Good evening, everyone. Hopefully you are all staying cool and enjoying your weekend with family and friends. We are at about 11:00 ONL time or 11 hours into “Oakes New Lung” time. So far, things are going pretty well. If you’d like a play-by-play of the action last night and throughout this morning, you can check out Beck’s blog at www.babyortyl.blogspot.com. The abridged version of that is that the transplant was postponed from 10:30pm until 2:45am. Apparently, the donor’s hospital typically has multiple offers out to multiple other hospitals throughout the country and they need to coordinate the harvesting of all of the organs at the same time, which is really amazing….that was the cause of the delay. They kept telling us that there was a possibility things could be cancelled if the lungs, at any time, didn’t look darn near perfect. Anyway, we waited in the same-day surgery waiting room and we were, not surprisingly, the only ones waiting until about 5:30am when the staff came in and then other families started to trickle in for surgeries during the day Friday. We got updates every 60-90 minutes and then we received visits, in order, from Dr. Lee, Oakes’ cardiologist, Dr. Eghtesady, one of Oakes’ cardiothoracic surgeons and finally Dr. Huddleston, Oakes’ main cardiothoracic surgeon. All of them said the surgery went well. The worst thing they could say was there was some hypertension in the veins, but not totally unexpected. For the first few days, anyone entering his room, including nurses and family, has to wear a gown, a mask and gloves as he is super susceptible to germs (of course, he will always be more susceptible to disease and germs than his peers). Anyway, I’ve attached a picture of the Mighty man to this email. This picture was taken about two hours post-surgery. At some point, we’ll have to name all of the lines, tubes and caths in this picture…but not tonight.
So ultimately, Oakes is resting comfortably, heavily sedated and paralyzed this evening and his numbers are all, at this point, very good. They have actually been aggressively weaning him off of his oxygen already. So much so that they have been surprised at how much they’ve been able to wean him. But we are not even remotely close to out of the woods.
The biggest issue with any organ transplant is the risk of the patient’s body rejecting that organ. In Oakes’ case, that risk is significantly higher. Because Oakes has already had a significant amount of “foreign” blood pumped into his body from his two previous open heart surgeries and because he’s had cadaver tissue implanted in his body for his heart and arterial repairs, his antibody levels are very high. Set that aside for a moment. There was a very small chance that they type of donor lung tissue would be the type that Oakes’ antibodies would not aggressively attack, however that test, which was run at the beginning of the transplant, showed that Oakes’ antibodies would indeed attack the donor tissue. This was no surprise, but because of how high his naturally-produced antibody levels were going into the transplant and because of the fact that we knew he’d produce antibodies to attack this new lung tissue, they have to take aggressive steps to reduce his antibody levels. First, he required a plasma exchange procedure during the transplant. This involved, essentially, removing his blood from his body and stripping away about 90% of the existing antibodies. Second, he requires plasmapheresis once a day, beginning tomorrow, for five days. Plasmapheresis involves, again, removing the blood from his body through two venous lines, and having a huge machine remove the antibodies again. Each time this procedure is done, it effectively removes 80%-90% of existing antibodies, which hopefully is a much less number due to the plasma exchange already completed early this morning.
So here we have a four month old baby, having already had two open heart surgeries, with a lung transplant needing plasmapheresis. It is a mix that St. Louis Children’s Hospital, which has done more pediatric lung transplants than any hospital in the world, has never seen before. They have done plasmapheresis on heart transplant babies this young before and the data tells them that at some point during Year One post-transplant, the patient’s body will reject the organ. But if the patient can somehow rally past this rejection, their odds of survival are the same as any other transplant patient. Of course, that is with a heart transplant, no one really knows about what the stats say about plasmapheresis on a baby as small as Oakes who has had a lung transplant. Unchartered waters, as usual, for Mighty Oakes.
The first plasmapheresis is tomorrow morning, so we are trying to catch up on our sleep after being up for about 38 hours straight as of right now. If you read some of my posts on the blog, you can sense some sleep deprivation; I barely remember typing that stuff.
If you read one of my previous emails (can’t recall which one), I mentioned that one of Oakes’ friends, Ronan, had passed away last week. It was so shocking and crushing to hear, especially with everything that the Bush family went through with him and his younger sister who was already in heaven by the time Ronan was born. Anyway, I have read this five times now and it is such an emotional reading for me and Becky – Oakes was named in his buddy Ronan’s obituary:
On that note, I’m hitting the hay. We love you all so much and we’d be remiss if we did not mention how incredibly grateful and blessed we are that there was another family out there who allowed their baby to donate their organs, which has, in return benefited Oakes (and it sounds like several others as well). Organ donorship is the reason Oakes is still alive today and what an amazing gift to be able to give.
We will keep you posted on Oakes in the coming days, but as always, please check in on the blog to get more updates and pictures. Details on The Mighty Oakes Heart Foundation event on November 11th & 12th will also be coming soon!
Greg, Becky, Isla P & Mighty Oakes