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

Thursday Night Update

Oakes' ballooning went well the other day. Nothing exciting or out of the ordinary to report. Pretty much boring all around. Oakes is now unparalyzed and moving around, smiling and sucking his thumb like he was over the weekend. Today, Oakes took lots of little cat naps, listened to nursery rhymes, had some physical therapy, gazed at his mobile, read books with Momma, then had a brief but loving trip to Momma's arms. At the end of the day, Oakes' vent was weaned a bit and so far his numbers and gases look great. Dr. Oren is on today and he said that they are hopeful that they can wean his vent some more over the weekend, and then they will start to wean some of his meds.

Dr. Oren also shared that all of Oakes' test results from last week are in. The DSA test that tests the antibody levels are still trending down, which we had anticipated, but still are very thankful for. The AMAZING news was that the test that is done to detect that sticky and annoying Compliment #5 came back NEGATIVE! This is a first, and SO very exciting.

Before I headed home for the day we took a few more Halloween pics, and here they are:

You can't deny that he is pretty magical!

Astronaut Oakes Ortyl...
Going where few babies have gone before! (with a thumb in his mouth!)

One of Oakes' biggest fans, and super fantastic Pulmonologist, Dr. Michelson.

Our little angel.

And of course, since so many have fallen in love with him....Cupid!

........... ........... ........... ........... ........... ........... ........... ...........

So, good news, silly pics, and here is just normal baby stuff that makes me SO happy...

Two new chompers!

Garden photos!

Our garden photos came in the mail this afternoon. 16 beautiful images, and here they are!

Just AMAZING.

Nurse Tammy was taking care of Oakesie today and in her words, "He had a beautiful day!" I held him for a long time, we read books then he snoozed a bit, he got all new lines for his meds, clean sheets, and a little sponge bath from Momma. He also swung for a little over an hour, listened to a CD of Peter Pan, and finally we had a mini photo shoot. No complaints. In addition, we found out that there will not be a visit to the Cath lab this week, but tomorrow he will go to the OR with Dr. E for a little balloon dilation. Planning on an uneventful visit. The results came back from the biopsy, all negative, showing NO rejection. Still waiting for results from the stain that shows if Compliment is still around, but that doesn't seem likely. Oakes upper left tooth is in the house...I should say "in the mouth." My guess is the the right one breaks on through tomorrow. Yay for four teeth!! Also we have been given permission to take BACK to the garden at the end of the week for another photo session now that he is awake and smiling!

When I got to Oakes' room he was snoozing!

Then a happy boy when he woke up!

Snoozing again in the swing.

Could he look more comfortable?

Hugs from Tammy!

And here is Part 1 of the Halloween photo shoot:

Suggested by 7 year old, Harry Moriarty, "cause Oakes has some cool pirate scars!" Aaarrgg!

Oakes as a Fox cub. A sucky thumb Fox cub.

Oakes with his acorn hat on!

And last, Oakes as an Oak.

And here is Isla dressed up like a bouquet for flowers for her first Halloween. She was 6months old here. To see more of her Halloween pics, click here.

A very good week!

So, our Oakesie has had a great week.

To start, two weeks ago last Wednesday Oakes had gone to the OR for a bronch, biopsy and balloning on a new paralytic. When he came back they turned off his paralytic and we expected that he would wake up in about an hour, like he always has in the past. However this new paralytic has to be broken down by the kidneys and since his aren't working so great, it took 5 days for him to wake up. So this past Monday, I went into his room, like I always do, I dropped my bags in one of the chairs, walked to his bedside, kissed him on the forehead and by the time I stood up he had slowly started to open his little peepers. He looked groggy, and his eyes were uncoordinated, but I was so happy to see those eyes. He is still a little groggy, he is not 100% himself, but he is looking great! His left eye, as you will see, is still a little uncoordinated, a little lazy, but it seems to be improving daily, which is good news.

So this past Monday when I chatted with his nurse, I can't remember who it was, I told her I had big plans to hold him every day this past week. And in fact, Oakes and I have had a "week of love & snuggles." I have mentioned it here before, but it is great medicine for both of us!

On Wednesday Oakes had a bronch and biopsy. The procedure went well, his airways still look a little narrow but they didn't balloon them. Still debating about stents, no decisions have been made. More good news for the week, is that Oakes' numbers have been great. His heart rate has been the lowest that it has been in a long time, so are his CO levels. He is still getting lots of support from the vent, but that has been slowly weaned over the weekend and he seems to be handling that pretty well. We will be going to the Cath lab this week to measure pressures and see how his heart is doing after starting then giving him nearly a month on the thyroid medicine. Praying there is improvement in his heart function. This would be HUGE.

The other plans for the week are to get Oakes ready for Halloween. He has a handful of costumes, and I plan to dress him up and take pics all week long. Of course, I will post the parade of costumes as I document them!

The other news is that Oakes' 2 front upper teeth are in a race to see which one cam break through first. My guess is that it will be the left one. I had mentioned that one of his upper teeth had broken the skin after he was extubated and got his trach, but I was wrong. At the time there was some irritation to his upper gum from the breathing tube, but this time it is for real. And I am loving the normal baby milestones!!

That is the brief update for now. When I could have been blogging I was snapping pictures, I know you will enjoy! I have not felt this good in months. I am so happy and so relieved that we have had some quiet and boring days recently. Looking forward to another week of love and snuggles. (Oh, and now that Oakes is awake and smiling we are going to try to get back to the garden this week!!)

Love to all of Oakes' friends!

Isla, Oakes and the Rally squirrel!

We were all working hard to get a smile out of Oakes, but it was Isla that he got excited about!

Both of my kiddos together! The last time they laid side by side Oakes was 2 months old and he was at home! Oakes is now 7 1/2 months old!

Melt my heart!

Isla is going to be a "nice bat" for Halloween. Several weeks ago I made her costume, and a matching one for Oakesie. Before heading to the hospital she told me she wanted to bring her wings to show the nurses.





Oakes and I on Saturday. I had his back to my chest and we were reading books. All of the books that I have read to Isla when she was itty bitty. Oakes enjoyed it so much he dozed off...mission accomplished!
And when he woke up, he was in costume!

My other "nice bat"

Word spread that Oakes was in costume, and there must have been 6 nurses in his room, ooing and aahhhing at the cuteness. And then, Shelley got the smiles and giggles going. It made my day to see such big and happy smiles!

Just a few of Oakes' girlfriends!

Another snuggle session with Isla. Another nap as the result of story time!

Getting comfy!
While Oakes snoozed, Isla read quietly to herself.

Smiles today.
Finally, heading home. Isla with her Oakes Tshirt on, and pushing her shopping cart.

These are videos that I took today while I was there. Of course, Oakes smiled much more when the camera was off, but I got some of the cuteness on film....