Rudy’s bronchoscopy involved a rather challenging time change for us–from the Pacific Daylight Time Zone to the Hospital Time Zone. In the round-the-clock world of the UCLA Med Center a pre-op check-in time of 4:45AM is part of business, but it was a bit of a start for us. It meant getting Trish and Rudy up at 2AM and then on the road by 2:45–at least there’s not much traffic at that hour.
Trish called shortly before lunch to say that everything went very smoothly. Rudy went in at 7AM and was back in recovery by 8:30. He took a bit to wake up and is a bit bugged by the lines attached to him (that’s actually an encouraging and new development to see him spunky instead of lethargic and resigned).
Dr. Shapiro said everything looks good except for a node of scar tissue just above the trach that will require surgical removal when it comes time to remove the trach. This is not uncommon, but it will likely mean that the trach will stay in unless it is certain that we have over a year to wait before the Glenn (highly unlikely). She said that Rudy’s vocal cords look mushy (OK, that’s our term because we forgot the science word Dr. Shapiro used). It simply means they are not toned and tight like they would be through vocalization, but there is no reason to believe they won’t develop properly when the time comes.
Dr. Shapiro would like to keep Rudy overnight, but there is a bed shortage upstairs so that may change. Thanks for praying. Now, I’m about due for another cup of coffee…
Here it is…August 1…the start of another new month! Even when one tries to take life one day at a time and stop to savor the moments that make up each day, the days add up so quickly and then “poof” another month flies by. The milestone of each month for Rudy is a milestone of hope and gratitude and I can’t help but look back at the start of this journey at the time of Rudy’s diagnosis (2 years ago this week!), at the first internet searches we made for “Hypoplastic Left Heart Syndrome” to try to figure out what in the world our little boy had and what we were facing and at the first blog sites we found of little ones well into their fight with HLHS at 18 – 24 months wondering if Rudy would make it that far and…he has. With all it’s twists and turns, ups and downs and lingering unknowns, we stand before God today profoundly grateful for the past 22 months. Rudy truly has captured our family’s heart beyond what I allowed myself to dream…I’m still easily overcome by fear but, oh, so thankful.
The past week was full with my sweet family’s return from Alabama, two visits with old friends from out of town and a garage sale the kids and I have been planning for the past month! Needless to say, Rudy was thrilled with his Dad and big sib’s return home, was pretty smitten by our guests and thought conducting a garage sale is a GREAT way to spend the day! The common thread for Rudy in all of the above was ATTENTION, ATTENTION, ATTENTION! My, how he loves to be a part of the action! 🙂 We have just 3 weeks left of our summer vacation and then Rudy is back to long, quiet days with just Mom. Ha
Rudy's glad everyone is home again!
This week will bring another trip down to UCLA for Rudy’s bronchoscopy. Rudy and I will head down early Tuesday morning and he will likely be held overnight for observation…if all goes well, we should return home on Wednesday. This procedure allows Rudy’s ENT, Dr. Shapiro, to take a detailed look at the inside of Rudy’s airways. She will look for scar tissue and whether or not the cartilage supporting his trachea is strong – crucial to his success weaning off the trach. We anticipate a good report and pray he doesn’t pick up a nasty bug while in the hospital (his last bout with c-diff was NOT fun!). So, we’ll certainly have more details to share on Tuesday.
I want to thank everyone for the thoughtful blog comments, emails and cards that we’ve received since my Dad’s passing! It’s hard to respond to everyone individually but I just want everyone to know how much I appreciate the encouraging words and prayers. I’m still processing all that I experienced during my visit back to Kansas (some amazing highs and bitter lows) and seeking God for wisdom and understanding as I move forward in grief and in life…your prayers are uplifting and I thank you.
It’s Friday night and Rudy & I are sitting in our quiet house, smiling at each other and enjoying each other’s quiet company. It’s so surreal to think it was a week ago tonight that I sat at my Dad’s side after a VERY LONG travel day to get there…although he was out due to the morphine drip and his breathing seemed labored, I was just so relieved that he was comfortable and I was there…the anxious tears I shed all day as I was in transit disappeared, my heart relaxed and I just tried to take it all in. My mom, brothers, their wives and the Wilson cousins were all there too and we spent Dad’s last night celebrating my folks’ 54th wedding anniversary (which had been the day before) with cake and milk, singing, looking through his scrapbooks and chuckling over some old letters Dad wrote over a half century ago. My brothers and I spent the night with Dad and I drifted in and out of sleep listening to his breathing…heavy but strong and steady. We decided the next morning that Dad must have been marathoning to Jesus which made sense because he always was a distance runner. And then it happened…that Holy Moment when life on earth crosses the threshold into life eternal…we were there, my brothers and mom and sister-in-law, talking about our breakfast plans when his breathing became shallow and then just stopped…so peaceful. A peaceful finish for a man who wasn’t always at peace…a man who didn’t find out he was adopted until his mother told him in a fit of anger as an adult; a man who had trouble expressing his feelings, communicating and relating which contributed to a strained marriage for many years; and a man who lived for decades with the disappointment of an unmet dream and yet I noticed a change in Dad the last 10-15 years. In a season of life when many get even more set in their ways, Dad demonstrated humility and growth and the ability to change as he learned to communicate and share his feelings freely…he began to relax and enjoy life. A woman from the church told me at his funeral service that when she visited Dad in the hospital early last week, they were joking around and bantering as they always did and at one point she said “How do you feel Dick?” to which he answered “Happy”. What a gift! I’m proud of my Dad…and not because of all his athletic accomplishments but because he was a man of quiet character, kindness, respectfulness, discipline, humor, faith and loyalty. He worked hard, loved his family and honored his commitments…he ran a good race with all its hills and valleys and , in the end, God awarded him with grace in his journey with cancer, peace in his final months of life and happiness in the hours before death. Oh, that I might have a finish like that too! Thank you, Dad, for the love you shared with me, Rolf and the children; for laughing at my jokes and for affirming my life choices. I’m going to miss your big smile and strong hugs, the pinochle challenges and the stops at Dunkin’ Donuts but the greatest gift you gave me was your example! How grateful I am to God for you!
