All 3 Surgeries Were Complete Successes

Friday’s surgery with 3 of the top surgeons in the US was a complete success!

Lucas became the 1st patient at Boston Children’s Hospital to receive a Fecal Microbiota Transplant (FMT) from Dr. Russell. Once again, making history baby!!! Basically, all but a handful of childrens hospitals only perform a FMT on a child that is 5 years or older. In fact, Phoenix Children’s Hospital does not even perform FMTs on children of any age. Lucas is only 14 months old. So, he is one of, if not the youngest, child to receive an FMT. The FMT has a 90% chance of eliminating the C. Diff infection which has plagued Lucas since January. Plus, the C. Diff may be causing the rickets issue since he has nutritional rickets. So, we may have fixed both the C. Diff & rickets issue with the FMT.

BTW – Lucas has a higher chance than other children to once again be infected by C. Diff since his body is not strong enough to fight off the icky infection. The best way to get a C. Diff infection is to be on high doses of antibiotics for any period of time. So we are avoiding antibiotics like the plague. Praying we never have to fight C. Diff again.

Dr. Manfredi performed some cutting on the top esophageal area and a  balloon dilation on the lower congenital stricture to get it all the way to 12 mm. We’re so pleased! The lower section had slightly shrunk back down in size over the last week. So Dr. Manfredi foresees needing to dilate the area again on next Thursday/ Friday. We are unsure how many more dilations are needed before we can return home to AZ. I predict we get to go home in the next 2 weeks. But we may need to return for a quick 4 day trip back to Boston in 4-6 weeks for another dilation. Then, we may not need to return until May.

The bronchoscopy results were a bit surprising to me. It confirmed Lucas has “severe” tracheomalacia. In time, it will become obvious if Lucas will grow out of it or need a surgery to correct the issue. Normally by 5 years old, you’ll figure out if surgery is or is not needed. When Lucas’ trachea is the most open, then the weak area has only 40% of his trachea to breath through. At times, the  tracheomalacia area is even completely flat & only a straw’s worth of air can fit through. Poor baby boy! On the bright, side he’s lived this way for 14 months. So the doctor hopes he will continue to avoid respiratory infections and the area will naturally get stronger as he grows.

Lastly, this morning Lucas was released from the hospital. Now we are relaxing & ready to have some fun out of the hospital!

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