Rudy had an appointment with Dr. Harake this morning. Today’s echo showed the same enlargement of the right atrium and right ventricle as last month. As would be expected in a heart where the right atrium and ventricle are pumping blood to both the lungs AND the body, Rudy’s 1/2 a heart is overworked. The rerouting of the circulatory system between the heart and lungs that happens in the Glenn and Fontan surgeries would help to relieve the extra pressure on the heart but outside the surgeries, there isn’t anything we can do about it. The relationship between Rudy’s enlarged heart, pulmonary pressures, collaterals, etc is so intricately intertwined and the need for the Glenn and Fontan becomes more urgent to us as our understanding of it all becomes more clear!
Another common complication in Rudy’s condition is a “leaky” tricuspid valve as a result of the valve not closing properly. Dr. Harake has detected mild leakage for a while but today he feels the leakage is increasing from mild to more moderate. For now, we will treat it with an increase in medication he’s already taking but there is a chance surgery will be needed to repair it down the road…we’ll keep an eye on it. Today’s appointment left me with some questions for Drs. Dan and Harake when we consult with them after the cath.
Rudy is second on the schedule on Wednesday but we’ll need to report to the hospital at 6am just in case the schedule changes at the last minute…it’ll be an early departure for us from Santa Barbara which is becoming the custom. 🙂 Thank you for your prayers and words of encouragement…we’re so grateful for you!
Yesterday was special…a sweet reminder that life ebbs and flows and that it is possible for joy to be restored after the loss of a child. We’ve watched life continue to be lived in the lives of many of the heart families we’ve bonded with since our journey with Rudy began…families who, like us, found themselves thrust into a new reality with the birth of their heart baby and, as we’ve reported over the years, some of these families continue to live life one day at a time with their medically fragile child and some have had to endure the agonizing loss of their precious one. Rolf and I have felt, deeply, the loss of special friends like Katie and Josiah and, of course, Logan. Unlike us, most of our fellow heart parents are young 🙂 so we’ve had the pleasure of watching these special young families continue to grow!!
Katie’s parents have a sweet little boy and are expecting a new baby very soon, Josiah’s parents were blessed with a baby girl (making it THREE girls!) this past spring and Logan’s parents, well, they are thrilled to welcome a baby boy who is due in just a couple of months!! Olivia, Rudy and I got to celebrate with the Elliott’s yesterday at their baby shower and it was great fun to share in their joy!!! When Rayme found out she was pregnant she called him her “Rainbow Baby”…the rainbow that came after the darkest of storms. We are thrilled for Rayme, Brett and their girls and so grateful for Logan who, with Rudy, knit our families together forever.
An extra-special bonus to yesterday’s baby shower was getting to see nurse Sara again! Nurse Sara (who drove all the way up from L.A. to attend the shower) cared for Rudy and Logan in the CTICU at UCLA and is very special to both our families. We enjoyed a nice, long visit and Sara was super sweet to give Rudy his g-tube feed for me in the middle of the party (I thought maybe she was missing such a task with it being her day off and all – ha). Sara hadn’t seen Rudy in person for quite some time and she was excited to see how much he has grown and developed – it was so affirming to talk with her!
And so, here we are, closing the books on this crazy, chaotic month of July and looking ahead with anticipation to August. Wilson is leaving for a 10 day missions trip to Costa Rica tomorrow (Monday) and Rudy’s heart cath is on Wednesday!!! Rudy has a pre-cath appointment with Dr. Harake (cardiologist) on Monday, we’ll skip therapy and stay close to home on Tuesday, most likely be in L.A. on Wednesday and Thursday and then recuperate at home over the weekend. You’d think we would have learned by now not to get anxious about the cath but we do (shame on us!)…it’s unavoidable so, instead, we’ll tie up loose ends here at home and send Wilson off on his big adventure with a nagging pit in our stomachs and a couple of restless nights’ sleep. Ha We’ll keep you posted…thank you for praying!
