August 3, 2005

They listed Charlie for transplant YESTERDAY and forgot to tell Linda until today! We’re glad that he is listed but someone should have told us. The transplant coordinator or somebody could have. Communication has broken down a couple / few times and it concerns us a little. The main thing is he is LISTED now – and because there are so few of Charlie’s size needing a transplant there – he is kinda at the top of the list. We like that too.

August 1, 2005

Linda and Charlie have adjusted to UCLA medical center. Charlie doesn’t get to walk much because he is hooked up to monitors that say how different parts of him are functioning – respiration, heart rate, oxygenation etc. He also has lines going into him so they can give him medicine and take blood for tests. Linda finds a chair or a cot to sleep in until after several days she can’t stand it anymore and then rents a near-by motel room to sleep in a real bed with a pillow. We gather the family about 9 p.m. and talk to Mom and Charlie on the phone. He especially likes the stories about the animals we have here in AZ. We made a video of the animals to take it to CA for him to watch. The doctors have been giving Charlie “plasmapheresis.” It filters the blood of antibodies etc. They told us if they liked the results they would finally list him. We thought they would list him on arrival. We didn’t like that surprise that he might not be listed for another week or two. Linda likes the improved color in Charlie’s skin and the way his belly isn’t so big. She says he may be healthier than he has been in a while.

July 22-23, 2005

Charlie went in for an EKG and ultrasound Dr. Jedeiken told us of Charlie’s fluids on the lungs, liver and kidneys and reminded us that when the heart goes so do all the major organs that aren’t getting the blood they need. He got the processes in motion to get Charlie to UCLA Medical Center – NOW! It’s a little disconcerting to get concerned looks and hugs from your cardiologist and crew. Linda hadn’t even unpacked from Wednesday. We almost brought all the bags back “just in case” but we didn’t have any idea it was that serious. Jerry retrieved the bags from home. The following morning, Linda and Charlie flew to UCLA Medical Center to start a new “chapter.”

July 15-20, 2005

Friday 7/15 We took Charlie for a scheduled heart catheterization. The procedure went OK and we found his diastolic pressure was high – meaning the “resting time” for the heart was too high. Coronary arteries looked as bad as ever. We were glad we didn’t follow Dr. Copeland’s advice of waiting for a year to do it. Charlie was listless, weak, and nauseous by Saturday and we had him in doctor’s offices and re-admitted to the hospital Monday. He may have reacted to the dye. He was given liquids, seemed recovered by Wednesday and sent home. Thursday was nice having Charlie home and active.

July 1, 2005

The transplant coordinator at UCLA called to say that she had presented Charlie’s case to the team and they were all in agreement to list him for transplant as soon as we can get the rest of the tests done and a phone interview with the social worker. Our cardiologist may try to persuade Dr. Copeland to go ahead and list Charlie, but we are not sure who we want to do the transplant anymore. It is also possible to list at more than one transplant center.

July 27-29, 2005

Our insurance company refused to allow us to take Charlie to Loma Linda. So, Charlie and Linda drove to UCLA for transplant evaluation there. They stayed in the Travelodge near the University and across the street from the Los Angeles LDS temple.

The next morning they went early to the clinic in one building, they talked with the coordinator and two cardiologists. After that, they had to cross the street, walk in one building, up the elevator, and out to another building to see the surgeon.

Dr. Plunkett, one of the transplant surgeons, recommended that we move forward in listing Charlie for transplant and have it done at UCLA. They will allow us to remain at home, possibly several months, until his name is high enough on the list, then they would have us move him there. If all goes well, he would only need to stay for a couple of months after the transplant, possibly a little shorter, since we have such excellent doctors in Phoenix that could take over his care. They took blood for a number of tests. They will check Charlie’s blood for antibodies and also check for reactions with the donor’s blood before doing the transplant. Because his blood-type is AB-, he can receive any type heart; it just has to match in size.

Linda and Charlie had a nice dinner on the Santa Monica pier, then headed for Lakewood to spend the night at Tommy Lyons’ house. Tommy was transplanted at Loma Linda the same day as Charlie-Nov. 20, 1995. Linda and Charlie had a nice visit with their family, looked at photos, and caught up on news about some of the other transplant kids. Tommy has had some respiratory problems, but is doing well, playing baseball and collecting lots of trophies.

May 31, 2005

We have had the same cardiologist for all of Charlie’s life who coordinates with Loma Linda surgeons that think Charlie has a serious condition. We have an Arizona surgeon in charge of a transplant program that thinks Charlie has 2 or 3 years and does not want to list him for transplant. We parents want them to get consensus and get going!

May 17, 2005

Linda talks to the insurance representative about going to Loma Linda. They don’t have a contract with them and may not pay for us to go there. The doctors office will have to look into it for us. There are other transplant centers on their list. Primary Children’s Hospital in Salt Lake would have been another of our choices and it isn’t on their list either. Children’s hospitals in Los Angeles and Denver are possibilities. The representative said that UMC only does about one pediatric heart transplant per year and they would prefer to send us to a hospital with a lot of pediatric experience. In 1995, after ten years, Charlie was the 196th infant transplanted at Loma Linda, not counting the hundreds of other pediatric heart transplants they had done, or even pediatric re-transplants.

May 13, 2005

The cardiologist is concerned and thinks we should go out to Loma Linda to see what the doctors there have to say. We schedule the MUGA scan to be done at Phoenix Children’s hospital on the 19th. The CT scan has to be done within a certain number of months of listing for transplant, so we’ll wait until someone is ready to list him.

May 11, 2005

Linda took Charlie to see Dr. Copeland in Phoenix. He said that he feels that Charlie has two or three years before he needs to be transplanted. His heart is functioning well. He won’t list him until he shows some sign of heart disease. He was going to have him get another heart cath. in a year, but Linda pointed out that he had a bad history of rejection. Dr. Copeland asked what his heart caths had looked like in the past. She told him that they hadn’t looked good for the past two years. The small coronary arteries were tiny and few. He decided to bump up the heart cath. to six months instead. He didn’t want to bother with the MUGA scan and CT scan if Charlie had to have anesthesia for them. We are very concerned that if we wait until Charlie is sick to list him, he could end up spending months in the hospital on monitors and medication and may not survive the wait for a donor heart. He told Linda that Loma Linda was run by a group of cardiologists. His program is run by surgeons, with 23 years of experience.