Mighty Oakes Update

Friends and family – good, happy weekend to you all.  As always, we hope you are cherishing time with your family this weekend.  We wanted to send an update to everyone on our precious Oakes and our fledgling foundation, but first Oakes.  The last update we gave you via email was just over 30 days ago as Oakes was fighting rejection of his new lungs and had put together a decent rally….

 

Overall, Oakes is pretty much where he was last we wrote to you all.  And that really is not the best news.  The doctors have been pointing out that, in their opinion, he has sort of “plateaued” overall.  Sure, he has a good day here or a good three days there, maybe even puts together a six good days in a row, but it’s inevitably followed up by a really bad day or two or a few days of struggling.  Becky and I are so focused on taking this voyage “one day at a time” that we sometimes struggle, I think, to see the forest through the trees.  Our good days with Oakes are days that we cherish and will be the days we will always remember with him, but they are sandwiched by not so good days.  And by the time you look back over the last four weeks, the last eight weeks or the ten weeks since his transplant, he’s not really improving as any of the doctors had hoped.

 

On September 28^th, we had what St. Louis Children’s Hospital calls a Care Conference.  This is a session that Becky and I can gain an audience with several of Oakes’ doctors so that we can get a comprehensive update on where we are, how we got here and where we’re going.  Beck and I were prepared for maybe not the most pleasant, uplifting tone and that’s essentially what we got.  Lots of hope, lots of “we’re going to try this”, lots of “we’re not going to do anything without consulting you first”, but it was pretty clear that the doctors were concerned about Oakes’ lack of significant recovery since transplant.  This is not the doctors’ fault; this is just the harsh reality of the situation and we wanted to hear the reality.

 

So I think the best way to bring you up to speed on where things are with the Mighty Oakes is to give you an update by organ/gland/vein and I’m going to list this in “roughly” the order of least significant issue to most significant, although it’s nothing more than my own view of things.

 

·         Thyroid

o   Also since our last update, they’ve discovered that Oakes has a hypoactive thyroid.

o   They’re not sure what impact this is having on the rest of his issues, but they’re trying to treat it with medication, but these meds will take weeks before they start to help.

o   The doctors believe that this thyroid condition is impacting the left side of his heart (see below).

·         Trachea

o   As you may recall, Oakes had surgery on his trachea during his first open-heart surgery on 3/22/11. 

o   Since that time, it’s caused relatively few direct issues, but there is a theory that it may have indirectly impacted his bronchial tubes (see below).

·         Pulmonary Arteries

o   Since our last update, Oakes had another trip to his favorite cath lab to see Dr. Murphy.

o   There was concern his pulmonary arteries were narrowing based on some echocardiograms the docs had performed.

o   After some ballooning and other tests, Dr. Murphy decided to place three stents in Oakes’ pulmonary arteries, essentially right at the location where the cadaver vessel was inserted during his open-heart surgery.

o   These stents really helped the blood flows and pressures throughout the heart.

·         Lungs

o   I was golfing in a customer event in New Jersey on September 15^th when Becky called me to tell me that Oakes was no longer rejecting his lungs.  As I hung up with tears in my eyes and starting to choke up as I told my golf mates, I looked right down and saw a big, fat acorn from what had to be a mighty oak tree – it will forever stay in my golf bag as a reminder of that moment and Oakes’ strength and determination.

o   Rejection can come and go and comes in various forms.  The doctors describe him today as “recovering from his rejection”, but hurdles remain.  His antibody levels continue to fluctuate from blood test to blood test and his doctors are struggling to understand precisely what it means.

o   The doctors reiterated that Oakes’ situation is so different and new that there is just not any research that exists to tell them what to expect or exactly how to treat it – they are essentially writing the book for all those little Oakesies down the road.

·         Kidneys

o   Around the time of the Care Conference, we received a visit from the kidney doctors. 

o   The message was stunning and crushing – Oakes had kidney damage that appeared to be irreversible, which meant dialysis and possibly kidney transplant was in the future.

o   Oakes heard this, peed off hundreds of milliliters of fluids the following day and gave new hope that the damage was reversible or not as significant as previously feared.

o   They will continue to very closely monitor Oakes’ kidney via blood tests.

o   Oakes probably wouldn’t be a candidate for a kidney transplant until he is at least one and, even then, he’d probably have to be past the issues he is currently dealing with.

