Since school started, the pace at home has picked up and time is FLYING by. There are so many new experiences for Rudy about which we’ve wanted to post but they are happening so fast and a big snowball is starting to form…rather than go into lengthy descriptions of all the fun, I’ll let the following pics speak for themselves.
When Rudy last saw the Docs at UCLA in early June, the hope was to push the Glenn back to late September or early October putting us back in the hospital around Rudy’s 1st birthday. Well, after today’s appointment with Rudy’s SB cardiologist, it looks like we get to hold off and push it back even more which means we can party at home on October 1st!!! Yippy!!!
As much as I would love to have a general timeframe for the next heart surgery so I can begin planning for the family’s needs during Rudy’s next hospital stay, the fact that we get to wait another month to answer this question is a good thing for Rudy. Strong lung function is important to the success of the Glenn procedure where the superior vena cava is ligated (or cut) from the heart and connected directly to the pulmonary artery. The “blue” blood then goes directly to the lungs instead of through the heart. Given Rudy’s chronic lung disease issues, the more time his lungs have to grow and strengthen, the better! In layman’s terms, it is risky right now to do the Glenn procedure on Rudy but there will come a time in the not so distant future when the risk will lie in NOT doing the procedure. We’ll know this shift has occured when Rudy’s oxygen sats lower and remain low even when he is on oxygen. Our next scheduled appointment with Dr. Harake (SB Cardiologist) is October 9th…if things remain the same for Rudy, we’ll plan another 4-week appointment and so on until his condition changes and surgery is finally on the table (no pun intended).
The “not knowing when” is driving me crazy but it is clear that the best approach to managing all the intricate unknowns of the next few months is to not attempt to manage it at all and take it ONE DAY AT A TIME…why do I have to CONSTANTLY remind myself to do this? Correction…I’M driving me crazy!!!! 🙂
Most importantly, at 17 pounds and 27 inches, Rudy is doing well today and we pray for his lungs to heal and his body to continue to grow preparing a healthy foundation on which to take the next step in this HLHS journey. Thank you for your continued prayers as we all wait together!
I just had to post the following link to a radio interview my dad did this week. If you have a minute, it’s a great interview for a wonderful cause. Dad is participating in the Head for the Cure 5K Race/Walk (www.headforthecure.org) on September 13th in Lawrence, KS in support of brain cancer research. Although he will be starting a new chemotherapy regimen this month, his doctor has given him the go-ahead to participate with a few precautions in place. Once again we cheer, “Run, Grandpa, Run”!!!
To hear the interview, click here, and then click the “Dick Wilson KLWN Radio” Bar to start!
Since we’re on the subject of links…here’s one more for you. Rudy made Greg Lawler’s photo blog again (not like we’re counting or anything!)…boy, do I wish I had his gift for capturing precious moments. Click Here!
Okay, all that should be in school in the Geyling household are safely tucked in their classrooms and the major “closet purge” and “spring cleaning” here at home has begun! Rudy is sitting in his bouncy chair and comes with me from room to room wondering what in the world I’m doing.
We tried to recreate the first day of school fanfare for Max this morning…Wilson and Livy were kind of over it but Max was his typical enthusiastic self. We’re relieved his fever finally broke and we continue to pray Rudy doesn’t get the virus as fevers have a more complicated effect on him.
Okay, Rudy and I are going to go figure out how to use the carpet cleaner in preparation for tomorrow’s home project…another new and exciting experience for the little guy!
…well, for half of our litter anyway. Poor Max has been battling a fever on and off since Friday and woke up with another this morning so all the hustle and bustle of the past week getting ready for school culminated in big tears when we told Max he couldn’t go to school today…he was crushed. We told him to look on the bright side – at least the pressure of “perfect attendance” is off his back! It is a bummer and not how he wanted to start off 5th grade but we hope to get him rested up, in to see the doctor this afternoon and past this bug lickety-split. Olivia was a little timid when we dropped her off at the elementary school by herself but she gave us a big hug and walked slowly onto the playground in search of a familiar face. Both Olivia and Max have teachers this year that we know well and who know of our family’s situation with Rudy so we’re certain they are in great hands for what could prove to be another wacky year of adjustment.
And then there is Rudy…our little goofball continues to charm with his ever-growing smile which is sporting TWO new teeth. He has worked hard to cut those teeth the past couple of weeks chewing on anything he could get his hand on. We were warned not to let pets chew on Rudy’s various tubes and cords to his equipment but we didn’t expect to have issues with Rudy doing the chewing…like there isn’t enough to keep an eye on!
Since our last post, Rudy saw the Endocrinologist and Immunologist in town. No new information emerged as a result of these visits…just initial consults to review his history and get Rudy on their books. There were some changes made to his feeding schedule and respiratory treatments that leave us with a few questions but, all in all, I think we’re on the right track with his care. We still don’t have a specific time sheduled for the Glenn…Rudy’s next appointment with the cardiologist is in early September so hopefully we’ll know more then. We continue to pray for physical growth and strength (especially for his lungs and muscles) and that Rudy would start to tolerate baby food. Oh my, speaking of food…I forgot to feed the poor boy his mid-morning bottle and it’s now time for lunch! I’ve gotta run…the fast pace of the school year has begun!
