I’m sitting here at UCLA grappling with entitlement issues…I never waited for Rudy during one of his procedures without the luxury of a private room in which to wait. Here it is 2 1/2 hours since they took Rudy to the cath lab and I’m sitting in the little lounge area on the 1st floor waiting with the other commoners. Ha Ha Just kidding, I’m happy not to have a permanent residence here again but it is weird to be back in such familiar territory. I haven’t heard anything from the team conducting the cath yet but since Rudy got such a late start today, I’m almost certain we’ll have to stay the night for observation. Rudy has a great team of folks with him today that know him well. Rudy waited patiently all morning and didn’t complain eventhough I know he was getting very hungry. He is such a sweet baby. I’ll post again when we hear something…thanks for praying!!!!
Author: Trish
What A Difference A Few Months Can Make!
When you see Rudy from day to day, it’s sometimes hard to see the gradual changes and growth he is experiencing but Rolf and I were struck this morning by how far Rudy has come since his post-op days back in October!!!! Rudy has settled into a nice routine and been so content and cooperative since our return from hospitalization #2. The Glenn may be coming up quicker than we had hoped originally but we are encouraged by his ALMOST 2 pound weight gain and the “twinkle” (not quite a smile yet) that emerged this week to brighten up his whole face. Speaking of weight gain, Rudy may start packing on the pounds now that we have cleared the rice cereal hurdle. After several failed attempts at cereal feedings, Rolf (a.k.a. The Baby Whisperer) fed him an entire serving of cereal this morning and Rudy finished it in record time without gagging!!! Something “clicked” for him and when we sat down at noon with serving number 2, he started to smack his lips like a little baby bird eager for what was coming. Any progress we can make now and get firmly established is a blessing as I’m sure we’ll lose a bit of ground in the weeks following the Glenn. He may have to relearn some things but at least we can rest assured that he can do them!!!
Speaking of hurdles, Rudy had a first today that would make Gpa Dick happy…Rudy attended his first track meet! Special friends from L.A. were in town for a Regional Club Track Meet and we were thrilled to cheer our Emmie friend on as she ran the 4 x 100m relay. We missed seeing big brothers Jake and Levi but were blessed to catch up with Robin, Tommy, Emmie and Eileen and the goings on back in L.A. -refreshing fun!
June will be full of grandparent fun as Oma and Opa fly in today for a two week stay and Gma and Gpa will come for the last two weeks of June – overlapping so all grandparents will be here for Rudy’s dedication – so special!!! We have a big week ahead…Wilson’s promotion to Jr. High on Tuesday, Rudy’s angiogram (cath) at UCLA Wednesday and Thursday, last day of school on Friday. We’re anxious to get the information from the angiogram and a game plan for the Glenn but also sensitive to not let it overshadow the other big events of the week. Please pray specifically for Rudy’s health as the procedure will be postponed if he gets sick. As it turns out, our little half-heart is the healthiest in our household right now…the others are battling congestion, coughs and a low-grade fever – normally not very notable but this is a bad weekend to have a little bug hanging around.
Don’t forget to “save the date” on June 12th!!!!!
