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.
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.
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.
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:
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!
We were blessed by a quick visit from Dr. Dan this weekend who was in town to run the SB 1/2 Marathon! He told us proudly when we were down for Rudy’s cath that he was going to run in Rudy’s honor so we outfitted him with a “Team Rudy” shirt. We threatened to pull our sponsorship if he didn’t finish…thankfully he performed well and from the looks of the picture he texted us below, he had a good time too. Thanks Dr. Dan!
Rudy and I head down to UCLA early tomorrow for another Bronchoscopy…the purpose of this procedure is to remove the scar tissue in his airway in preparation for trach removal. Rudy’s ENT, Dr. Shapiro, has scheduled an overnight stay in the PICU for observation and we should return home on Wednesday. It doesn’t sound like much fun but it’s pretty routine and we trust Rudy will bounce back quickly. Once the scar tissue is removed, we can schedule the sleep study at Children’s. It sounds like this can take a long time to get in the books so we may not get in before the holidays – we’ll just wait and see. In the meantime, Rudy is getting alot of practice with his speaking valve these days – so much so, that the big kids asked recently if we could take the valve off because Rudy was making so much noise they couldn’t hear the movie they were watching. Ah, the luxury of having a little brother with volume control!!! We’ll have some big adjustments ahead when that trach comes out permanently! Ha
Yesterday was Rolf’s and my 18th Anniversary and, ironically, we’ve had a number of people ask us recently how we (as a couple) are doing so I’ve had our relationship on my mind quite a bit lately. It seems appropriate to share a bit of an update on Rudy’s Beat as this is part of the journey. We’ve purposed to be transparent and detailed in our account of our life with Rudy primarily to encourage people to pray…to pray informed, passionate prayers on our behalf because from the very start we were keenly aware of our inadequacies and our desperate need for God in all this. We’ve experienced an abundance of God’s grace throughout this journey and a good bit of that grace has spilled over into our relationship as well. I think I’ve mentioned it before but Rolf and I do pretty well in crisis…this is by far the biggest life challenge we’ve ever faced together but we have always been good partners in hard times. I’m deeply grateful for this and I don’t take it for granted. We’ve learned over the years that humor and not taking ourselves too seriously serve our relationship well in times of crisis and since Rudy’s diagnosis, we have given each other a pretty wide berth…trying hard to keep the emotions and responses to one another (and the things not done or said) in perspective of the big picture and to not take the negative stuff too personally. This coupled with an occassional “check-in” counseling session has helped us really love each other in this and not turn on one another in fear or pain.
This is a good place to be in while navigating crisis but not a great place for any relationship long term. Where Rolf and I are challenged is in our ability to set aside the demands of Rudy’s care and our family to really prioritize each other. We’re so great at “family” but challenged, at times, at “us” and we’re both feeling it. Giving each other “a wide berth” is an expression of grace but gone unchecked too long and that “wide berth” can become an unhealthy distance and we want to guard against that from happening. I wonder how we transition ourselves out of “relationship-survival mode” and into a “new normal” where attention to the details of “us” gets first dibs. Where does the energy and creativity and focus come from when life is at its fastest and most stressful? And so, we pray and ask for continued grace as we seek to grow in our love for each other and make year #19 even better than the 18 before it. Happy Anniversary Rolfi…I’m glad we’re doing life together!
There is so much that went on this past week and I’ve been having a hard time figuring out how to report on it all…some things having to do with Rudy and his care, some things having to do with the life of our family and SO MANY things we are still processing in our minds and hearts. In some ways I feel like we’ve been darting all over the map both physically and emotionally and then it dawned on me yesterday that there is an emerging common thread of “God’s grace” evident in all that is going on and suddenly it all feels very much connected and intertwined!