When I was a little girl, I got a TON of stomach aches…strangely occuring on Monday mornings before school and most severe at the end of holiday breaks or summer vacations! 🙂 I eventually outgrew the nervous-tummy attacks (when I graduated from college! Ha Ha) and haven’t given my strange childhood disease much thought since then until this morning when I woke up with those familiar nagging symptoms of “the nervous tummy”. It has been brewing for a week or so as I anticipated facing today but, to be honest, I’m really surprised by the way I’m feeling.
Today is the one-year anniversary of Rudy’s initial diagnosis at a routine ultrasound when I was 27 weeks pregnant. I actually expected to approach this significant date on our family’s calendar feeling deep gratitude and joy over the fact that Rudy is with us and that our family made it through what turned out to be the greatest series of challenges we’ve ever faced. The reality, though, is that I’m feeling pretty sad today…there’s a big cloud hanging overhead and that nervous tummy is just churning away. Ironically, Rudy has an appointment with his cardiologist today making the memory of our first meeting with Dr. Harake and the grim confirmation a year ago even more vivid.
Not being one to dwell on the negative and because there is so much to be thankful for and celebrate, I feel a little blind-sided by the heaviness and grief. I’m sure there are many layers to what I’m feeling today…but I think that as much as today signifies the amazing steps Rudy has made in his journey of survival and recovery; it is also a vivid reminder that he still has only half a heart, that, just like last year at this time, we have an open-heart surgery and all the unknowns associated with it ahead of us and that we still need to make the conscious effort to take life one day at a time.
This is a little tangential but…I sat on the couch yesterday evening with tears pouring down my face as I watched the news coverage of Laura Ling and Euna Lee being reunited with their families. I felt so deeply the relief that Laura’s mom must have experienced when she hugged her daughter after months of unimaginable worry and it dawned on me that that’s what’s missing…after all these months with Rudy, we haven’t had our “sigh of relief”…and given the nature of Rudy’s defect, not sure we ever will. Hmmm, I’ll think about that another day.
Note to self, though, if I had had the presence of mind or the energy to do so, I would have planned a trip to Knotts Berry Farm this week…there’s nothin’ like a Knotts Funnel Cake or two to distract you from the blues!!
Rudy had another appointment with his pediatrician yesterday and weighed in at 16lbs 7oz to which the doctor exclaimed “Rudy is getting closer to being on the growth chart!”. Woo – Hoo! In regards to “normal” baby stuff, things checked out fine…he got three immunization shots and Olivia got his lollipop. I have been delinquent in setting up appointments with the Immunologist and Endocrinologist in town and yesterday’s appointment reminded me of the pending authorizations so I came right home and got those appointments on the calendar. I don’t think there are specific concerns but because of Rudy’s history with immune deficiences and low thyroid function, it’s good to have follow-ups with these specialists…I have to admit, though, I grow weary of introducing Rudy and his medical history to so many new doctors…it feels like we’re spinning our wheels a bit filling out the same forms over and over and repeating the same information over and over for each new doctor’s records but I guess that’s part of “establishing a team”. Over time the doctors here in Santa Barbara will grow to know Rudy well and there will be security in that but for now, almost THREE months post-discharge, I still feel a little lost and scattered in the menagerie of Rudy’s care-management.
Rudy doesn’t seem any worse for the wear, though. He has been feeding well, smiling more and reaching for objects held out in front of him more and more. Our lazy days at home may be a little boring for me and the older kids, but Rudy sure loves ’em.
Rudy may be behind in many ways developmentally but no one can argue his stellar performance in the hair-growing department. After Dr. Rick accused us of blow-drying Rudy’s mane to get that frothy trademark look of his, I decided it was time to give the boy a real haircut. Wilson and Max didn’t have their first “big boy” haircuts until they were nearly 2 yrs. old…Rudy was way overdo at 9 months!!! So, with Rolf’s help holding the poor boy upright and still, the curls fell fast with every snip of my scissors. What emerged is a handsome boy looking well beyond his years (or months?). In addition, now that the rest of his hair is shorter, his bald spot in the back doesn’t look quite as obvious!
Another precious milestone under his belt!
Actually, there were TWO!!!
Lucky for us, Dr. Rick and his wife Dr. Susan were in town early this week and had time to stop by for dinner Monday evening. What fun it was to see them both and catch up while enjoying a summer BBQ rather than seeing Dr. Rick in the context of discussing Rudy’s medical condition bedside in the ICU. We tried hard not to pepper him with questions about work and the goings on at UCLA but it sounds like all are well. Although Rudy slept for a good bit of their visit, he did wake up long enough to study Dr. Rick’s face trying very hard to place him, I think. We were encouraged to hear Rick say that he thought Rudy had good color and appeared to be thriving at home. It’s SO FUN to have confirmation from someone who knows him so well!!! Rolf and I highly respect the professional relationship we have with Rudy’s medical team but we are also so very grateful for the emerging friendships within those professional boundaries…it sure helps to make the serious steps ahead in Rudy’s journey alot less intimidating!
Earlier on Monday, Rudy had therapy with Gwen and OT Chris. After the session, they assessed Rudy’s developmental level as that of a 4-month old. He’s definitely improving but we need to be prepared for the process to be a slow one. I found the information helpful…specifics to direct my prayer for Rudy in these weeks before the Glenn. The more he can master now the better but we also don’t want to overwork him…as always, a fine balance.
Rudy's Beat 