6am. Unfortunately, the tech couldn’t tell me how he did – we have to wait for the doctor to give us the results so hopefully we’ll hear from Dr Pornchai T. or Dr. Nina soon. Nonetheless, step two of the process is over and we will await further instructions on what to do next. In the meantime we have a full week ahead of a variety of commitments and activities AND Wilson & Max are home sick. (Good grief!) ‘Praying now for health in the Geyling household.
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.
Shamu!Rudy's view of Shamu in action!Rudy's TV celebrity siting!Nothing says "Sea World" like Shamu-shaped pretzels!!Watching big sibs ice skate- Fun, Fun!Move over Evan Lysacek, here come the Geyling brothers!Happy Belated Thanksgiving Everyone!
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!!!
In this “post cath” season of uncertainty and life in limbo, I mistakingly thought things would slow down a bit in regards to Rudy’s care. Although we’re not heading into the intensity of heart surgery and a long hospital recovery, life has definitely revved up for us with the multi-step process and logistics of weaning Rudy off the trach – a process known as “decannulation”. Last week’s procedure to remove scar tissue in Rudy’s airway was the first step. We made it home late Wednesday night and it took a few days for us to settle back in and catch up on stuff at home. Rudy was feeling and acting like himself by Monday and we’ve had a good week so far.
Waiting for discharge 11-10-10
The next step in the process is a sleep study and we are blessed to already have it scheduled at Children’s Hospital LA (UCLA doesn’t have a pediatric sleep lab in which to conduct the study) Sunday November 28 – Monday November 29!! This is sooner than we expected so we’re pleased. In preparation for the sleep study, Dr. Shapiro (UCLA ENT) gave us a cap for Rudy’s trach so he can practice breathing completely through his mouth/nose. Because Rudy has been doing so well with the speaking valve (which allows him to inhale through the trach but forces him to exhale through his mouth) the adjustment to being capped has been a smooth one. What’s not been so smooth, as we predicted, is the switch to the nasal cannula. Boy, he is quick to get his fingers underneath the cannula and pull it off!! When he is capped and, ultimately, when the trach is pulled, he will need to get his oxygen through his nose. A little bittersweet for me because I’ve LOVED having his face free of tubes and tape since he got the trach in February 2009. When he came back from the OR that day, I remember how my heart jumped when I saw his face “tube-free” for the first time since he was born. 🙂
The trick to making the nasal cannula adjustment, we’re finding, is DISTRACTION which is where the big kids come in. Rudy’s sprints with the cap have involved high energy activity with alot of attention from the big sibs (see video below) – good for the body and soul!!! 🙂 So, we will continue with the practice sprints here at home, get signed off at the sleep study and then head back down to UCLA for a couple of days of observation when Dr. Shapiro actually pulls the trach (do we dare hope before Christmas?!). We expect Rudy will do great whenever it happens!
Emotionally, we’re still processing the “big picture” scenario…experiencing the pain & confusion & anxiety in waves…we have our good days and our bad days like with anything else, I guess. I’m grieving what feels like a set back but also acknowleging there is alot that is “unseen” in God’s plan for Rudy and the rest of us. ‘Just trying to remember to breathe sometimes with everything else going on…:) Thank you for your prayers dear friends!!! There is so much my heart is experiencing that I can’t even put into words…the assurance that God understands all that is going on in and around me is of great comfort.
Settled down with Dad...t.v. can also be a helpful distraction!Hey, Big Boy!There's a smile!
A longer post will come in the next day or so, but just wanted to quickly report that Trish and Rudy were discharged late this morning. Rudy was cranky up until the end; but that changed the moment he got into his car seat. Suddenly he was all smiles as he looked out the window and made his escape. It’s OK with us if he hates the hospital–home is much better! At the same time, we’re so grateful for the UCLA team, the careful attention they pay to Rudy and the encouraging friends they are to us [not to mention the hard-to-find hospital loot they send us off with in good supply ;-)].
Trish will probably wait out the LA traffic for a bit, but we can’t wait to see them. It was fun to hear Rudy squawking it up in the background when she called me from the car! I guess the ability to vocalize more is readily evident!
Our poor boy is not enjoying this visit to the PICU. He came out of anesthesia okay at first but he was pretty upset and battled a high heart rate and low sats most of the afternoon. Even a visit from Dr. Rick and RT Oscar didn’t cheer him up but Dr. Marie just ordered the “good stuff” so we should have a sleeping boy pretty soon…if so, I’ll run out real quick and get a bite to eat and then, hopefully, we’ll both settle down for some good rest tonight.
Dr. Shapiro was successful in removing the scar tissue and as a result of Rudy’s clear airway and smaller trach size, he is more vocal… making his crankiness known to all on our side of the unit, I think. Well, okay, maybe he isn’t THAT loud but he is definitely making his feelings known. As Rolf mentioned, we were surprised but pleased by Rudy’s step down in trach size today. Dr. Shapiro is prescribing a trach plug with which we’ll practice at home before his sleep study where he will need to go all night with his trach plugged. As we did with the speaking valve, we’ll let Rudy get used to the plug slowly and put it on only as he tolerates at first. Eventually, we’ll get to the point where he’ll be ready to have the trach pulled altogether. Dr. Shapiro will want us to come back to UCLA for the actual decannulation for a day or two until the stoma closes and he is clearly breathing comfortably. Again, this may be months down the road but it’s helpful to have a clearer understanding of the process.
For now, we just pray for a speedy recovery from today’s procedure and a deep sleep for our little warrior tonight…he was a trooper today. Thank you for your prayers. Sleep well…
Thanks for praying for Rudy today. Here’s the nutshell: Trish and Rudy left SB at 3am for a 4:45 call time at UCLA for his bronchoscopy. Like good patients, they were there and ready but got pushed back due to an emergency case. Rudy enjoyed the car ride and was awake for most of it, so he got a little cranky during the wait–but you wouldn’t know it from this picture Trish sent me:
Rudy's good morning to me!
Trish called around 11am and reported that they were done and she was expecting to get called up to see Rudy shortly. Dr. Shapiro was able to completely remove the granuloma in the trachea (this is inflammatory tissue that commonly grows around trach sites), but it was a bit more work than she expected. Instead of being soft and mushy, it was hard and fibrous.
We are pleasantly surprised to learn that she decided to downsize the trach from a 4.0 to a 3.5. Like much of Rudy’s course of treatment, we are prepared for decannulation to proceed slowly and expected this step down to come further down the line. So it’s fun to take two steps on the same day. Dr. Shapiro’s assessment is that Rudy should be able to handle it, but they will keep him overnight just to monitor him.
Trish will probably give more detail when she gets settled upstairs in a few hours, but we just wanted to give an update for those who were praying. Thanks!
Rudy's Beat 