·         Heart

o   As mentioned above, the doctors believe Oakes’ hypoactive thyroid is causing stress to the left side of his heart, creating higher blood pressure in that side of the heart.

o   Additionally, the high blood pressure created from the narrowing of his pulmonary arteries (mentioned above) has caused the right side of his heart to tighten up.  Once the stents were inserted, they had hoped that this would alleviate the pressure.

o   The lower pressure would then increase smooth blood flow through his heart, helping his kidneys function more normally which would then help Oakes dump a lot of the fluids that he has been retaining in his belly lately.

o   It’s been about three weeks since this cath procedure and it’s our guess that it hasn’t helped as much as we had hoped since he’s still retaining fluids, but we won’t know for sure until they take him back to the cath lab to check pressures and, right now, they don’t want to put him through that, thinking he may not be able to tolerate it yet.

·         Bronchial tubes

o   And now, the bronchial tubes….these are the airways which start at the bottom of the trachea and go to the lungs, but it’s also where they attached the new lungs to Oakes’ body.

o   There has been concern for weeks that these bronchial tubes were narrowed and Oakes has had four trips to the operating room to dilate the tubes.  Dr. Huddleston suggested that it could take six or eight dilations before the tubes stay more open. 

o   There is a theory that this narrowing of the bronchial tubes “could” be related to Oakes’ tracheal condition – complete tracheal rings – which was operated on back in March.

o   On Oakes’ last trip to the OR, this past Wednesday, to dilate the bronchus, Dr. H thought that both airways looked fine and there was not really much narrowing.  This was a modest surprise.

o   If you’ve kept up with the blog, you’ll know that Oakes has been having these “fits” since the transplant where his oxygen saturation levels plummet, his heart rate increases and his CO2 levels increase.

o   They are now theorizing that he is having “dynamic compression” of his bronchial airways meaning that the significant narrowing is really only occurring when he has these fits, not when he is resting peacefully.

o   He has these fits, typically, when we move him around for physical or respiratory therapy or take an x-ray or change his diaper, so it’s not like it’s an infrequent occasion.  But the problem then, is that we have to keep him on the paralytic medicine and heavily sedated so that he doesn’t get ticked off because, when he does, his numbers drop and he goes to a bad place.

o   So how do you fix dynamic compression of his bronchial tubes?  The better question is DO YOU fix it?  Is it worth it?  If you decide to fix it, the only way we know how at this point is with stents.  Well, with stents comes other issues and the fact that they will be there for good and that he will grow out of them.  Plus, his right bronchial tube is so short, it wouldn’t support a stent.  So then the question is, how much time does a stent on his left bronch buy Oakes and at what cost?  Questions no one has answers for right now.

 

To complicate all of this, we think Oakes caught a bug this weekend and has been fighting a fever.  But that’s just a pebble in the road at this point.  The larger, more challenging issue is, have we reached a point of diminishing returns here?  Are we putting Oakes through too much, considering the hell he has been through already?  Is he trying to tell us he has had enough?  Or do we continue to hold on to that sliver of hope that he could possibly come home at some point.

 

The entire team here at the hospital, with all of their knowledge, experience and research, unanimously agree with the following:

 

-          Oakes has no chance to live to adulthood.

-          Oakes is extremely unlikely to make it to adolescence.

-          The odds are stacked very high against Oakes ever coming home.

-          The longer Oakes is in the CICU, the less likely it is he ever gets out of the CICU.

-          He’s likely to be ventilated for many more months, no matter what type of progress he makes.

-          Although he has good days, where his numbers look good, he requires significant oxygen support from the vent, a large amount of sedation medication and, most of the time nowadays, a paralytic drug to keep him comfortable.  So is this really “progress”?  Are these really “good” days considering what it takes to get his numbers decent?

