Today Garet has officially been taken off all the IV meds. He is now talking all of his meds by mouth. I think right now they have him on 6 different kinds of medicine. All of them working together seem to be doing a good job of keeping him stable. I talked to grandma Rose earlier since I am back to work, and she said that Garet has a visit from some firemen. I guess some firemen come in about 1 a week to visit the kids in the pediatric unit. They stopped in Garets room today and gave him a fireman pillow. I can not wait to take pictures of Garet and his pillow to show you all. The also came in today and did an EKG and this afternoon they came in and did an ECO (ultra sound of the heart). SO hopefully tonight some time one of the doctors will come in and let us know if anything has changed. I know tonight some time after 8 I will be trying to find a doctor to ask about the ECO. We were told when we were in the PICU that they have to read all the ECO's each by 8 at night.
Garet is doing really well with his eating. He needs to eat at least 20 ounces a day in order to get enough nutrients to maintain his current weight. Anything over 20 is good and will help him to continue to grow. The past couple of days he has been eating right around 24 or more ounces. We are now back up over 10 pounds. 10.1 pounds as of Tuesday, so we are steadily gaining weight and that is very good. I am also going to see if they will weight him tonight or in the morning so we can see how much he has gained in the past 2 days. Right now a healthy baby should be gaining an ounce a day until they hit three months and then they should slow down a little bit and be gaining a 1/2 ounce each day. That is what I have found online as a guide line. If we can stay close to those stats then that shows real growth. I don't think we will have any problem doing that. As long as he does not over eat he does not have any problems keeping his food down.
I know I have been trying to keep you all up to date on how Garet is doing but I have a hard time explaining exactly what is going on with his hear, so I found a great web site that does a great job of explaining his condition. I wanted to share that with you all. http://www.childrenscardiomyopathy.org/ is a website that will answer more questions that maybe I have not been able to answer. The condition that he has is called Pediatric Dilated Cardiomyopathy. It is a chronic heart issue and right now there is not cure for it just ways that they can help you to live with it. Please take a look if you have any questions or just want to know a little more about what is going on.
Thank you again for all the thought and prayers. It looks like Matts dad is helping to put together a bike ride here in the surrounding Jacksonville area to help with financial support. As soon as I find out more information on it I will let you all know. I believe that they are trying to plan it for some time at the end of this month. I don't think you necessarily have to have a motorcycle to participate. I think they are going to travel in between a few different places here in town and then have things going on at those places as well. So for those of us that do not have a bike, we can just go to one of the locations that they will be traveling to and have some fun there. Like I said as soon as I know anything more I will let you all know.
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