I think the shock of Rudy’s cath results is starting to subside and the heaviness is settling in…Rolf and I are both having a hard time focusing during the day and daily tasks are taking twice the amount of energy and time to accomplish. Nights are the worst…the hours between 2 and 4am are especially bewitching and restless sleep is the norm these days. My week last week culminated with the need for a root canal which added to the feeling of agony and heartache (not to mention toothache!). And, yet, in the midst of the “pit in my stomach” pain and uncertainty, there is an undeniable, deep-rooted peace. It’s a curious experience…pain and peace coexisting equally in the very same moment. Our good friend Bob describes it as the “miracle of God’s presence” and I have to agree. God’s presence brings with it peace and His sovereignty brings hope and the two are powerful antidotes for fear and despair. The feelings of sadness are very real and yet the penetrating peace and hope of God are just as real and bring comfort to a mother’s (and father’s and sibling’s) tender heart…ah, God’s grace!
The miracle of God’s presence was also demonstrated about 3 weeks ago when a sweet, young family visited our church for the first time. We bonded quickly with this family and found out as we visited after the service that they lost their 4 year old daughter a year ago November. Joele’s condition was different than Rudy’s but she had similar equipment and so the connection took on even more depth. A week later we shared common stories of frustration with insurance battles and medical supply mishaps when the subject of wheelchairs came up…when we shared about our current battle to get Rudy a comfortable and appropriate wheelchair or medical stroller, Kara’s face lit up and with tears in her eyes she explained how she had been praying for direction about whom to pass on their daughter’s medical stroller and believed Rudy was the one. Long story short, I picked up the device the day before Rudy’s cath to try it out for the weekend and it couldn’t have been a more perfect fit! The minute I put Rudy in it he kicked his feet in excitement and clearly felt like a big boy sitting up high and supported in the middle of whatever’s going on. The generosity of Jeff and Kara in the wake of their own deep loss is profoundly moving to us…ah, God’s grace!
(For those of you who inquired about contributing toward Rudy’s wheelchair, we are now transferring our monies and energy toward the purchase of a modified van to accommodate Rudy’s new device. Please know your gifts will be used toward this purchase and benefit both Rudy and our family as we settle into this next phase of Rudy’s mobility!)
After the draining week we had last week, I wasn’t too excited about the full weekend we had ahead of us but “duty” soon turned to “joy” when I realized that the weekend was full of events that represented my big kids’ passions…Wilson’s first drumline performance in the GVJH marching band, Max’s football season finale and Olivia’s ability to combine creativity and fun as she prepared for Halloween. Just a few days earlier Dr. Rick encouraged us to “not worry about Rudy and love all our kids” and here we had a weekend filled with “out of the ordinary fun” that helped me grow in my love and appreciation for our kids, their interests and their heart. This weekend was a helpful reminder that the lives of our older kids are active and colorful and rich and should be freely celebrated with gratitude and love…ah, God’s grace!
Looking ahead, Rudy has two more doctor appointments this week and by the end of Friday, we will have touched base with all of his specialists and updated everyone. So far, no one wants to make any major changes in Rudy’s treatment. I spoke with Dr. Shapiro (UCLA ENT) late last week and she agrees with Dr. Pornchai that our next move should be to wean Rudy from the trach. She feels the scar tissue detected in Rudy’s airway during his bronchoscopy in July could likely prevent him from having a successful sleep test off the trach so she wants to remove that scar tissue before his sleep study. We scheduled that procedure for next Tuesday (November 9th) . Rudy will need to stay the night for observation and we’ll return home on Wednesday if there aren’t any complications. Once he heals, we’ll do the sleep study (hopefully in the next couple of months) and then start weaning him off the trach maybe at the start of the new year. Under different circumstances this would be a real exciting milestone to conquer but, I admit, my heart is heavy over it knowing the only reason we’re moving forward on this is because the Glenn isn’t happening…oh, for more of God’s grace!
Other than that, Rudy is happy, active and none-the-wiser! He thought Halloween was pretty cool but thinks Wilson’s drum set from school is even cooler…