Tomorrow, Lucas will have his 4th surgery @ 1pm EDT. Dr. Manfredi will view the 2 issue sections of the esophagus. Then, he will decide to dilate the areas with a balloon if they show some shrinkage. Most importantly, we will get a better idea as to when we can go home. Maybe in the next 2 weeks. Super excited!
Monthly Archives: August 2014
Milk Allergy Test
After almost 14 months on the absolutely terrible tasting Neocate formula, we received an approval from Dr. Manfredi & nutrition to test Lucas’ gut with a milk based formula. Yippee! Over the last 2 days, we gave Lucas some Gerber Blueberry Yogurt with no negative reactions. In fact, he loved the yogurt! So this morning, we switched to PediaSure formula. After 5 days of no issues (on Sunday), we can assume Lucas does not have a milk allergy which would be amazing!!!
Neocate is the most broken down formula you can buy with no dairy or soy of any kind. The formula is not covered by insurance. So we pay $800 a month out of our own pocket to feed Lucas the Neocate formula that literally tastes like rotten fish! Normally Neocate is used for babies that are feed via a feeding tube or button. This makes it even more amazing that Lucas has been drinking the terrible tasting Neocate via a bottle 8 times a day. Lucas is such a good boy.
Lucas appears to enjoy the taste of PediaSure. He does seem to have a bit more coughing after drinking a bottle of PediaSure. In time, we foresee the coughing will go away once he becomes accustomed to the thicker texture. PediaSure has 30 calories per ounce vs Neocate at 24 calories per ounce. So, Lucas needs to drink less formula a day to get the same amount of calories. The goal is to drastically reduce the number of bottle feeds per day and increase the number of solid feeds over the next couple of weeks/months. So happy! Praying Lucas does not have a negative reaction which would mean he has a milk allergy. No whammies!
Quick Two Day Trip to See Family
After being released from the hospital on Saturday morning, we made an impromptu decision to rent a car and drive 3 hours to see our relatives in Clifton Park, NY. Lucas loved spending time with his Aunt Carol, Aunt Vivien, Uncle Gary, Jody, Frank, Mark, Annette, Kelly, Phil, Chad, Nikki, & Hunter! As an added bonus, Papa & Nani were still in Clifton Park on vacation. We had many fun and memorable moments. Plus, tasty homemade food! Now, we are driving back to Boston to make our 4pm doctor appointment with a Chief Endocrinologist at Boston Children’s Hospital.
This morning, Lucas got to eat pancakes with butter and syrup for the very 1st time! He loved the taste!!! Now that Lucas’ esophagus is larger, we can start feeding him very small and soft pieces of food from our plates. Such a wonderful moment to see…Jody – Thanks for making the pancakes!
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!
3rd Surgery at BCH
At 7:30am, Lucas will be under anesthesia for a 3rd planned surgery at Boston Children’s Hospital. There will be 3 surgeons who will perform a dilation, bronchoscopy, & FMT (stool transplant to eliminate the C. Diff infection). So much is being completed which is making me a bit nervous. Praying for a smooth surgery with no breathing issues.