Hard Night

I stayed at the hospital in Ben's room. He is not having a easy night. He is having fluid secretions build up in the lungs after being taken off the ventilator last night. It is very thick and they need to suck it out every hour. That is why I am up at 2:30 in the morning. He is not liking it at all and screams out. Although when they ask him to cough he does, so I know he is the same little boy that try's to please. He is now on the high flow oxygen to help while he gets through this phase. It is just part of the process because this can happen when you were on the lung bypass machine. Keep him in your thoughts.

Ben the Warrior

Hello! Ben is doing pretty good. They even working on getting him off the ventilator tonight. He is a fighter and has a temper even though he is not awake yet. They plan to try to take the vent off when he is more awake. Allison came up to the hospital, but we have not let her see Ben yet. It is a little scary. I will post a picture later. Dan is getting our key to Ronald McDonald House right now. So I am canceling our backup hotel. Thanks for all the support.

Surgery finished

The the surgery Is finished already. Ben got on and off the lung bypass machine just fine. The surgeon has not came up yet, but after she does we may get to see him in two hours. I was getting so upset that I did not have a update, but what I got was wonderful news. The surgeon just came up, and was very pleased. Gotta run, but I post again tonight. Thanks for all the prayers.

Round Three Begins

They took Ben in at about 7:30. He was medicated so he did not mind being separated from us. Dr Ramano had us sign the papers and she said the surgery will take 4-5 hours. We may have a update at 9:00. Thanks for the thoughts and prayers.

Weekend madness

Friday night right before 5pm, we got a phone call that we needed to redo Ben's blood work. They made a exception and we did it in Grand Rapids Saturday. Then after we got that call Dan ran to Meijer and my air conditioning went out on my car. We thought we were going to need to drive the beastly truck in the ramp in Ann Arbor. Dan spend Saturday trying to fix the car. We thought the compressor went out which would have been pricey. Luckily Dan is the man. He figured out a part was missing and could not find it. Finally he found it up in my engine and a bolt was broken. $2 later the air conditioning was fixed. We hope the blood work is good and we are ready to go Monday. We are enjoying some time at my sisters tonight.

Blood Work Down and the Timing

We are back in Grand Rapids after our dash to get Ben's blood work before the surgery. U of M requires it to be at one of there labs. So we drove into Brighton. The drive was uneventful. Ben pointed out every big truck, semi, and any construction equipment we saw. When we got to the lab we got in fast. Although the tricky part was getting his blood. Ben has very mad and angry even before we started the process because he knew it was coming. We had to poke each arm to get enough blood. His arms have never been easy to get a good point of access. The lab would not do his feet like in the hospital. But it was over quickly and he recovered fast as we went out to eat with my sister and friend Kristin. Kristin brought her son Mason the boys enjoyed the trains at Bagger Daves. I got the Pre-opt admission phone call while I was typing this. We need to be at the hospital at 6:30 on Monday July 1st. Ben will start fasting at midnight, so it will be easy because he will be sleeping. Then we will meet with Dr. Hirsch-Ramano and sign the papers for the Fontan. I will post an update as soon as I can compose myself. It is hard saying goodbye even through I am positive our prayers will be answered. Talk to you all soon.

Surgery Date

Today I got the phone call. Ben's Fontan surgery is planned for July 1, 2013.