 

Becky and I are, understandably, struggling with all of this, as any parent would.  And while we have not at all given up (and how can any parent really “give up” on their baby?), we are trying to come to grips, as best we can, with the reality of Oakes’ situation.  Fortunately, Becky and I are blessed to have each other to lean on (or at least I am blessed to have her to lean on).  My wife’s strength throughout all of this has been incomprehensible!  She is literally at the hospital every single day for hours and hours.  She walks down the CICU hallway and it takes her half an hour because she ends up stopping every few feet to “chit chat”, as she calls it, with all the doctors and nurses on the floor.   She knows their names, she knows what’s going on in their lives and they love her.  I always ask who Oakes’ nurse is on a particular day and she’ll tell me.  Half the time, I recognize the name and half of that time, I even know who it is.  She knows every single face and every single name.  I have work to distract me throughout the week but Beck is right there on the frontlines every day no matter what, excited by every high and devastated by every low.  Our lives have been the most emotionally intense rollercoaster anyone can imagine the last few months and we would have crashed at the bottom of one of those sudden plunges long ago without her strength.  She is amazing and I don’t know how she does it. 

 

And of course, we have been blessed with a tremendous group of loved ones and friends who are there always asking how they can help.  We are truly asked, at least every single day, how someone can help.  And while the meals on wheels a  few months ago was so nice and certainly spoiled us, there’s really nothing any of you can do to help us other than continue to say prayers and send positive thoughts to our family and the families of our friends who have had sons and daughters pass away during our seven months in the CICU here, like Ronan and Elizabeth and Noah.

 

And I guess there’s one more way we would, very humbly, ask that you help – playing a role in The Mighty Oakes Heart Foundation.  We feel like this can be Oakes’ legacy – to inspire the founding of an organization built to help other families who have gone through or will go through what we have gone through the last seven months.  Again, we are extremely fortunate to have no financial hardships as a result of this ordeal, but we know others who have not been so fortunate.  And we want to fund research and development around congenital heart defects so that the next “Oakes” who comes through this world can have that much better hope of getting home to his parents and family.  And we also want to help all of the people who helped us at St. Louis Children’s Hospital – the nurses, the staff and all of the babies in the CICU – by donating things like swings, socks, toys, DVDs and many other items that the CICU is either short on or just does not have today.

 

Our website, although still in development, is a great place to learn more about what we want to do and we’ll be raising a ton of money on November 11^th and 12^th here in St. Louis at the Planting A Seed Dinner-Auction.  If you have NOT received an invitation by mail yet, please let me know and I’ll make sure you get one.  Our dear friends, John and Ellen Moriarty, have organized the events with a huge support group behind them.  They have lined up some awesome auction items including the cutest, most lovable puppy dog, elite club tickets to many sporting events, exotic trips to faraway fun places, unique autographed memorabilia, fun gift baskets from companies you all love, exclusive behind-the-scenes VIP events and tours and so much more.  And certainly, we can never have enough items to auction, so if you or someone you know has an “in” with a sports franchise or a vacation home or a business owner who would like to support our charity, please have them give me a call and I can fill them in on all of our plans and how they can participate, if they are so inclined. 

 

One new fundraiser on our website is our “Mighty Oakes Slideshow,” found under the “How You Can Help” section.  This is being led by some of Becky’s family and friends, namely her mom, Connie, and her brother, Phill, and his wife Kat.  Targeted for those who live out of town or those who, for whatever reason, may not be able to make the dinner-auction event, we are asking for fun, creative pictures of you and/or your family with an oak tree and/or acorns.  On the picture, you can write a note to Oakes or your favorite inspirational message or a note about congenital heart defects or something else inspiring and then include your name and location if you have room.  We are asking for just a $25 donation so that we can develop a wonderful slideshow which we can share on various social media sites and our own website to help spread the word about The Mighty Oakes Heart Foundation.  We already have a few in-house and this will be an awesome slide show that Kat’s sister, Nancy, will put together.

 

Finally, I’d be remiss if I didn’t mention the Cardinals, especially to several of you Phillies fans, who I know are on this email distro!  Oakes was wearing a Cardinals bib most of the day yesterday and had a tiny, custom-made bat in his bed all game long.  The bat was a gift from the Rose family.  It was engraved “The Mighty Oakes.  Keep Swinging For The Fences.”  I believe the Cardinals have been inspired by the Oakes man and his never-quit attitude has rubbed off on them.  Therefore, I have attached a classic picture of The Mighty Oakes just a couple hours before the first pitch last night (thanks to nurse Andrew for the artwork!).  And thanks so much to everyone for all of your love.

 

Greg, Becky, Isla P. and Mighty Oakes

www.babyortyl.blogspot.com

www.mightyoakes.org