Since our last blog we have had a lot of things change in the positive direction as we wait for Alessandro’s heart transplant.
In the month of September Alessandro got switched out from the Central Mag machine to the Berlin Heart which was on 9/10/25. The switch is made for a more efficient, reliable, and sustainable while we wait for the donor heart. The possibility of having blood clots are higher with the Central Mag machine which could potentially lead to strokes and take him off the transplant list.
Alessandro has been doing great with the Berlin Heart. Even thought we are living at the hospital, he has still been able to have Physical Therapy and Occupational Therapy help meet milestone goals of a “typical/normal” child. He is able to sit up seated unassisted and has been standing on his own feet assisted.
By 9/17/25 the chyle chest tube was taken out after it was first discovered on 6/16/25. At first we were optimistic that the fluid was completely gone but it has over 45 days since any of those conversations have been talked about.
Alessandro got moved from the CVICU side to the monitored hospital side next door. Here it is a more comfortable setting and the care is less urgent and more relaxed. Angie got to decorate Alessandro’s room for Halloween and we got introduced to the program called “Little wishes”.
Alessandro’s biggest challenge, besides the adjustment to his Berlin heart and medication has been keeping food down. He had a Nasal tube placed since we got back to UCLA. That tube was giving him formula and medication around the clock, but it would irritate his throat and cause him to throw up multiple times a day.
In the middle of October they took the tube out to give him a bit of a break. Now heading into November the tube hasn’t gone back in but the team is still considering placing one back to help optimize his condition for post transplant
We celebrate Halloween here and it was great having that feeling of normalcy for a bit. Alessandro and Adrian had gotten their costume from Little Wishes. They were both turtles inspired from the Disney Pixar movie Finding Nemo. Angie was dressed as Dory and our Aunt Irma was Peach the Star fish.