What do ya know, the boy is looking good!

Ashton decided to start running a fever on the way to the hospital, so when they saw this, they decided not to sedate him for an echo. We asked if we could just have them do the echo without sedation and they agreed to give it a go. I don’t know why they always want to sedate him. Don’t they realize that he is way more interested in what is on TV than what they are doing with that slimy thingy on his chest? I wouldn’t be surprised if they could do surgery on Ashton if they had the TV on, especially if Cars was playing. Lol.

His cardiologist says that the blood flow through the pulmonary artery is almost nonexistent, but the flow through the Glenn looks really good. He doesn’t have any leakage in his valves and overall they are really happy with how he is doing. He stressed that they don’t want to do surgery on Ashton at this time because he is way too young. At minimum, they want him to be 2 years old, but it sounds like they would like to wait as long as possible.

We got some clarification on how to adjust the O2 flow and where we need to keep his sats. We have been told that we should use the oxygen continually, for various reasons that would be lengthy to try to explain. But then we were told to keep his sats within certain parameters. Then there are those times when his sats are higher than they tell us they want them to be, but he is on room air so what do we do, put a pillow over his face until he needs oxygen? We were told during this visit that if he is within the parameters they have given him, then he doesn’t have to be on oxygen but that we should put him on at night while he is sleeping. It is so confusing sometimes and it is hard to know what the significance is to some of the direction we receive. So, we do the best we can figure to do and then try to find some time to treat Ashton like a regular little boy who loves to run and play. We do our best to give him the care he needs, but I would hate to have something happen and have him go out of this world without having some fun. Sometimes I think that the food for the soul can heal some of the needs of the body. Hopefully he won’t get sick quite as much as he did last winter season. He is up to date on his shots now and he has received the flu shot this year and his cardiologist told us that if they give us a hard time with the Synagis shot for RSV to let him know and he will help us with encouraging the insurance company to pay. They have paid the last 2 years, but it is not something they really like. The first year the shots were about $1,200 per shot and he had them 1 time a month for 5 months. Last year, they were $3,200 per shot. It is based on his weight, so I can’t imagine what it will be this year. We are lucky that our primary insurance pays for this shot 100%. We just have to impress upon them the importance of him having the shot and that seems to always be a fight.

We are glad to have some positive news! We have our next appointment in March, so hopefully it will be uneventful between now and then.

One thing that is discouraging is that we wanted to go see Shanna’s grandma (who has been in a care center now for several months due to having a stroke) in SLC. Ashton had a fever so we thought we shouldn’t take him in there and take the chance of him getting some of the elderly people sick. That was Friday that we came home. Today (Saturday) we got a call telling us that she passed away today. It sounds like she was struggling and may not have been up to a visit anyway, but it would have been nice to see her. She was in her 80’s and has lived a good long life. She has been on 3 missions; I think it was, but maybe 4, for the LDS church. She has done more genealogy than anyone I know and she has always treated us with love and kindness. We will miss her but are glad that she is able to be with her husband again after being separated for so many years.

For those heart families who check on us, we hope you have a healthy winter and can enjoy the holiday season AT HOME! We check on those of you in Intermountain Healing Hearts, but it is amazing how fast the group has grown, it is hard to find time to keep up with everyone, but we want you to know that we keep you in our thoughts and prayers.

Nathan & Shanna Hardman