Blessed by your continued prayer support, 🙂
A Memorable Weekend of “Firsts”
We’ve been off-line for a few days and are eager to get back on to tell you about a few “firsts” for Rudy. After careful consideration and preparation, Rolf and I decided to attempt a little family roadtrip to Pine Valley, CA (just outside San Diego). Our dear friends, Grace and Marlin (Rudy’s godparents), were marrying off their son Josh (of whom I have very vivid memories toddling around in diapers, I might add). We wanted to be there so bad as it would mean so much to us and the kids to join in celebrating Josh and Emily in person. We went back and forth on the decision but by Thursday morning Rudy was looking good and we figured if he didn’t tolerate the drive or he wasn’t looking comfortable, we’d just turn around and come home. San Diego has a good Children’s Hospital nearby so we knew we could get help if we needed it. As it turned out, Rudy did GREAT!!! Our six-hour trip landed us in Pine Valley around 1am Friday morning. Thanks to the generosity of some friends of Grace and Marlin, we borrowed a mobile home that was conveniently parked right next to their house so we settled in, went to bed and enjoyed falling asleep to the sounds of rural California. So, Thursday marked Rudy’s first “roadtrip” that didn’t involve UCLA as it’s destination. Friday marked Rudy’s first wedding. We were able to help with last minute preparations a little bit on Friday morning before the 2pm ceremony. It was fun to watch Grace and Marlin navigate seemingly effortlessly the many details of the day, to visit with their family from Canada who I haven’t seen in almost 20 years (!) and to introduce Rudy to many friends in our San Diego circle who have been praying for him so faithfully. As you can see from the picture below, Josh and Emily were glowing…a confident young couple we are proud to know and were thrilled to celebrate. Rolf and I found the escape from the daily routine and telephones very refreshing and it was good for the soul to be together as a family.
We enjoyed the VanNortwick’s hospitality one more day and packed up early Sunday morning to make our way home. Rolf was kind enough to record the Indianapolis 500 for me so we looked forward to tamales in front of the t.v. watching the race as soon as we got home. I found out last week that my friend and neighbor Jannele likes the Indy 500 maybe as much as I do so I avoided making any contact with her as we drove in so I wouldn’t find out any race results! We have a date to watch the race together next year. 🙂 So, Rudy’s big first yesterday was hearing Jim Nabors sing “Back Home Again In Indiana” and watching the start of “the greatest spectacle in racing”- nothing could be better. Rudy dozed off pretty quick as did Rolf and I at about lap #160 but Max dutifully woke us up with only 3 laps to go to see Helio cross the finish line for his third Indy win!!!! Rudy missed the big finish but I think he liked all the excitement nestled snuggly in his little port-a-crib set up in our living room. Good times…good times.
Mein Lieber Rolf…
…is another year older!!!
- Rolf and his sister Andi in the “old country”! Nice Lederhosen!!!
Actually, from what I understand, this was typical school attire for Rolf growing up in New Jersey!! As you can imagine, he was quite popular…never made fun of! All I can say is “What a STUD!!!”.
The big kid at heart is forty-something, something today and we, in our household, sure are celebrating him…so thankful God made him 40+ years ago and now he’s ours. A Big Happy Birthday to the man I love and the Daddy that is cherished by 4 little lieblings.
Where has the week gone?
Hello dear friends!!!!
The lack of posts this week is less an issue of having no information to share and more due to the fact that life with Rudy home is busy…leaving little time for any of the “extras” in our routine! I’m embarrassed to admit that I crashed on the couch well before the big kids’ bedtimes more than once this week. Ha Ha The adjustments continue, for sure, but the good news is that Rudy is doing well and enjoying life at home since his discharge last week.
Our week was filled with many appointments as a follow-up to his discharge. Everything is checking out okay. Rudy’s SB cardiologist feels his Glenn may need to be scheduled within the month. My prayer has always been to have Rudy home for a full 2 months before we engage in the next open heart surgery so I continue to hope we can put it off until July. A heart catheterization is scheduled for June 4th which will help determine when the Glenn should be scheduled.
One of Rudy’s appointments was with a pediatric eye MD in Ventura. There has always been concern about Rudy’s eyes wandering and, often times, fixated to the left. This was particularly evident when he was in the hospital but I’ve noticed a distinct improvement since we’ve had him home. The opthamologist feels there may be a need for surgery in the future but would like to give Rudy’s eyes a chance to strengthen and correct themselves. We’ll reevaluate in a couple of years. He’ll definitely need glasses which will be prescribed when he starts to walk but, otherwise, his eyes are healthy for which we’re very grateful!!
