We are glad to be home!

Ben is doing well. Although his weight is not improving very good and getting used to all of his medications has been a trip. He needs so many more now.  I am finally starting to get more comfortable with all the medications. I also hope his weight will improve so we do not need the ng tube again. I am getting the Grandparents ready to care for Ben again, as I am starting back to work Mon. We have Cardiologist apt tomorrow to check him out. I hope everyone had a Merry Christmas and enjoy the New Year.

We Made It Home!

They got Ben's blood pressure under control with medication. He will have to take it three times a day. So they sent us home :) We are starting to slowly get thing back in order. Happy Holidays to all! Being home is the best gift of all for us.

Blood Pressure?

Ben's blood pressure is pretty high. They have been trying to manage it with drugs. This is fairly common for these babies after the hemi-fontan, but his has been excessively high so they may keep us here longer. But we are well, and his eating is back to all bottle. We are just hanging in there and can't wait to come home. Talk to you soon!

Benjamin is improving!

Things are looking good. Our little guy is doing very well. We are just working on the feeds and healing. Ben is sore and the feedings are getting better from the bottle. He still has the ng tube in, but I do not think he will have it many more days. Although he may have it home for a little while. They are talking like we may get to be home for Christmas. :) Maybe the beginning of the week. We need to be cautious for a few weeks because some of these kids get collapsed lungs due to the new pressures in them.  So far so good, he is strong and starting to be more smiley. We just don't want to push it. Going home is kinda scary at times, but we are looking forward to it. Allison is at Grandpa & Grandma's McCarthy, but she did not want to leave yesterday. We are looking foward to being under our roof again, and settling back in. There is always a ton to do when we get back. Plenty of appointments as well. Thanks for your thoughts and prayers.
The McCarthy's

Ben is doing better!

Our little guy is doing pretty good. Although he still is having some trouble with his stomach. Hopefully tomorrow we can try the bottle on him. They might remove the arterial line tomorrow as well. Allison is going back to GR tomorrow with Grandma. Enjoy the photo!

Ben is doing fine!

He got his chest tube out today and we are slowly starting feeds with the nasal gastric tube. We will work to the bottle in time. He still seemed out of it, but he did crack a smile today. Moderate care concerns me in that he is not monitored as well. Dan and I have been taking shifts to sit with him as much as possible. His oxygen levels are awesome and he is off oxygen. That is just HUGE!  Ally is happier that she is with us. Gotta run, thanks for your prayers!

One step forward one step back!

Benjamin is in moderate care. Although all day he has refused to eat and has been sick to his stomach. It has not been pretty. He looks really sad. They are going to try and settle his stomach and then start feeding through the ng tube again. Keep him in your prayers.