This week hasn’t been as low-key & stress-free as I had hoped but it has included a bit more summer fun…Rudy and I ventured out to Goleta Pier on Monday to watch Olivia and her fellow junior guards conduct the famed “pier jump”. It was thrilling to watch these kids face their fears, stretch themselves physically and walk away pretty excited about their accomplishment. Olivia was measured and stoic about the whole thing but I could tell she was pleased. Rudy was quite curious…he tried hard to figure out what was going on as he carefully watched the jumpers, the crowd of cheering parents and the guards posted in the water.
Wilson saw a SB Zoo event advertised on the morning news yesterday for kids with special needs and their families so we decided to be spontaneous and take advantage of this neat opportunity to roam the zoo after hours. The zoo was open from 5-8pm for special needs kids and their families to participate in a variety of “meet ‘n greets” with different animals and zoo keepers. It was very sweet and especially enjoyable for Rudy…no crowds, easy access to the animal displays in his wheelchair and the unique opportunity to see a snake, raven and armadillo up close! The best part, though, was playing with the big sibs…
Rolf and I are so grateful to the SB Zoo for offering this opportunity to special kids in our community. It was surprisingly comforting to be at a public event with families like ours…I’m not normally bugged by the stares of well-meaning onlookers when we’re out and about with Rudy but I sure noticed NOT being stared at last night and it was nice. Even the kids commented that it was nice to see other siblings of special needs kids. I got the sweetest compliment from one of the other dads about how engaged and sensitive Wilson, Max and Olivia are…another reminder of how blessed we are that the big sibs genuinely
to participate in events like this that are clearly designed for Rudy and kids like him. I wouldn’t have blamed the big sibs for not wanting to go…but I’m sure glad they did…so is Rudy! 🙂
The spirit of the evening kind of gave me a taste of what our Make-A-Wish trip to Give Kids The World could be for our family and that got me more and more excited…what a morale booster and formative experience that could be for all of us!! It’s dangerous to get too attached to something that could happen 6 months down the road…so I promise not to obsess but how fun… Ha Ha
(P.S. It’s 9:30am and Rudy is just now waking up from a long night’s sleep…I love summer!)
Rudy had a BIG week this week participating in his very first Vacation Bible School! I felt very nostalgic (i.e. weepy) watching Rudy enjoy himself, Olivia creatively prepare for each night’s special theme and the big boys lead from up front on the drama and worship teams all the while remembering my own fun experiences as a child (only back then we called it Backyard Bible School…I still have the bible I earned for memorizing bible verses. ha). We were all touched that Rudy had an opportunity to join the family in this special tradition and that everyone was so accommodating and concerned for Rudy’s well being. He’s ending the week exhausted but it is energy well spent, for sure!!
Today marks the end of VBS as well as the end of summer school! Rudy’s summer school session flew by and he brought home a treasure trove of art projects documenting the fun he had. We appreciate the summer staff at Franklin School, the county staff and Rudy’s summer nurse so much…we consider Rudy’s opportunity to go to school a great gift and these folks make it possible! He’s going to miss the Bear Club classroom team these next few weeks.
* Rolf and Max took Rudy to UCLA on Monday for his appt. with Dr. Woo. Based on April’s sleep study results, Dr. Woo is ready to sign off on Rudy’s trach wean! I’ve talked with Dr. Shapiro (ENT) by phone and she has Rudy on standby with her scheduler. If it is determined during Rudy’s heart cath on August 1st that no intervention or procedure is needed in the next 6-9 months then Dr. Shapiro will get him on her OR calendar for a bronchoscopy and decannulation. If surgery is in Rudy’s near future, then it would be best to keep the trach. Either way changes are ahead and that’s exciting.
* Rudy has been doing a great job adjusting to and tolerating his foot braces (AFO’s) and he’ll start using them in therapy in a couple of weeks.
