Good evening, dear friends and family. As always we hope you are all happy and healthy! If you don’t read anything here, please read the last four or five paragraphs, as that is where we will most need your help!
It is hard to believe, but it’s been 17 days since our last update email. In that email, we had passed along that Oakes had just received three stents in his pulmonary veins with the hope being that those stents would provide some stability from the pulmonary stenosis that had been wreaking havoc with Oakes’ veins.
Well, we are happy to pass along that the last two weeks have really been the happiest days of Oakes’ four plus months on earth. It is clear that, at least for the time being, the stents are, in fact, doing their job and letting the oxygenated blood flow more freely back into his heart. Remember, this pulmonary stenosis is a progressive disease so we know it will narrow his veins somewhere at some point in time, we’re just not sure if that’ll be this week or in six weeks or when. The stents are simply to buy us more time in our wait for a good set of lungs. But at least they are working for now, so we have to focus on these good times.
The last couple weeks, Oakes has been full of smiles and stretches and faces for all of his visitors. He was moved from the CICU down to the recovery unit about ten days ago. Different from the CICU, the recovery unit typically has two patients per room. Oakes literally had five roommates in his first six days there!
This may surprise some of you, but Oakes actually came home yesterday. There were whispers about this a couple weeks ago, but we had been down that road before only to have a hiccup or two cause the plans to change. This time, though, he actually came home!! Of course, he came home with all kinds of souvenirs again – the oxygen machine, the cannula feeding him oxygen, the NG tube which we feed him through every three hours, his Broviac catheter line which we feed his heart medicine, milrinone, through on a continuous feed and then we also have a fancy pump that regulates the rate at which we feed him through his feeding tube. He will have a nurse visit him four times a week, a speech pathologist visit once a week to help him learn how to eat by mouth again and a physical therapist visit once a week to help him try to physically catch up to his peers a little bit. As happy as we are that he is home, you can imagine this is just a different type of stress than the hospital. It’s truly nice not to have to visit the hospital every day and Isla could not be happier that “Oakesie” is home! Right when he got home, she asked “Oakesie? Stay?” It just made us cry..…because of the cuteness of the question as well as the reality of the answer.
So we are just hanging out waiting for a good ol’ set of lungs. During Oakes’ first night, last night, he was working a little harder than normal to breathe. We’re not sure what it is, but we’re keeping an eye on him. We are very sensitive to the “pulling” or “retraction” around his ribs which would be a clear indicator that he is working too hard to breathe. He is tugging slightly now, but we’re holding out hope that this goes away soon, otherwise we’ll probably have to head back to the hospital at some point. If the stenosis returns before we get lungs, we’d either have another cath procedure to open up the lungs (possibly including more stents) or we’d move to the artificial lung machine I talked about in my last email.
I mentioned in previous emails about fundraising so I wanted to touch on that quickly. Ever since Oakes was diagnosed with his congenital heart defect while he was in utero back in October, Becky and I have been asking ourselves “Why? …..Why us? …..Why Oakes?” I mean, this was not in any of our plans and it has turned our lives upside down. In the last three to four weeks, we believe we have started to understand, at least in small part, maybe “why” this has happened to us. In talking with the fundraising coordinator at St. Louis Children’s Hospital, she advised us to work with one of three national organizations which assist families in similar positions in fundraising. The more we looked into these organizations, the more it dawned on us that we should start our own foundation. We would have more control over where and why the funds were directed and this would create a lasting legacy for Oakes that, hopefully, will be here helping other families dealing with congenital heart defects long after Oakes has left us, whenever that may be. The fundraising coordinator told us that most of the families she works with are in the position of absolutely having to raise money during the time of hospitalization and post-transplant. Not all of these families are as fortunate as ours – having a tremendous network of family and friends with the means to help, having amazing health insurance coverage and having one of the best Children’s hospitals right down the road.
So we have decided to found The Mighty Oakes Heart Foundation, a non-profit organization dedicated to providing financial support to families coping with the traumatic reality of congenital heart defects, the most common birth defect in the United States. In an effort to help improve the treatment of congenital heart defects, the foundation will also endeavor to identify leading research and development grant recipients. We are SO EXCITED about this foundation and really want to make it a success….but obviously we’ll need a lot of help along the way.
We are in the midst of putting together a Board of Directors, a website, a logo, a filing for our non-profit status and a huge fundraising event to be held here in St. Louis in November. Ellen Moriarty, our dear friend, is spearheading the efforts around the November event. There will be much, much more detail in the coming days and weeks but in the meantime, please SAVE THE DATE – NOVEMBER 11TH & 12TH.
All of you are asked to contribute to charities throughout the year – ones close to your families or other friends, ones that let you play golf on a work day J, ones that help with some current tragedy and many others. This just happens to be one that is close to our family and close to our heart and, obviously, Oakes’ heart. And we think we can help a lot of families, families that we have gotten to know well.
Oakes lost one of his new friends from the CICU last week. Ronan, the little boy who was the first baby to be put on the artificial lung machine, took a turn for the worse one night last week and passed away. It was crushing news to hear because him and his family had been such a fixture on the floor and Becky had befriended Ronan’s mom….and then one morning we came in and his room was empty and everyone was gone. Ronan’s family had a baby girl a couple years ago with a rare disease that there was no cure for and she passed away as an infant. They were told if they had another baby the odds were something like one and 10,000 that the baby would have the same disease…..then Ronan was born, with the same disease. Fortunately, this time around, the artificial lung machine was available to buy Ronan some time while they tried to “fix” him. Ronan’s family had spent the previous few months staying at the Ronald McDonald House here in St. Louis because they lived in northern Michigan. This would be the exact type of family we’d love to be able to help. Not that things would have necessarily turned out different, but helping make their lives easier while dealing with such an emotionally-draining and physically-exhausting (not to mention expensive) time in their lives.
That’s all we have tonight although I did attach a classic picture from last Friday of my gorgeous family. This is my phone screen saver; love it! I’m sure Beck will be posting additional pictures on the blog soon as well. Enjoy, keep the prayers and thoughts coming and we’ll be in touch soon!
Love you all,
Greg, Becky, Isla P. and Mighty Oakes
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