After the whirlwind of planning and executing Dad’s funeral service, I flew back to California early Wednesday morning in time to take Rudy to his appointment with his ENT surgeon at UCLA. It was of great comfort to spend the day with Rolf and Rudy even if it was within the walls of the UCLA Medical Center…and we were encouraged by our consult with Dr. Shapiro. Based on the little she could examine in her office, she thought Rudy’s airways are looking healthy…she was encouraged by his growth and color. She’ll conduct a bronchoscopy on August 3rd which will allow her a closer look at his airways to make sure there isn’t any scar tissue and that the cartilage supporting his trachea is not compromised. ‘Still not sure if Rudy will wean off the trach before or after his next heart surgery…waiting for details to unfold.
The big kids are still in Alabama and Rolf joined them yesterday for a little Geyling family reunion…they all return on Monday and life will move forward…slowly getting back to a familiar routine. I admit that losing Dad does shake my confidence a bit as he and Rudy started their battles for survival at the same time and his fight was a source of great encouragment and inspiration to me as I’ve walked alongside Rudy. So now we take a minute to catch our breath, regroup and focus our energy on the steps ahead…right foot, left foot, one step at a time!
"Paging Dr. Harrison" - Rolf is becoming a bit too familiar with UCLA Medical Center!
We didn't need KU to tell us he was a Hall-of-Famer, but it made us all the more proud!
Rudy’s Grandpa Dick crossed his final finish line this morning. Trish made it to Kansas and was able to be at his side with her mother and brothers. I know that she will want to write more when things settle down so a longer post will be forthcoming. We love you, Grandpa Dick!
My Dad’s 21-month battle with brain cancer took a sudden turn for the worse this week and I’m making arrangements to fly home. We found out last week that his treatment is no longer effective and the cancer is spreading fast so my folks met with home hospice in preparation for when they reached the need for hospice care. An unexpected fall on Sunday evening led to hemorrhaging of the tumor and paralysis of his left side. Although the ER doctors doubted he would survive the night, Dad stabilized by Monday morning and was alert…joking with my nieces and nephews when they came to see him. It has taken us a few days to work out the details on our end but I’m freed up to go home on Friday and stay through next Tuesday. Fortunately, the big kids are scheduled to fly to Alabama to visit some of Rolf’s family on Friday and thanks to Rolf and a handful of nurse friends, Rudy’s care will be covered here at home! Rudy had his monthly cardiology appointment yesterday and his heart status has not changed…he remains stable which was confirmation for my heart that I can leave.
Of course my prayers are for Dad’s comfort and peace…I’d love to make it in time to hug him and sing for him in person but he began experiencing pain today, as expected in this process, and is now sedated on pain medication. Although they talked on Monday about sending Dad home with hospice care, the plan now is to keep him at the hospital in Lawrence. I’m comforted by the fact that my brothers are with my Mom and Dad…by the sweet phone conversations I’ve had with my Dad this week…and so deeply grateful for the family trip we were able to make to Kansas over spring break!! God has been very gracious to us and His peace fills my heart. Please pray for that peace to blanket my Dad; for my Mom, brothers & sister-in-law as they walk these hours/days with my Dad and for my precious family as we’re spread all over this next week. In times like these I just want to gather all my chicks and circle the wagons and instead I’m sending my big kids to the other coast and leaving my little halfheart behind for 5 days…
I’ve been reminded all week of Philippians 4:4-7…verses we shared at Rudy’s dedication and of deep comfort for me the last 21 months. Here’s a paraphrase:
“Delight yourself in the Lord, yes, and find your joy in Him.
Be known for your gentleness and never forget the nearness of our God.
And don’t worry – whatever is going to come.
Just tell God every detail and the peace of God that no one understands will come to you.
No, don’t worry. Just tell Him every detail and His peace will come to you.”
Dad and brother Steve on Father's Day 6-19-10A big smile for Grandpa Dick...sent via IPhone in a snap! Technology can be amazing!
July 1st…not only the start of yet another month but also Rudy’s 21st mensiversary! It was a somewhat uneventful day (although we did get to spend a good portion of it at the Rescue Mission which is a fun place for us to be).
It just so happened that Rolf finished Rudy’s custom crib the night before so we got it all set up in time to unveil it on this milestone day…replacing the port-a-crib bassinet Rudy should have been out of 16 pounds ago!!!!!
A little known fact about Rolf is his ability to make beautiful furniture…
i.e. My cedar-lined chest: circa 1992
i.e. The Kids' Rocking Moose: circa 1997
…it doesn’t happen very often as it is pretty time consuming but it sure is a blessing when it does happen.
We just couldn’t find a suitable “day bed” for Rudy that met all of his needs and also ours as we needed it to fit a very specific space in our living room and be a specific height to save our backs (our little chunk is getting pretty heavy!) so Rolf was inspired to get back into the shop and unleash his creative energy…
Rolf's custom crib for Rudy!
Rolf surprised me with an added shelf for Rudy's equipment AND a little saline holder up top...see it?
If we prop him up, Rudy can hold on and sit up a bit...he has so much more room to sleep and play!
July 1, 2010 - 21 months old
He’s pretty excited about it…Happy 21 months little man!!!
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. MykeRudy 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!!
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 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!
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 JackNope, 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!
Rudy's Beat 