Monday, November 29, 2010

Monday, November 29, 2010

Heard from dr Rahimi. He upped Greyson's meds again and said he is still going to discuss possibly doing one of the procedures we talked about. He also said the meds won't necessarily increase his saturation levels but will help prevent him from having a cyanotic episode (turning blue). Dr holly did say she thought he was more cyanotic today than he was a few weeks ago. We go see dr holly again on Thursday so we will see what goes on then. In the mean time we need to keep an eye out and making sure he doesn't get more blue. I have noticed that his lips don't regain their color like they used to and his hands and feet are cold a lot more often.

Here is a site I found that explains a lot about double outlet eight ventricle. It shows the shunt they are considering doing and discusses the Glenn and fontan surgeries. Remember his great vessels are switched and his valves are attached through the VSD.

Double Outlet Right Ventricle

Wednesday, November 24, 2010

Balancing act...

I heard from dr Rahimi. He spoke to dr J and we are going to increase Greyson's Meds to .6 cc three times a day and go see dr holly Monday and get another saturation level. Fingers crossed that helps and he will be able to hold out until his Glenn at 3 months. So we will know more on Monday.

Tuesday, November 23, 2010

It's Greyson's world we just live in it...

Ok heard from dr Rahimi. We are upping Greyson's medicine but they are talking about doing a shunt which is open surgery but might be able to be done from the side or a cath balloon to open the PA. He said the cath would allow some time until his Glenn surgery in january. I am guessing we are looking at something in the next two weeks but dr Rahimi will talk to dr J (who did the cath balloon before) and dr Fiore (cardiothoracic surgeon) and get back with me tomorrow. I dont know why I would be surprised by anything when it comes to Greyson. He makes his own plans. I'm still hoping to not be in the hospital over Christmas again this year but that might not happen.

Thursday, November 18, 2010

November cardiology appointment

Greyson went to the cardiologist today, dr. Rahimi. We got there at 10:45 and didn't get out until after 3 pm. It was a very long day. We did two echo's bc he was upset and crying for the first one and they didn't get very good pictures. He was put on propranolol .25 cc three times a day. The muscle blockage under his PA is getting a little bigger and his oxygen saturation was 74 it was in the mid to upper 80's when we left the hospital. I was not real happy about that number but if the medicine doesn't make it go up some then he will have to have surgery earlier rather than 3-4 months. Dr Rahimi said that he will have his surgery In January unless things change with his O2 saturations, so that made me happy it won't be during Addison's birthday. He said typical recovery time is 5-7 days with 2-3 days in the PICU and the rest in a regular room where Addison can come in and visit. I was glad to know that I will only have a few days away from her rather than a week. Nate is going to go with us next month so he can see the echo and ask any questions the. We may know a surgery date or closer to at that appointment. I'm excited to have the surgery and put that behind us but I am also very worried to hand my baby over to someone who is going to put him on bypass and cut his chest open. I try to cherish everyday we have and know we have the best Dr's working for him.