Friends and family, good afternoon. I hope you are all doing great and are all happy and healthy. It is crazy to say this, but it has been almost five and a half MONTHS since my last email update on 10/30/11. I made the mistake, I think, of assuming most of you were going to the blog to keep updated, but I’ve found out lately that’s not the case as many people were not aware of the latest with the Oakes. It’s totally my fault and I swear I have started this email five separate times and just haven’t finished it. It seems like years ago since last October and so, so, so much has happened since then, so I’ll jump right to it in my preferred bulletized way! If you’ve kept up with the blog, a lot of this might be old news.
· Mighty Oakes Heart Foundation. We had our inaugural Planting A Seed dinner-auction on November 10th and 11th here in St. Louis. It was a phenomenal success, mostly due to Ellen Moriarty’s leadership and dedication and her army of volunteer helpers. We had 175 attendees to the dinner-auction, we had 31 Very Important Donors (VIDs) and raised over $110k (!!!!) to help families coping with congenital heart defects. Yes, it was an amazing night, one of the most amazing, magical nights of our lives. Becky spoke to the crowd and gave a peek to her future in public speaking J. For most in attendance, her speech was the highlight of the night. She told the story of Oakes and how the foundation came to be and what we wanted it to grow into. She handled it with poise, character, emotion, sensitivity and amazing courage. We procrastinated endlessly in sending out the Thank You cards. I don’t even remember when they eventually went out, but it was a huge burden off of our shoulders when we put on the last stamp. Needless to say, we cannot thank everyone enough for their participation and support. We haven’t convinced Ellen to lead the event again this coming Fall, but we’re working on it!
o Pizza-Wine Dinner. A friend of ours who runs some pizza restaurants called Dewey’s Pizza decided to have the proceeds from their annual fundraiser go to MOHF in late January. We were able to raise $6,000 at the sold-out event and left me trying to figure out how I can find a job which consists of attending fundraiser dinners 7 nights a week! Special thanks to Adam Lee from Siduri Wines, who came in from Napa and totally ROCKED his job as emcee of the event, and four local restaurateurs/head chefs made specialty pizzas for everyone. It was a blast and got some publicity on one of the morning news shows here in St. Louis and an article in a foodie magazine as well - http://www.feaststl.com/online-exclusives/the-feed/article_996d9a5e-2cdc-11e1-8745-001a4bcf6878.html. Dewey’s is also donating a portion of their house wines through the summer…produced, of course, by Siduri Wines! Thank you Dewey’s and Siduri Wines (www.siduri.com).
o T-Shirts. We had some MOHF t-shirts made and have sold over 300 of them! Three of our four orders have sold out within days. Email us if you want one, they’re only $15. May need to order more to fulfill the next group of orders.
o Billiken Basketball Game. We had about 75 MOHF supporters in attendance to a St. Louis University basketball game. Our charity was given free tickets, everyone wore Mighty Oakes shirts and we were recognized during the game.
o *NEW* Fundraiser This Weekend! My good buddy, Kirby Koettker, is doing a half marathon on Sunday (my bday). He’s donating $10 for every minute under 2 hr & 30 minutes he runs this in. He’s been running them around 2:10 or so and has dedicated his training to Oakes and Mighty Oakes Heart Foundation. He is looking for pledges (either per minute under 2:30 or a flat donation) and will donate all of his earnings to MOHF! He crafted the note below, meant to be shared with you all:
§ My name is Eric “Kirby” Koettker and I, like many of you, am a friend of the Ortyl family. I met Greg in high school and was lucky enough to play baseball with him from the time I was 14 through my senior year in college, along the way of course I met Becky and soon found out what all of you know, what a wonderful person she truly is. However, the bond that I share with each of you that read this short message is this…we think and pray for Oakes Ortyl, his big sister Isla and the success of the Mighty Oakes Heart Foundation (M.O.H.F.) each and every day. I marvel, like you all, at the absolute commitment and steadfast dedication that Becky and Greg have shown not only to Mighty Oakes, but to all that have surrounded them in this ordeal, including other families who have gone or are going through the same or worse situations. I like many of you, have never met Oakes Ortyl, but through the blogs, messages and e-mails that Becky and Greg unselfishly provide I feel like I have met him; I know that someday I will met Oakes and be inspired all over again.