* Our lice infestation at home is under control but I’m totally living in a constant state of paranoia! When Rolf came home from work yesterday and found me wearing a hair net, he asked if I was going to stop wearing them by the time we take our family Christmas picture in November! Um, yeah, NO! Ha Ha ‘Praying we remain lice-free!!!!
A few folks have inquired if frequent flyer miles can be donated to Rudy’s wish trip to Florida specifically. I asked a representative from our nearest MaW office in Ventura who is handling this appeal and she said that miles can be donated “in honor of Rudy” and attributed toward the total number of miles needed for our family’s trip but the actual miles are put into a “mile bank”, so to speak, since miles are donated from a variety of different carriers and we’ll need a block of miles from one specific carrier for our family to travel together. Does that make sense? So, if you have some extra miles that you know you won’t use and you aren’t interested in trading them in for a magazine subscription, would you consider donating them to Make-a-Wish in honor of Rudy? Our trip to “Give Kids The World” is being planned for early 2013 so there’s plenty of time…you can contact Shanna Taylor at firstname.lastname@example.org for more information. The initial appeal that went out through Noozhawk (a local internet news publication) yielded over 120,000 miles! We are so happy to lend our story to this appeal and excited to learn more about this great organization as we travel this special “wish journey” with them! Thanks all!
I’m eager to get back to a normal routine next week…hopefully with less laundry and more summer fun. Blessings to you, dear friends. May you be encouraged and uplifted!
There actually may be light at the end of the tunnel!!! After 6 days of non-stop effort and a round of buzz cuts for the boys, we may be nearing the end of our lice infestation. I’m sure praying it’s so…this has been a draining week on all levels and we have VBS at our church next week with all of us volunteering in various roles so we need to be free and clear!
Life definitely took a detour this week but we managed to pack in a great deal nonetheless (with heads covered, of course!). Ha Ha We took a break from all that was happening at home for a few hours on Wednesday and enjoyed the annual BBQ feast at the Rescue Mission for the homeless guests. We were blessed with mild weather so everyone felt comfortable hanging out all afternoon (unlike years past when guests would eat and run in search of shade), a great mix of amplified tunes led to some spontaneous dancing in the parking lot and all genuinely felt relaxed and happy. I heard from a couple of guests how nice it was to feel welcomed at a public 4th of July event for a change! I’m so grateful the staff and residents at the Rescue Mission can provide that kind of loving experience to the homeless in our community. On Thursday night we enjoyed having the women who are graduating from the Rescue Mission Recovery Program tonight over for dinner…like last week when we hosted the men, we were in awe of these women and their courage in their recovery journey. Tonight is graduation so we have a big evening ahead of us! Lots of hope happening at SBRM this week, for sure! 🙂 And, it’s all been a helpful reminder for me to keep my troubles in proper perspective.
As for Rudy, well, he has been somewhat neglected this week…all the kids were great at stepping in and helping with Rudy when Rolf and I just couldn’t (including an incident involving a very messy, runny diaper that I won’t elaborate on right now but it was epic) but he definitely was forced to stay in his little “kiddie corral” a good bit of the week. Why does Rudy have a kiddie corral, you ask? Oh, well that would be because of the incident that happened last week before we were hit with the whole lice situation…when Olivia, Rudy and I returned home one afternoon from our mid-day shuttle run pick-ups.
I gave Rudy his afternoon feed, meds, changed his diaper,etc and set him up with Olivia to watch a little t.v. and chill while I tried to get some paperwork done in my room. Because it was a hot day, I left the garage door open to get a little cross breeze through my room as I always do on hot days and, ahhhh, all was quiet and settled in the house of Geyling. Now, I admit, I was remiss not to check on the kids for an hour but all was quiet and I assumed the kids fell asleep after a long day at their various summer activities. Well, you know what happens when one assumes, right?
