Good evening, friends and family. Hope you are all having a great Labor Day weekend. It’s been 39 days since we last sent out an email. We’ve been trying to keep our blog updated almost daily and we’ve noticed many people going there to check in, but realize not everyone does, so an email update was long overdue! There is certainly a lot to update you on. I tried to break it down into sections to make it easier to read.
Last we talked, Oakes had just had his transplant and was rejecting his lungs very aggressively, which was not good at all. This was the second time in his six months on earth that we were essentially told he wasn’t going to make it and all of our family filtered in from across the country for support. Of course, he rallied. He rallied from a pretty dreadful place on that July 29th when we sent the last email update. Oakes didn’t quite put on a cruise missile display, but he rallied so impressively over the course of that subsequent week that his nurse said she was “shocked and stunned.” I was shocked and stunned to hear her actually say that in front of me, but it did put perspective on just how bad things were near the end of July.
I’ll try to spare you all of the ups and downs of the last five weeks or so, but we assure you, there have been many, many, many ups and just as many downs. It’s been an emotional rollercoaster that we hope none of you ever have to deal with. So what is the latest?
Oakes Fight Against Lung Rejection
Things were looking bleak as recently as August 23rd. It was on that day that Dr. Gazit, one of the CICU doctors, pulled us into a private room and told us that Oakes’ recovery from his lung rejection had “plateaued.” Dr. Gazit had based his opinion on the fact that they had completed 20 sessions of plasmapheresis (if you recall, that was the blood transfusion process Oakes went through) and three doses of rituximab (a drug that attacks the proteins which are rejecting the lungs) and that, in spite of this, all of the tests at that time showed that the rejection was at the same levels they always were. Utilizing plasmapheresis and rituximab on a five month old baby who had two heart repairs and a lung transplant was considered “out there” as far as treatments go and Dr. Gazit mentioned another one, radiation, that would be even further “out there.” They weren’t even sure if it had ever been used in this situation, but since it was really the last hope in fighting the rejection, the staff decided to move toward the path of a five-week, ten-session dose of radiation which would, hopefully, kill ALL of Oakes’ antibodies in the hopes that once they started to come back, they would recognize the lungs as “friendly” lungs and not reject. Dr. Gazit said that if this didn’t work, things would not be good and that there was truly nothing else left to try.
Well, Oakes didn’t get his moniker for no reason! Literally, the following day, Oakes miraculously started to improve. I left to go on a trip to Dallas on the morning of August 24th and Oakes was being paralyzed off and on throughout the day because he was fighting his vent and struggling to breathe and he was incredibly bloated, holding massive amounts of liquid (actually chyle from his lymphatic system) in his abdomen and he just did not look like our Oakes. By the time I got back on August 26th, he was a different baby. He was requiring no paralytic, he was smiling and flirting with the nurses and he had lost most of the extra fluids and was peeing normal. It was incredible and everyone on the CICU floor couldn’t believe how quickly he improved with essentially no treatments. The theory is that his body may just have needed some time for the plasmapheresis and rituximab to begin to work. He had not had either treatment for 2-3 days by the 24th, which led to that theory being adopted.
They completed a bronchial exam on Oakes on August 30th (last Tuesday) and took a biopsy of the new lungs which showed several improvements. We were all expecting it to show that there was no rejection taking place because of how much he had improved, but alas, the tests showed there was still some rejection, at the antibody level, taking place. We were told that although the rejection still seemed present, the most important thing was lung FUNCTIONALITY. And there was zero doubt that his lung functionality had dramatically, almost miraculously, improved. So now what?
Radiation has been put on hold indefinitely because of the vast improvements Oakes has made, which is a good thing obviously. But the last couple of days, the doctors started slipping in the idea of a tracheotomy during updates with us. And by yesterday, they had suggested that we proceed with it. It never ends! So apparently, the tracheotomy will allow Oakes’ recovery to quicken in a variety of ways. It gets the tube out of his mouth and throat, which is annoying and sometimes the reason he needs to be more sedated. It also makes it much easier to put him on and off and back on the ventilator if need be. Further, we can more aggressively perform physical therapy on Oakes – give him tummy time (of which he’s had virtually none since birth), get him sitting up, strengthening his muscles, etc. And, we will get to hold him as much as we want (although there will be a long line for that).
