August 10-14, 2005

Jerry took Wed-Fri off from work to drive the van to CA-420 miles in 7 hours. He left the van with Linda so she could be mobile. (our home teacher from church donated frequent flyer miles so Jerry could fly home.) Jerry got to meet doctors and nurses and get acquainted with the facilities.

Charlie is in a long, rectangular room with about 8 beds with his head at the window side and feet toward the walkway. There are monitors at the head of each bed. Charlie had IV medications and monitors attached that measure body functions like heart rate, respiration, etc. One medicine, milrinone, helps his heart to function more effectively. The need for it puts him high on the transplant list – but tethers him to the IV, machines, monitors bed and room. He likely won’t enjoy fresh air, sunshine, or walks down the hospital halls until after transplant and recovery.

We got an opening at the Ronald McDonald House so Jerry’s 1st night wasn’t spent on a hospital cot like Linda has used. $10 per night but 12 miles and 35-45 minutes away depending on traffic. We met Nicole Draper from AZ who has baby twins waiting for heart transplants.

Charlie has to listen to a room full of children-patients agitated and crying sometimes. He did not adjust quickly to that. Crying children agitated him- and his vital signs and his sleep. After 2 or 3 weeks he has gotten where he can tune a lot of that out.

Charlie got a chest tube inserted- and later a second tube to drain fluid from his chest cavity. The tubes work well but they hurt for several days after being inserted. Jerry was amazed that Charlie has spent 3 weeks sitting on that bed- resting, watching videos and TV, reading, WAITING. He is our brave, patient boy!

Charlie wasn’t eating much and they were concerned, but he saw Jerry eating chips and salsa – and he wanted some too! It was chunky “medium” salsa that was hot enough to make him request more water to drink. It was cute watching the doctors and nurses on the phone calling others to say -”the Fox kid is eating” We bring in other foods for Charlie to eat that the hospital doesn’t serve – then we eat the hospital food that Charlie refuses to eat. We have met a few church members out here. We haven’t gotten out much, except walks around the neighborhood and UCLA campus, but hope to meet more transplant parents and others.