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.

He is off the vent!

Ben made it off the vent today. He is less drugged and is interacting more with. They are going to start weaning more things tomorrow. Dan went back to GR to plow, and be with Ally. He will bring her back if the weather does not get too much worse. Other than that we have no news and we are doing well!

Ben made a sprint!

Well Ben is off the pacemaker for good. Although we have been having trouble making his sprints. He gets mad and uncomfortable when they have him breath on his own. He can't have the vent taken out until he does three one hour long sprints. He really has a tempter. The good news is he did one of them an hr ago, and with the help of some drugs, he stayed comfortable enough to do the full hour. The nurses are going to try sprinting again with the drug at 9:00pm and 3:00am, if it goes well we may go off the vent Monday. After the vent, we can work on the drainage chest tube and various other forms of life support and drugs. Slow but sure progress. Dan and I are really missing Ally. Dan could not go get her because the weather was too bad. Hopefully we will Tuesday if it clears up? Thanks for your prayers!

Good Boy

Benjamin was not able to get off the ventator today, but he just got off the pacemaker. Hopefully that goes good. He is doing well otherwise. He has been uncomforable, so they are keeping him pretty sedated. They started feeding him through the ng tube. He was slow off the vent last time, so this was expected. We are doing well too. Although Ally really misses us and has cried before bed while asking for us. We are going to try and bring her down here for a few days if the weather does not get too bad. Here are some pictures...

Benjamin is Hanging in There!

He had a rocky night with some irregular heart rythums, so they have him on a pacemaker. This is normal after the Hemi-fontan surgery. His heart is in shock from the nature of the surgery and is common. He is only on 30% ventator machine oxygen which is good. He may get off the vent tomorrow. Sorry I did not post any pictures yet - the RMH computer would not let us. :( We will try again at the hospital soon. Although the pictures are kinda scary. Keep checking the blog. Liz & Dan

Benjamin is Strong!

Ben made it off the bypass machine and is in recovery. Dr Hirsch said the surgery went well and things look good to her. We will get in see Ben in an hour. I am on pins and needles. Although I know he we be swollen and his upper boby made be extra swollen because of the Hemi-fontan surgery. We are so thankful to Dr Hirsch, she has performed a miracle again, now he just needs to heal. We our staying at RMH and Ally is missing us. But we are doing as good as can be. Keep checking the blog. I will post pictures later this week. Thanks for your prayers.

Sweet Ben!

Benjamin had some issues last night and we went to see the cardiologist today. He was on the max oxygen all night and could not keep 70 some of the time. He told us to head to Ann Arbor because the hospitals in Grand Rapids could not do much for him and we needed to be close to Mott's. We miss Ally already! She would not let go of my leg, when I was trying to say goodbye. It but tears in our eyes. I also missed my company holiday party, and my last work day for a while. I was kinda sad, but we need to do what is best for Ben at this critical time. Keep him in his prayers! As of now he is still scheduled for Thursday at 8:30am for surgery. It could change, we will see how it goes.