In the meantime, I wanted to provide anyone who is interested to help raise a few bucks for the M.O.H.F. I will be running in the “GO” ½ marathon in downtown ST. LOUIS on Sunday April 15 (Greg’s B-Day by the way). I have been training for this race for many months and it has been a huge physical and mental challenge for me. I do not mind saying that Oakes and his family are on my mind much of the time. I think about how the “struggle” that I am going through in my training and how it pales in comparison to what the “Mighty” one has faced.
So here is the sales pitch…I am going to donate $10 to the foundation for every minute I finish under 2 hrs. and 30 min. I wanted to invite all of you that may so be inclined to pledge an amount (however big or small) to the same accord. I will tell you that my goal is to finish around 2 hours, so you can have an idea what your total pledge amount might be. Please just e-mail or contact Greg or Becky back as to what you may like to do (even if is a fixed amount) and after the race (Sunday evening) I will send my finishing time to Greg so he can post it to the group.
I know this is rather informal, but if we can raise a few dollars and at the same time heighten our thoughts and prayers for Oakes, I think it is worth it.
Thank you in advance for your generosity.
Eric “Kirby” Koettker
· Where Is All The Money Going?
o Good question! The truth is most of it remains in the MOHF bank account. We have, on a very small level, helped two families who we have met at Children’s hospital. One, a great family from Wichita, KS, who was traveling back and forth for their son. Dad and mom were both working and students and, oh by the way, had their only child in a Cardiac ICU room several hours away. It was very tough on them so we helped with some transportation costs. We also helped a family from Tulsa with some expenditures they had associated with traveling to St. Louis. Also, within the next week or two, we are going to be using some of the dinner/auction funds to treat the hospital staff to weekly goodies. The staff at Children’s has been amazing and there’s no way we can ever thank them. The job they do is difficult and has to be emotionally (not to mention physically) draining and they have played such a huge role in helping us keep our sanity and we know they do the same for so many other families.
o As we get more organized (read: bring on more help!), we will be re-doubling our efforts to continue to identify families with heart defect children struggling to deal with the reality of their situation. This will get easier for us when Oakes gets home and our free time is not spent at the hospital.
· Oakes’ Health. In general, has had a good six months. Several issues remain, which include:
o Cardiac and Kidney function and fluid balance.
§ Good news – Oakes was weaned completely off of milrinone in late January. Milrinone is a heart medicine that is seemingly used with all CICU patients. It is a huge achievement for his heart to be working well enough that it does not need milrinone. Some heart patients go home on milrinone and stay on it for years. Huge news!
§ Bad news – For most of the end of 2011 and very early 2012, there was still not enough perfusion (delivery of blood) to Oakes’ kidneys. This is causing the kidneys to be injured. For a while, it was estimated that Oakes’ kidneys are operating at less than 50%. For a few days, late last year, Oakes was put on peritoneal dialysis. Going on dialysis was scary, but it was what he needed at the time. It tremendously helped his kidney function, so much so that they decided to stop the dialysis. Since then, there has been a lot of tinkering and tweaking with Oakes’ medications trying to find the right “fluid balance” – peeing enough to get off excess fluid, but not too much to dry him out.
§ The other big issue with too much fluid is that it puts tremendous pressure on his airways, which obviously causes him to struggle to breath. Every few weeks we seem to have a situation where he gets too much fluid and it sets him back a day or two, but we’re a lot further along today than 3-4 months ago when it was happening every day.
§ Beyond the perfusion issue, there is a theory that the cadaver conduit valve which was inserted back in May 2011 may have some leaking issues. They are running tests to monitor this. This is not terribly unexpected, but no one wants this issue to worsen as that will likely involve another open-heart surgery.
o His Airways (Bronchus).
