We are so proud of Frankie and his progress on his home ventilator. He really cruised ramping up to 24 hours a day on the home vent once he was in a stable place and ready to tolerate adjusting to a different vent that he has to do a little more work himself on to trigger breaths than the hospital vent.
I love that he’s on the home vent all the time now because it’s much easier to get him in and out of his crib at the hospital independently. He’s been mostly on less than 1 liter, generally at 3/4 or 1/2 liter which is so great — basically room air. He’s had a wonderful month and is so smiley, happy, and full of joy. His happiness is contagious and his spirit is so strong. You can see the beautiful light in his eyes as he giggles behind his trach. I’m so, so proud of our boy.
We are still determining the plan forward for Frankie. Originally, we planned to get him onto the home vent and we’d be ready to pack our bags and head home. But we’re revisiting trying to feed him again. We are expecting to ramp up a feeding trial in the next couple of weeks. Please pray that Frankie tolerates his enteral feeds. The last two times we tried feeds were very scary and we almost lost him during those periods. His surgeon says his reconnection surgery is pointless if we aren’t totally sure that the piece of bowel that goes out to his jejunostomy will absorb food. Over the coming weeks as we do this feeding trial, we also have to decide if we want to proceed with surgery (if he tolerates the feeding and proves that piece of bowel works) this Summer or if we should go home for a while and be readmitted for surgery next year. This mama’s heart is breaking over this decision. Please pray for clarity.
We are working on getting the house ready for Frankie’s homecoming. We got his bed a few weeks ago and we’re starting to transform the dining room into Frankie’s bedroom (or mini hospital?). The basement is almost finished now. We’re starting paint next week. This will become a second family room and Henry’s play area. We’re working on getting nursing set up for Frankie. We should have nursing at least 12 hours daily at home for him. I’ve heard about a lot of challenges with home nursing, so please pray the nursing company assigns us excellent nurses experienced with trach/vent kids like Frankie and they will be a great fit.
In the meantime, we’re continuing to follow Henry’s hemihyperplasia. We were referred to Shriner’s hospital where we’ll do some new x-rays and see if their team has any new ideas or suggestions to manage the overgrowth and help Henry compensate in his crawling and as he begins to walk. He’s working on pulling himself up on things and enjoys standing with support.
Thank you for your continued support and love.
Amanda
