Mighty Oakes Update

Good evening friends and family!  We thought we’d share a quick update for everyone as we head into November as it’s been just over three weeks since our last one.  I have to start this update with some news about our Mighty Oakes Heart Foundation.  I normally leave it until the end, but have to move it to the top of the list tonight.

 

We are less than two weeks away from our hallmark fundraising event here in St. Louis – the Planting A Seed Dinner-Auction.  We would love for all of our friends and family to figure out a way to participate and we’ve tried to set it up so that there are many different ways to participate at various donation levels, so I wanted to detail them here since I’m not sure everyone is aware of them all:

 

1.       Slideshow ($25).  Via our website, www.mightyoakes.org, we are asking for a picture of you and/or your family in front of an oak tree or with acorns or something else you feel is appropriate to show your support for our mighty little Oakes and other children who suffer from congenital heart defects.  We’d even love to see you hold up a sign in the picture with an inspirational message and maybe where you live.  We are asking for just a $25 donation along with your picture and we will create a promotional slideshow to be viewed on our website and on YouTube to drive further awareness of our foundation.  We have about 20 photos submitted so far and we’re hoping for twice that many some time at the end of this week so we have enough for the Nov 12^th event.

2.       Planting A Seed Dinner-Auction ($100-200).  RSVPs are due THIS WEEK!  Please send them in positive or negative.  We have just over 100 attending so far, but hoping to at least double that total in this final week so if you know of folks who would be interested, please forward them an invite, which I have attached in soft copy.  Among the items up for auction are an 8-week old yellow lab, a one week stay in St. Martin in the Caribbean, a one week stay in countryside estate outside of Amsterdam, Holland, a one week stay in Destin condo, all inclusive suite tickets in Chicago for Blues game, golf trip to Tulsa to play the famous Southern Hills Country Club, free house listing from real estate agent, a guided fishing trip, golf outings at various local golf courses, tickets to several sporting events, autographed jerseys and balls, gift baskets from all sorts of your favorite stores, liquor & wine packages, gift cards and much, much more. 

3.       Advertising In Auction Brochure ($25-$50-$100).  These will be the brochures we’re handing out to all auction attendees which will provide descriptions of all of the items up for bid.  This is a chance to advertise to those 100 or 200 people who have paid $100 per head as they enjoy dinner and the auction.  I have attached the brochure advertisement sign-up sheet if you’re interested.

4.       Very Important Donor (VID - $1000).  We have 20 VIDs signed up for golf and dinner on Nov 11^th, so if you or maybe someone you know or even your company would like to make a huge impact to the launch of our donation, please consider the VID program.  We will be sure to mention our VIDs prominently on our website.  I’ve attached info for this as well.

5.       Donate Items For Auction (??).  If you are interested in donating an item or, again, if your company may want to participate, just send me a note.

6.       Online Auction (??).  For those of you who cannot attend live for whatever reason, we will be putting several items on an online auction website so that anyone can go and enjoy bidding on some of the awesome items we have for the auction!  I’ll be sure to send out information and a link later on.

 

We are so excited for this event and cannot thank the dozens of volunteers, led by Ellen Moriarty, for all of the amazing work they have done to make this event a success!  The outpouring of support for our upstart foundation has been so incredibly humbling, but also very inspiring to us emboldening us to do whatever we can to help other families dealing with congenital heart defects.  Thanks to everyone who has helped so far.  It will be an unforgettable, first-class night with surprises for everyone.  We’re hoping to have in attendance the first family that our foundation will help along with some doctors and nurses from St. Louis Children’s Hospital.

 

And on to Oakes….

 

He has continued to have some good days and some not so good days.  Of late, the good have outnumbered the bad.  He has been off of his paralytic medicine for most of the last three weeks or so which has allowed me, Becky and Isla to interact with him like we haven’t in months.  It has been so much fun!  We have had some great photo sessions, which I know Becky has shared on her blog quite a bit. 

 

There are four big issues we’re dealing with right now.

 

1.       Lung rejection.  In a most miraculous turn of events, all of the tests now show that Oakes is no longer rejecting his new lungs.  This has been stunning considering where we were a month ago – going through chemo and other exotic drug cocktails to combat the rejection.  This is great, great news.

2.       Fevers.  Oakes has had fevers about once a day the last few days, including a 104 temp which raised his heart rate to 220 beats per minute, more than double his “usual” rate.  The doctors have been keeping a close eye on him and have a couple theories on the source of the fevers, which they hope to track down here this week.  One source could be an infection of his Broviac catheter which has been in him for about four months.  They may have to remove it, wait a week and then reinsert it.  Fairly routine considering what he’s been through.

3.       Bronchus tubes.  These are the tubes which we’ve known for quite some time are narrower than they should be.  Oakes has been to the OR four times to have those tubes balloon dilated.  His left side has started to open up and stay open, while his right side still needs some work.  It’s critical that we get this under control before we start to address the more critical issue (#4 below).  Once we can get the airways more open, Oakes can be weaned further off the vent and get stronger and more stable before his heart is addressed.

4.       Right atrium of the heart.  The right side of Oakes heart has been taking a beating for months and continues to be “stiff” from the extra pumping it is doing vs. the left side.  It’s been working about twice as hard as the left side since there continues to be pressure issues pumping blood through the heart.  The most likely cause of this is due to the truncus arteriosus heart defect that Oakes was born with.  He had a new vessel inserted into his heart which created a pulmonary artery (with truncus, you are born without one).  Well, apparently the vessel that was actually inserted two different times appears to be malfunctioning and the only fix is likely another open-heart surgery.  This isn’t an option until we can get more stability in the bronchus tubes, # 3 above.

 

A lot going on, but we are blessed to have spent so many great days with our Oakes lately.  These are the days we will never, ever forget. 

 

I have attached a great photo of Oakes from about 3:30am Saturday morning.  Nurse Andy had prepared (but not shown!) a new NIRS sticker, hoping that the Cardinals game turned out the right way Friday night.  It did….and Oakes basked in victory knowing he had sprinkled the team with some of the amazing magic he seems to have a monopoly on!

We love you all.

 

Greg, Becky, Isla P. & Mighty Oakes

www.mightyoakes.org

www.babyortyl.blogspot.com