§ As some of you may recall going back 8 or 9 months now, Oakes, along with his congenital heart defect, has had stenosis or narrowing of his pulmonary arteries (fixed by stents) and pulmonary veins (fixed by a lung transplant). Then later last year, in the fall timeframe, we discovered that Oakes was suffering from bronchial stenosis or the narrowing of his little airways that go to the lungs. Normal stents were not a great option because they were only a temporary solution as they could not be removed once he outgrew them, which was inevitable within just a few months time.
§ Late in the year, the idea of biodegradable stents was brought to our attention. Long story short, we had received approval from the FDA (since they were not FDA-approved) and we had Children’s Hospital approve the surgery and even had our health insurance approve the coverage. We ordered biodegradable stents manufactured in the Czech Republic and began to schedule an Austrian doctor to travel to St. Louis to insert them into Oakes’ airways. They had never been used in a baby in the US and had only been used by a dozen or two babies in the UK, but only in their trachea, not their bronchus. But most of the experts had concluded that this was a “relatively” low risk procedure to buy Oakes some time to grow out of the need for a more invasive surgery. The idea was to insert the stents, fifteen weeks or so later, they would begin to biodegrade and we’d throw in another set and so on until he was big enough that he didn’t need the help.
§ Well, one day in February after a trip to the catheter lab, Dr. Eghtesady came by and surprisingly told us that Oakes’ bronchus were had opened up much more than his last trip to the cath lab. Oakes was growing. His little bones and little veins and yes, his bronchus, were all growing…..so much so that he apparently had outgrown the need for the biodegradable stents! We were in awe, again. How could he keep outdoing himself? We were thrilled. That was really the corner that we needed to turn…..
o Lung Rejection.
§ This is an incredible part of Oakes’ story that we shake our head at every day – Oakes is still accepting his lungs! Oakes has been having fevers from time to time and for a while, we all thought it had something to do with rejection. As you’ll see later though, it wasn’t rejection at all. But, we live with the reality that history tells us he will begin to reject his lungs again, at some point.
o G-Tube.
§ Since Oakes’ lung transplant in July, he has been fed through a feeding tube going in to his nose. Over time, these feeding tubes tend to irritate the wall of the esophagus. Not to mention, the tape to keep the feeding tube in place covers up both of his cute little cheeks. So a few weeks ago, the docs broached the topic of a g-tube. Again, this was a scary subject to discuss and acknowledge, but we very quickly realized the benefits outweighed the negatives. So early this year, he went in for a fairly major surgery. They opened his belly up and, in total layman’s terms, they tightened the area near the top of his stomach to prevent acid reflux and loosened the bottom of his stomach so that the tightening of the top wouldn’t result in everything getting clogged in his belly. Ironically, the scar from this surgery looks the worst of his three big ones (the other two from his open heart surgeries and his lung transplant). It’s a scar right from the bottom of his open heart surgery scar to below his belly button.
§ The G-Tube surgery went fine and now Oakes receives all of his medications and food through this tube.
o His Head.
§ We noticed many months ago that Oakes’ poor head was misshapen due to months and months of laying in a bed. The doctors decided to have a helmet made for him. So for the last 3-4 months, Oakes has been wearing a cute, royal blue, plastic helmet. It is the cutest thing to see his chubby cheeks with that helmet, looking like an old-school football player from the 40s. Becky, of course, decided to jazz it up, so she glued a shark fin on the top of it.
§ The helmet really helped and his head almost looks normal. He’s actually outgrown his first helmet, so we’re waiting for his new one to be made.
o Our Little Junkie.
§ The scariest moments of the last 3-4 months have been Oakes’ many fevers. Between October and January, he would spike minor fevers, 100 or 102. We would culture his trach, his nose, his this, his that, trying to find an infection causing the fevers. We’ve really never found anything at all, so everyone’s been a bit befuddled as to why he’s having these non-infection-related fevers.
§ On the morning of his first birthday, we got a call at 2:30am that Oakes spiked a fever to 108. Yes, 108. He was in danger of having a seizure or something else catastrophic. Somehow, against the odds, he got through it after being wrapped in ice blankets for a few hours and after a CAT scan we discovered that the fever did not do any permanent damage. So that was good, but it was bad that we had no strong indication of what was causing these fevers. It wasn’t getting a lot of attention at 100 or 102, but 108 definitely got everyone’s attention.