The tracheotomy will take place tomorrow afternoon. Yes, another surgery to add to his resume. They will make a small incision at the front, bottom of his throat and make a similar incision at the top of his trachea and will set a tube from the trachea out through the throat incision. From there, he can, very easily, be hooked up to the vent very securely without risk of accidental extubation. Frankly, the idea of a tracheotomy scared me, mostly because of my ignorance around what it is and how it works, but the staff was great today in getting us comfortable with all of it, so we’ve decided to move forward. We cannot wait to hold that little guy and get him sitting up! Oh, the trach should not be a long-term or life-long thing, but will be there for quite a while until everyone is sure he won’t need assistance with his lungs. Also, they don’t anticipate any issues considering that his trachea has previously been surgically repaired.
Tomorrow, they are also removing his pharesis catheter which the doctors believe will improve his kidney and liver function which has been not optimal the last few weeks, so that will be a nice improvement as well. If you add all of this up, and all goes according to plan (which it hasn’t done yet!), the doctors believe that it is realistic that Oakes could, COULD possibly, MAYBE come home by the end of September. We were shocked to hear this and it overwhelmed us to the point of tears because we’ve been told three times now that he probably wasn’t ever coming home again. Yes, Oakes continues to live up to his moniker…..
Oakes’ Girlfriend, Elizabeth
Those who follow the blog know that Oakes has a girlfriend (and neighbor), Elizabeth Butz. Elizabeth was born a few months ago with her twin sister, Maggie. Maggie was physiologically perfect while Elizabeth was born without one lung (amongst other issues). She has been fighting hard for a long time and she and Oakes have been inspiring each other as they sit side by side in adjacent CICU rooms. We have grown to be friends with Elizabeth’s parents, Chrissy and Dave. Becky has told a dozen stories about Elizabeth on the blog, but one of the fun ones is that we always joke with Chrissy and Dave that when Oakes and Elizabeth are paralyzed or sleeping or going through surgery, they go off to their “happy place” and have fun together. They chill out on the beach together or hold hands and run through a meadow somewhere. It helps comfort us knowing that each of them has a friend and soulmate to keep their minds preoccupied. Well, Elizabeth passed away last night. It is absolutely crushing to me and Becky, so I cannot imagine what Dave and Chrissy are going through. Becky was there all day yesterday while the Butz’s were spending their last hours together and she took a lot of pictures of the three of them. Elizabeth wrote a card to Oakes that I cannot even think about without breaking down, but rest assured, Oakes and Elizabeth will be holding hands and running through a field again someday. The void on the 7th floor today was palpable, but we still felt the love. We love you Elizabeth, Maggie, Chrissy and Dave.
The Mighty Oakes Heart Foundation
So it is with a very heavy heart that we officially announce the founding of The Mighty Oakes Heart Foundation. We have talked about it many times before, but it is official. We filed paperwork with the state, received our non-profit status a few weeks ago, set up a Board of Directors, are working on a logo and, thanks to Becky’s brother, Phill, we have a web presence at www.mightyoakes.org. We invite you all to check it out. It is far from a finished product, but a hell of a start considering everything going on. The Board of Directors will include five people at the start – Becky Ortyl, our friend Ellen Moriarty, Oakes’ cardiologist Dr. Caroline Lee, the CEO of my company Rich Ruben and another friend of ours David Leeds. We are working on the tedious tax-exempt filing now which should take a few months to finalize. All donations made between now and our final tax-exempt approval will be tax-exempt once our approval takes place. We will be providing receipts to any donations, so just keep the receipt and deduct once you have heard we have our tax-exempt status finalized.
I think it’s important to reiterate WHY we started the foundation. When St. Louis Children’s Hospital advised us to do some fundraising “just in case”, Becky and I talked about it and concluded that raising a few thousand dollars for us in case I lost my job or my insurance dropped us was one thing, but we wanted to do something “MIGHTY” – something that would create a legacy for our little Oakesie and something that could help families less fortunate than ours. We also passionately wanted to help in the research of congenital heart defects – the most common birth defect in the US. Nearly twice as many children die from congenital heart defects each year than all the pediatric cancers combined yet the funding for CHD research is 20% of pediatric cancer research funding, so we wanted to help those who are researching better ways to diagnose and treat CHDs. We hope and pray that our family will never have to use any of the funds raised by the foundation, but we have experienced how difficult dealing with CHDs can be and we want to help make it easier on families who may need assistance while they go through this ordeal. And we want those families to be inspired by our Mighty Oakes. Dr. Lee has told us several stories of families really needing help and we cannot wait to get to the point where we are able to help them! Hopefully the foundation will be here much longer than any of us and will create a lasting legacy and eternal inspiration in Oakes’ name.
