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.

Sweet Benny!

Ben has recovered somewhat from the crazy weekend. On top of all his heart issues he has horrible acid flex which has not help his situation at all. We are trying to reduce his reflex with thickened feedings and more Zantac. Sometimes he holds his breath when he gets the reflex which adds to our oxygen problems. He has always struggled with oxygen since he has a small sano shunt, and getting bigger is making it worse. We are all scared and are praying that everything goes well. At least we know it is time and it is what Benjamin needs. Thanks for checking in.

Hanging in There!

Benjamin landed into the emergency Friday night. His oxygen was way too low and the cardiologist told us to head in. We think it may be because his oxygen regulator was not working property. Then Ben had a crash. Airway came out and got us a new one yesterday. He should be able to come home tonight and we can hopefully keep things stable until his next surgery. Our four day weekend seemed like it was more stressful than anything. I feel sick to my stomach that I did not catch the bad regulator sooner. But everything is going well otherwise and we are gearing up for Ann Arbor. We thought we might head there this weekend and were packed. But they think he can make it till the 9th. Keep thinking and praying for Ben!

Quote from Allison to Ben

Hi Ben! I Love You!

Sweet Baby Boy

Benjamin is doing fine, although you can tell he is showing lots of signs that he needs the next surgery. He has been requiring more and more oxygen and he can be fussy. He is also slowing down on growth. The only thing that really makes him happy is too be held lately and to be in his swing. We ran out of batteries today which was horrible. :) Right now we just have to hang on until his next surgery and pray that everything goes well. I have faith in Dr Hirsch and am hoping to have Ben home by Christmas to be with Allison. Thanks for checking the blog.

Ben had a Hard Night

Well after I posted yesterday Ben had a bad spell that almost put him in the emergency room again. I got him to recover myself and we talked to the cardiologist today about how to prevent this from happening in the future. So hopefully we can avoid this oxygen problem, by using more oxygen to make it easier on Ben. His next surgery will be Dec 9th. Please pray for our little man.

No News is Good News

Tomorrow we have a cardiologist apt to find out more on the care for Ben. He is doing really well! He has not required much oxygen the past few days. He is very smiley and such a sweet boy. Keep him in your prayers and we will post again soon on what we find out. Here are some pictures of Ben and his sister Allison on Halloween!

Benjamin is doing GOOD!

Today Ben weight was 11 lbs 1 oz. The 24 calorie diet is paying off. Grandma Schuelke brought over some Halloween books for the kids and they have been chilling inside dodging the windy weather. The nurse said Ben looks awesome! Her last visit is next week as she feel comfortable with how we are caring for him. Not much to report, but I am sure I will have some news soon. Have a wonderful day.

October 25, 2010

Hello Friends & Family,
I thought I would start a blog on Benjamin. My friend Jen has been doing it and I think it will be easier to share updates on this site. Benjamin is doing very well after having to go to Ann Arbor Oct 8th. They were planning on the next surgery to be on Nov 5th. Although the cardiologist said that may change since he seems to be doing well. They like to do the Hemi-Fontan surgery around 4-6 months because the lung development is better for surgery outcomes. But if they need to do it sooner they will. He is on oxygen as he needs it and we have pulse ox monitor to tell us if they are too low. Getting back to work has been hard. But the Grandmas are doing good.

Last Thursday we went to the emergency room again, but giving Ben a little more lasix did the trick and Ben was home is a matter of a few hours. Keep checking the blog for updates and photos as I am not going to send emails anymore.