§ The theory now is that these fevers are resulting from Oakes withdrawing from his narcotics. He’s essentially been on a couple or many narcotics his entire life, so weaning these very strong, very addictive narcotics has been tough on his little body. So we have lowered the pace at which they are weaning his last narcotic, a drug called delotid. He’s just a few weeks from weaning off of it entirely, barring any setbacks.
o His Demeanor.
§ Lately, we have been so excited to see Oakes’ little personality poking through all of the narcotics and sedatives he has been on. He has been smiley, giggling at times, happy, very aware of who is around and even interactive with toys that we hold up to him.
§ His favorite thing to do is to chew on his hands. He’s almost always doing this. The other day he almost accidentally grabbed my pinky and put it in his mouth and started rubbing it against his teeth. It hurt to the point that I had to pull my pinky back after a few seconds, so I don’t know how the heck his fingers have survived a year of this!
§ He loves his mama and sister and definitely recognizes us when we are there. He also recognizes his nurses. It’s funny because he’ll look at them out of the corner of his eye when they’re around. He’s always wondering when the next shot or trach tie change is going to happen because these are his least favorite times of the day.
§ Oakes has grown like a weed too. Not in relation to a normal baby, but compared to his earlier growth rate.
· Other Fun Stuff.
o Oakes Birthday. As I said, Oakesie turned one year old on March 10th. It seems like ten years ago, but everyone was super excited as the day approached. The hospital staff threw a huge bash for Oakes including a custom-made Super Oakes logo cake! SLCH PR department got a local Fox station excited about telling Oakes’ story which resulted in the following clip. Of course, I’m smart enough to know that no one wants to see my mug on TV, so Becky handled the interview with her usual elegance and class while my main spot in the story consisted of a virtual billboard, showing off the Mighty Oakes logo t-shirt across my man-boobed chest. It’s not hard to pick out… http://fox2now.com/2012/03/09/baby-hospitalized-since-birth-celebrates-first-birthday/ .
o Yvonne. Oakes favorite nurse, Yvonne Renick, was featured in the monthly newsletter that St. Louis Children’s Hospital publishes. Of course, her topic was her favorite patient. http://fromthebedside.org/2012/03/12/the-mighty-oakes-touches-the-life-of-his-nurse/ .
· So What’s Next?
o Well, another good question. We were told we thought we could get Oakes home by Christmas, then by February, then by his birthday and we’re now hearing sometime in May. My own personal feeling is that it will be sometime in the next 2-3 months. But clearly, the fact that his airways appear to be stable, more stable than at any other point in his life and the fact that he is off milrinone and is now on a simple “home vent” that he can literally go home with, his days in the hospital appear, APPEAR to be numbered.
o Barring any setbacks we are hoping to have our little man home before summer and I can’t even begin to articulate the emotions we are going to have checking out of the hospital. At the same time I type this, I quickly realize that although we have come such a long way, we have many hurdles yet to overcome. We’ve been close to home before, so we will continue to do the only damned thing that has kept us sane throughout this process – lean on each other and our family and friends as we simply take one hour at a time each day.
As I always lamely try to do at the end of these emails, I want to thank you all for your emails, notes, prayers, thoughts and support. Please do not think it ever goes unnoticed. Our lives are crazy, but we never ever take for granted how blessed we are with all of you around us. We hear every word of encouragement and appreciate every question about Oakes and his condition.
I hope I don’t go another six months before I send another update, but please check into the blog if you’re in need of an update. In the meantime, I’ve attached a couple pictures from just this past Easter weekend. Oakes recently was able to go to the rooftop garden at Children’s and is now scheduled to make that trip three days a week – a far cry from a few months ago when it took special permission and a staff of six to go just one time!
Anyway, I hope my next email will have to do with the struggle of adapting to a homebound Oakes!
Much health, happiness and love to you all,
Greg, Becky, Isla P. and Mighty Oakes
www.babyortyl.blogspot.com
www.mightyoakes.org