Olivia came to my room white as a ghost and said “Mom, there was a knock at the front door, I opened it and…”. When she paused, I immediately went into “stranger danger” mode wondering what in the world could have left her somewhat traumatized. “It was Rudy, Mom!!!” What? How could it be Rudy? We both ran to the living room where she left him to find him detached from his oxygen, dirty and battered on the backs of his thighs and legs! We then traced his steps and discovered that he had bottom-scooted down the hall toward my room, got down the step into the garage, unplugged himself from the oxygen halfway through the garage and out the door he went (much like he did the day we cleaned out the garage but this time we weren’t out there with him!!!) From the looks of his legs and diaper, his incredible journey included a little jaunt on the asphalt as well as time spent in our front yard as evidenced by the prickly balls that were stuck to his diaper!!! Thanks be to God, he had the presence of mind when he was done exploring to bottom-scoot back up the incline to our front door and knock loud enough for Olivia to hear him!!! Needless to say, we promptly got Rudy cleaned up and got the house closed up completely grateful the incident was something we could laugh at once our hearts stopped pounding. Rudy was happy as a lark and very proud of himself, of course.
I’ve done the toddler thing three times before, I should know better but it was beyond my imagination that Rudy could do what he did to begin with and then do it so quietly that I wouldn’t hear him grunt as he worked his way down the step (which, by the way, is just a few feet from where I was) or cackle as he glided across the garage floor as he does when he’s excited! Good grief. This boy is READY to MOVE and expand his world!!!
Well, it looks like Rudy’s incredible journey may take flight sometime this winter. We’ve been in a process with the Make-A-Wish Foundation for a few months now discussing an opportunity to take the family to “Give Kids The World” – a resort in Florida designed specifically for kids with life-threatening illnesses and their families. A friend of mine went last year with her niece and said she couldn’t stop thinking of Rudy the whole time she was there. How sweet! I haven’t wanted to get my hopes up too high because a lot could happen between now and January when we hope to go but the article linked below was published in a local paper this week mentioning our trip and requesting frequent flyer mile donations! It really got us excited! Check it out!!!
We are humbled and totally honored that the Make-A-Wish Foundation is even considering granting Rudy and our family a wish for a fun, memory making trip that is safe for Rudy! The staff and volunteers we’ve talked to have been amazing …so sensitive and caring and fun. Boy, this week sure has been filled with a wide range of extreme emotions! The bottom line is…God is good, all the time…in the good times and the bad!!! Bless you friends…especially those living in all the hot spots and fire spots across the country…I’ve been praying for you too! Love and hugs…
Well, just as we wrapped up Wilson’s infected leg wound issue (yes, his culture came back positive for MRSA! Thankfully, he was on the appropriate antibiotic at home so no further intervention was necessary) our household got hit head-on (no pun intended) with lice!! Yep, for a gal who is a borderline germ-a-phobe, this isn’t a great week for me! We’re not sure how long we’ve had it but we all have it and are on day 2 of treatment with accompanying laundry marathon. I admit I’m feeling very overwhelmed and burdened with trying to treat everyone while keeping up with the constant cleaning that has to happen. I dreamt last night that we got everything cleaned up, closed up and then left for an exotic vacation for 28 days (the recommended time one should keep things bagged up after treatment)! Needless to say, I was sad to wake up.
The kids, on the other hand, have been amazing troopers (and Rolf?…quite the nit-picker!) and all are maintaining pretty good attitudes…I’m making everyone wear hair caps at home and there were even ideas thrown around last night for a “Lunch Lady” song…stay tuned! Ha The silver lining in this is that we found Olivia’s lost iPod yesterday when we tore her room apart for a deep cleaning…that made us happy. We have a huge week ahead…lice aren’t the end of the world but they sure are disrupting our world and are hard to manage when you’re low on emotional reserves to begin with…would you please pray…that we’ll nip this in the bud with this first 7-day treatment regimen and for, well, stamina, I guess? So grateful for the friends who have been able to lend a hand and our prayer warriors near and far! Bless you friends…Happy 4th of July!!!
Check out Rudy’s cute trach-tie tan line…posting it just because…