Prayers Answered Again

It’s hard to describe the emotions when you have a day like today. If I think at all about how things went, tears quickly fill up my eyes. Tears of joy.

Lucas was a little trooper yesterday not being able to eat the entire day. We gave him Senna Syrup twice to produce bowel movements and an enema in the evening. We didn’t get to bed until after 1 am, and then we had to wake at 4 am for another enema and our eventual arrival at the hospital by 5:30 am. For what its worth, waking up at 4 am to give an enema to a 16 month old will not make my “Best Ways to Start the Day” list any time soon.

The rest of the day, however, could not have gone any better. As Jill mentioned in a previous post, there were really three procedures today:

  1. An esophageal dilation
  2. A colonoscopy
  3. Lucas’ second Fecal Microbiota Transplant

Dr. Manfredi was “really pleased” with how Lucas’ esophagus looked. The top stricture, at the anastomosis site, is still wide open and looking great. He didn’t do any work at that site today. The bottom congenital stricture is also healing up really nicely after the extensive work done last week. The even better news was that Dr. Manfredi was able to pass a 12 mm  balloon back-and-forth through the stricture without resistance. This was awesome news. It is exactly where we want his lower esophagus to be. He also cleared us to eat food again, which we are sure Lucas will be very excited about. The only thing Dr. Manfredi did at the lower site today was inject some steroids to promote healing – no dilatation. He will look at the congenital stricture again in a week or two to see how it continues to heal. My impression from Dr. Manfredi was that it looks so great, that if we can get this to heal well now, that we will be able to go a long time before our next dilation.

The biggest news of the day, however, was the colonoscopy results. Both Dr. Russell and Dr. Manfredi said that Lucas’ colon looked great. They were also able to drive up into the ileum, the final part of the small intestine, and that also looked great. They did take biopsies, but visually, there was no sign of Crohn’s Disease. This awesome news was so shocking to me, that it almost seems unreal to type. Lucas’ symptoms matched Crohn’s so well, but God has a different plan and keeps teaching us to expect miracles from the power of your prayers.

Lucas’ also had his second Fecal Microbiota Transplant (FMT) today. You may recall that a few months ago, Lucas became the first child at Boston Children’s Hospital, and one of (if not the) youngest children to ever have an FMT. Unfortunately, and despite the incredibly high success rates for FMTs, it did not succeed. Today, we did a few things differently. The biggest change was that today we used stool from the “poop bank” provided by OpenBiome. Dr. Russell’s early Crohn’s research suggests that using stool from an unrelated donor might actually yield better results. For that reason, and a few other reasons, we made the difficult decision to go with the bank this time. Like any donor product, such as blood, it is not without risk, but we felt the benefits outweighed those risks. Also, since this FMT was administered via colonoscopy instead of NJ-tube, we gave Lucas some Imodium AD and had him lie in a head down position for a while in an attempt to keep as much of the transplant intact for as long as possible.

Our mega-prayer now is that this second FMT will be completely successful, clear Lucas once-and-for-all of C. Diff, and that with C. Diff gone Lucas will make quick big strides against our two biggest remaining hurdles: rickets and immune deficiency. Yes, it’s possible. God still makes miracles happen every day.

With God, all things are possible.  -Matthew 19:26

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