For everyone new to our story, hello, we’re the Katz family, and we have some beautiful kids! Our youngest has trisomy 21, and with that comes many complications. Our Tommy was born with a congenital heart defect and has been monitored from around an 18-week small growing fetus until August 28, when we got the call. It’s time for y'all to come in to meet the surgical team, please be here Monday. We start our 2-hour trip to Jacksonville! We meet our surgical team; they are so wonderful, they answered every question we had, we truly were blessed with a wonderful team! They tell us to come back September 5th, it’s pre-op, time for all the things—EKG, echocardiogram, x-rays, and lots of blood work. They schedule his surgery for Sept. 8. We knew we would stay through the weekend, leaving our 2 older boys with their grandma until we come back after surgery. Our weekend was cut short when they asked for us to come back and be admitted 1 day early for more blood tests, to double-triple check he wasn’t having liver problems. All is clear and surgery goes smoothly… poor Tommy had a rough go, he twisted and turned, barrel-rolled, threw up all day (poor baby, you know it was hurting his chest) and just was so, so mad. After 2 days of sleeping 10-15 minutes at a time, they gave him some meds so he could sleep. Poor Tommy finally got rest. 3 days later, they send us home with a sack full of meds, so many sternal precautions, and phone numbers just in case. Tommy has been a beast, even so much so, he popped 2 of his sternal wires—his surgeons are impressed with his strength, us parents are petrified. This whole journey, my husband has been by my side, helping the entire way. Driving us to and from Jacksonville, navigating the city, and being the rock of our family. But his time with us is over and he needs to return to work. I’m asking for some help with back bills, and if there’s enough left over, some time home for my husband so he can help me with Tommy. It sure is a lot of work, carrying him properly, keeping him from all the things like crawling, falling on his arms, lifting his arms above his head, holding his chest while he coughs. We aren’t out of the woods yet and have a long road to recovery ahead of us. Anything helps. Thank you.
Update: Thomas echocardiogram was looking good! He still has slight enlargement of the right side of the heart, and his patches are healing nicely. His incision on the outside looks beautiful- his sternum…. Popped 2 out of 3 wires, so a little extra precautions so he doesn’t split his sternum open.. thank you again for everyone who has shared, donated, & prayed for our family. Please continue to share! We have a long road ahead of us.