When we weren’t off to an appointment, I was home on the phone working to set up various services for Rudy and trying to navigate the whole insurance/medical services system. This is not one of my strengths so I probably made it more frustrating for myself than need be. I told Rolf last night that if taking care of Rudy is all that we had to do, the journey would be pretty simple…it’s all the logisitics and communication with outside agencies that complicates the process for me…a bit of a challenge for an introvert, I guess!
The older kids are starting to wind down their school year as the official countdown is on (just 3 more weeks!) and in that there are a ton of special school activities and programs to prepare for so they are quite busy, busy, busy!!! It’s pretty staggering to think about the fact that Rudy came just one month after school started and is settling in at home just one month before the school year ends – forget “where has this past week gone?”…where has the school year gone?!!!! Life is speeding by at rocket speed…with the Glenn just around the corner, I don’t imagine life will slow down anytime soon but I do welcome the lazier days of summer. 🙂
Tender Mercies
‘Woke up this morning praising God for the cooler temps and the thick layer of fog that rolled in late last night and pushed the fire back up the hill away from Santa Barbara proper. His mercies are new every morning…and I’m grateful for the relief today. Praying, now, that this window of relief will be long enough to allow the fire crews to get the upper hand.
Rudy is sleeping and comfortable, Rolf and the kids got all dolled up (see pic below) to go to Westmont College’s graduation this morning (Congrats Nina, Joe and Becca!!) and I’m holding down the fort here at home with Rudy. Thanks, again, for your prayers and concern!
Let It Snow, Let It Snow, Let It Snow
As Rolf mentioned earlier, the winds shifted late yesterday afternoon and the firestorm raging in Santa Barbara started heading our direction. As a result, we woke this morning to a thin blanket of ash on everything. Our kids have never experienced the joy of a snow day before but they came close today when they bounded through the door just minutes after we sent them off to school on their bikes announcing “Mom, Mom School’s closed!”. As we watched the ash fall from the sky it felt like a snow day. ..okay, not really, but it provided some excitement at the start of our day nonetheless.
As you can imagine, today was kind of disorienting. I spent the day getting Rudy settled back into the home routine again all the while making mental notes and contemplating how we would evacuate this little guy and all his equipment if we had to. Right now the evacuation WARNING (not yet mandatory) boundary ends just east of us at Fairview Ave. – about a mile away. At this point, fire isn’t a threat to us…what would prompt me to evacuate is the air quality. So, we’re keeping an eye on the news coverage, keeping a close eye on Rudy and will come up with a plan of action should we get the reverse 911 call that alerts us to any evacuation warnings issued in our neighborhood.
Rudy slept almost the entire day…like the rest of us, he is hot and sweaty and we are doing our best to keep him cool but it’s difficult because Rudy is somewhat housebound and we’re kind of living in a furnace with the doors and windows closed up tight. Rolf was able to take the older kids down to the beach south of Santa Barbara this afternoon and the kids enjoyed a break from the less than favorable conditions here in Goleta. Although wildfires are not uncommon in our community, the current situation is the worst long-time Santa Barbara residents have seen. For us it’s just disorienting and uncomfortable but our hearts are burdened for the thousands this firestorm has displaced and for our friends who are and will be legitimately threatened before this thing is under control. Currently the major hot spots are in unpopulated areas high above Santa Barbara…we are praying for cooler temps this evening and for the sundowner winds to be silenced. Sundowners pick up in the evening and are hard, dry winds that push off the mountain ridge toward the ocean…these winds have fueled the fire the last couple of days pushing it toward the populated areas of Santa Barbara that lie between the mountains and the coast. We’ll keep you posted as things develop…
Rudy’s discharge yesterday was, once again, met with lots of well wishes from our dear friends in the PICU/CTICU as we made our way down the hall. As always, we are so grateful for the TLC Rudy receives at UCLA and we pray these next several weeks before his Glenn will be spent at home getting bigger and stronger.
