I received a call tonight from one of the two fetal/newborn cardiac surgeons at Boston Harvard Children's hospital this evening. It was the most informative conversation I have had yet on what is going on with Bryce, what possible treatment options are, and what his chances are. It was on the one hand a very sober and even difficult conversation, but the very fact that this man called me on his commute home seemed to eclipse the emotion of fear with one of hope. It would take to long and bore many to tears to list out everything we discussed, but I did want to convey our plea for your prayer as we face some very difficult choices right before us. The difficulty of those possibilities was clear as I relayed things to Nicole and she melted into tears. This is a rather long list of explicit requests, but it is pretty complete as well. Your love and your prayers have upheld us. We feel that many of you, our friends and our faith family have a real important part in the lives of our boys, and in our family. Our children have seen some very good things on account of some very good and giving people. We remain so grateful for the people in our lives, but most importantly, for a loving God who we can know and trust very personally.
1) He made it clear that a Chattanooga delivery was simply not an option if we had any hope of saving Bryce, but even our Chattanooga care takers would admit that I believe, at least Dr. Scott said he had been trying to prepare us for that over the past month or so.
2) The birth is likely to take place in Boston or Cincinnati and we will have to make that decision this coming week.
3) While we would prefer Cincinnati because of its familiarity and proximity, we will simply chose the center with the greatest history in dealing with this very rare and difficult sort of situation. Boston has been a pioneer with moderate to severe Epstein's Anomaly cases and he even conceded that though they had the longest track record in handling these rare cases, they had only cemented a treatment plan over the past two years. On the one hand it complicates things that we have TTTS twins, twins in general, but on the other he said it may play in our favor because he said twins are more durable early on than singletons. They tend to be tougher he said also suggesting that 32 weeks a good gestation for a twin but a very risky delivery date for a singleton.
4) We will have a consult with Dr. Lim who performed the laser surgery in Cincinnati Monday evening after our Fetal Echo and full growth exam. This conversation should be instrumental in helping us choose what to do. However, the Boston team is going to review the Echo on Tuesday and consult with us that evening. So we should hammer out a plan of attack by the week's end.
5) We will have to be where we will delivery in 2-2.5 weeks so we do not have much time.
6) Bryce will have to stay there most likely for 2-4 months. One of us will have to be there in town at all times so this will be a very difficult period for our family and I will simply have to travel back and forth for work though Nicole should be allowed some trips home as well.
7) Dr. Rathod at Harvard said they would do everything possible to save Bryce if we choose Boston, regardless of how severely sick his heart may be, but that the outlook for him was not superb. Meaning, based upon what we believe we know now, stats are not as favorable as the stats for surviving TTTS were with Laser. He said if they determine that his Epstein's is severe, he would have only a 10-20% chance of survival but he believes it is a moderately severe case which does improve odds and outlook.
8) We are going to try to have Nicole's airway inspected while we are in Cincinnati and we pray that the stenosis has not closed too much.
9) I have entirely forgotten till just now that we also face a surgery in Cincinnati post delivery on Nicole's trachea to permanently fix the closure issue by removing the affected portion of her airway and pulling the remainder together.
10) We have had major construction at our home and this will have to proceed while we are away and I will have to make many final decisions in regards to elements of construction before we have to leave.
11) I will have to figure out a routine so that I can focus and work (on business) while I am away and stay in contact with our team here as we rush into pool season (the worst time for me to leave).
12) It will be very difficult for us emotionally to be apart from our support system and family, especially our children so much. It will also be difficult for our kids. But they are strong, great kids that have all committed themselves to doing what we must as a team to save our boys. They already love their two new brothers very much.
However, at this point we have NO certainty of what really lay ahead and what our treatment plan will be. We have options, even probabilities, but no certainty. We are committed to doing whatever is most likely to render a positive outcome, even if our chances turn slim, Dr. Rathod (if they take our care) said they would do all that could be done to the very end. But I remain optimistic that this remarkable, strong, durable, beautiful son of ours is going to make it. I just believe it.
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