We have even had our first fundraiser! My sister Shani, My Aunt Naa and my mom hosted a Charity Crop a week ago and raised more than they had ever imagined they would raise. We cannot thank them enough for all of the hard work they put into making that event such a success. I know for a fact they each put every single ounce of energy they had into the event and we are blessed to have them as our first official fundraiser!
We have many more events upcoming and the outpouring of love and emotion has been humbling for us. Here is a summary of other upcoming events (and again, we’re going to try to keep these updated on the website as best we can):
· The Planting A Seed Dinner Auction.
o Our friends, John and Ellen Moriarty, had the idea to throw a huge, one-time-only event to kickstart the foundation and help provide, hopefully, a great deal of funding out of the gate.
o On November 12th, here in St. Louis, we’ll be hosting a dinner auction at Sunset Country Club. Tickets are $100 per person and there is limited availability for this event, but remember, it’s a dinner auction, so if you don’t think you’ll be up for bidding on fun gift baskets, sporting event tickets, fun getaway trips and other more exciting auction items, this may not be where you want to spend your time – and I promise, promise, promise, there will be dozens of more events at all price levels in the next few months so don’t feel like if you miss this, you miss everything….there will be more!
o There is a small army of people helping the Moriartys make this event successful, but if you know of any unique items which you or someone close to you can provide – vacation home stays, autographed sports memorabilia, tickets to fun events w/some kind of behind the scenes access – please email Ellen Moriarty at email@example.com.
o The night will be so much fun – a cocktail reception, a silent auction, a great meal, a live auction and I’m sure many great stories and lots of happy tears.
o You can go on our website for more information.
· Very Important Donor (VID) Golf & Dinner.
o This is affiliated with the Dinner Auction, but will be the previous day, November 11th also at Sunset Country Club.
o With the goal being to raise a large amount of money to provide a base for the foundation long-term, John Moriarty is coordinating this event for those individuals (or companies) who can donate a minimum of $1k.
o This is obviously a lot of money and is not for everyone, but we’re hoping we can get a core group of folks and possibility a few companies to chip in to help make this “opening weekend” a success.
o For more information, you can go to our website or email John at firstname.lastname@example.org.
· Charity Run.
o Our friends, Adam and Suzanne Gabris, have decided to host a charity run at some point in the coming weeks as well. Date is to be determined.
o The Gabrises are runners, unlike Becky and, especially, unlike me, but I will somehow get my butt out there and do it! Hope that you guys can too!
o More details will be forthcoming and we will definitely advertise it on the website.
· Wine Tasting Event.
o Our friends at Dewey’s Pizza, our favorite pizza place with locations throughout Ohio and the St. Louis area, will be hosting a wine tasting event at the Webster Groves location some time in February 2012 with details still being worked out.
o There are a couple of surprises in store for this event which we’ll have to share later!
· Other events.
o Becky’s sisters have mentioned hosting events in D.C. and Tulsa (where they live), so those are in the works.
o We have a friend of a friend, who we have never met – Chris Diamond – who live in Chicago and she has decided to run a marathon and dedicate it to The Mighty Oakes Heart Foundation. She is working on a website (we’ll be linking her website to ours) and is aggressively lining up donations and even corporate “matching” donations. Reading her emails to us is so incredibly humbling – to think that Oakes has had this type of impact on people is just amazing and we couldn’t be more grateful. We cannot wait to get to know Chris and her family better!
o Golf tournament. I hope to have an annual golf tournament for the foundation, but it will have to wait until next year some time.
o I know I’m missing other events, so please don’t hate me if you mentioned one to us and I forgot to mention it here; I’ll make up for it later, promise!
As a treat, I’m including a few pictures that Becky took of our Mighty Oakes the last couple of days. Becky gave Oakesie a haircut a couple weeks back and, although he still has more hair than I do, he looks a lot like his papa! Enjoy! Also, if you haven’t ever gone to our blog, we’d love for you to go just once – we have a map that is keeping track of everyone who goes to the website and it’s fun to see the love for Oakes spread, literally, across the globe.
Please do check the blog for more frequent updates as I’m not sure when we’ll have the time to send another update, but obviously will send one when big changes occur. Becky’s blog posts are awesome to read, you can just feel the love for Oakes seeping through the computer; love it! We love you all and are blessed to have you all as friends.
Greg, Becky, Isla P. and Mighty Oakes