Loaded and Ready…
Well, Dr. Bulut gave us the order to be discharged at rounds this morning, I loaded my things in the car and have Rudy’s stroller packed full with medical supplies they are just going to throw out after we leave so we are ready to go, go, go!!!! I signed the necessary papers and have our updated list of meds…now we’re just waiting for the medical supply folks to arrive with the oxygen. After a quick training on how to use the equipment, Rudy and I will hit the road and will not stop until we get home (no potty breaks for mommy!!!) I’m praying for a smooth, quick ride especially as we make our way past the fire area in SB (hoping there isn’t any delay on the 101 Freeway). I’ll post once we’re safely settled at home.
Be Still My Soul!
It’s so funny…on the drive down to L.A. this morning I listened to this hymn over and over thinking “I’m so thankful I’m at peace…things are looking good at UCLA…I’m going to pick up Rudyand get him home, YIPPY, etc, etc, etc”. Then I walked into Rudy’s room and was met by the charge nurse with the news that Rudy needed to stay for another day of observation because of an episode that happened earlier. “How could this be? Rolf just talked to Nurse Courtney and all was ‘a go’!”. BE STILL MY SOUL…I had to remind myself. As it turned out, the episode was a particularly disturbing one and I don’t doubt keeping him an extra day was a wise move, it’s just that these curve balls always occur in the 11th hour forcing us to stay which puts Rudy at risk for catching another bug or spiking another fever…it can feel like a vicious cycle sometimes. “Be still my soul…in every change, He faithful will remain”.
So, apparently this morning around 6:30am Rudy’s sats plunged into the 40s (not uncommon for him) and he became agitated (also not uncommon during his episodes). The nurse called for help when his eyes rolled back in his head and Dr. Robert (who wasn’t attending on the PICU side but happened to be standing right outside Rudy’s room) responded to her call and began bagging Rudy when he didn’t detect any chest movement. Ugh! Now at first I wasn’t too concerned because the desats, agitation and even the eye rolling are all things we’ve seen before and from which he usually recovers pretty quick but the apparent lack of breathing is what concerned the team that rounded this morning and what dc’ed the plan for discharge.
In response, an echo and xray were ordered and both showed that the heart and lungs are clear so there really isn’t any explanation for the low oxygen sats. From 10am-2pm Rudy sat-ed in the 30s and 40s pretty consistently by 6pm he was sat-ing in the mid-70s and there really wasn’t any difference in the way he looked from one to the other!!! That’s what is so maddening about it…if it weren’t for the monitor, I wouldn’t know he was in dangerous territory!!!!
So my prayer this evening is that Rudy’s numbers remain strong throughout the night, that no fever develops and that he will rest comfortably and soundly all night in preparation for discharge TOMORROW. As of this afternoon, the team ordered to send Rudy home with oxygen. Our discharge coordinator started working on getting it set up with our medical supply company right away so, prayerfully, the logisitics of all that won’t be what prevents us from going home tomorrow. Once again, our family was pretty disappointed this afternoon and Rolf and I fear our words are starting to sound pretty empty to the older kids as our claims of “bringing Rudy home today” aren’t materializing.
Of course, watching the news all afternoon kept the goings on here at UCLA in perspective as I watched the community of Santa Barbara ablaze. We are so grateful that our neighborhood and home aren’t threatened but many of our friends are being evacuated and our prayers are for the hundreds affected by this latest fire storm. Thank you to the many who called or emailed concerned for our safety…please join us in praying for our community at large.
As always, we’ll keep you posted as tomorrow unfolds…thank you for your support and prayers through this last hospitalization…a harder adjustment after having the little monkey home for a couple of weeks! 🙂
Happy 7-month Birthday!
Today was much like yesterday…a day of rest and waiting. It was, however, a day with a couple of firsts…Rudy’s first hair trim (around the ears) and Rudy’s first attempt at rice cereal. I left for Santa Barbara before the cereal feed so Nurse Barbara sent me the pictures below. So sweet! ‘Prayin’ for good culture results tomorrow and a plan to bring Rudy home in the next few days. We’ll keep you posted…
Rudy's Beat 