Thursday, May 23, 2013

Waiting for discharge

Chilling watching Cars2

Pressures looked good

Ben cath did not start until 12:00. We just finally met with the doctor at 3:30. He did very good and we will get to see him soon. Although we need to stay here until 8:00 so they can observe him. Dr Armstrong feels that he is ready for the next step. His pressures are appropriate for the Fontan surgery. We plan to schedule it for the end of June or in July.
Talk to you soon and thanks for checking in.

Wednesday, May 22, 2013

Tests went well

Ben disliked his chest x-ray, but it was pretty fast and painless. Then they sedated him, but we decided it was best not to fully sedate him. We actually would have liked to not give him anything, but his personality makes him need something or we would have not gotten good results. So we gave him a nasal drug that made him chill out rather than being knocked out. His Eco and and EKG looked great. No serious problems. If his cath pressures look good tomorrow, they plan to schedule his Fontan surgery this summer. We will need to fast again tomorrow. The cath will be different than his last one. They will go in at two points. On his groin and under his collarbone. The cath goes right in his heart and there are risks. They may need to put some coils in, if they find there is some vessels that have formed. Wish Ben luck tomorrow and have a good one.

Ann Arbor

We have arrived safely. Ben is playing in the waiting room waiting for a chest x-ray. The new hospital is beautiful.

Tuesday, May 7, 2013

U of M Called Today

We scheduled the pre-opt appointments for May 22nd and 23rd. Ben will have his chest x-ray, ekg, sedated eco, and cath. Then they plan to schedule his surgery for 3 to 6 weeks after that if things look good for surgery. Things are really moving fast. Thanks for thinking of us.

Monday, May 6, 2013

Hello All,
The last few days have been packed with many things and beautiful weather. Benjamin had a shallow test at Mary Free Bed and he is having some trouble with chewing up his food correctly. He tends of shallow whenever possible because of the weakness of his jaw muscles. This is part of his Cerebral Palsy. We are going to start a six week chewing therapy for him, because we do not want him to choke. He still is having trouble with his left side and we plan to do more therapy with it. Although he is really becoming more active and mobile. Ben is not walking, but he still gets around. He are really noticing him being bluer looking because of him being so active. Also he is growing so long. On Friday we went to Orthoseat at Mary Free Bed and Ben is getting a bus accessible stroller to go to the Ottawa Area Center this summer if his surgery does not get scheduled for then. But we are hoping it gets scheduled for sooner than later due to Ally starting Kindergarten this fall. Things are going good, but we are so busy with Ben's therapy. We may think about Botox therapy in the future as well. We went to Faith's Walk on Saturday to support heart children and the continued research to make there lives longer and better. Pictures are still to come because I am having technical difficulties, but here is a older cute one.

Wednesday, May 1, 2013

Delayed Post

Sorry for my delinquency on this post. My excuses are vast, but I still should be posting more regularly. I will also get some pictures up in the next few days. We went to the Fredrick Meijer Gardens on Saturday. :) We have not had any huge news until today. Ben had his cardiologist appointment. Dr. Lacina feels that it is time to start the process of scheduling Ben's Fontan surgery. It should be this fall 2013. Ben is getting bigger and becoming more active. He is blue looking more than he used to be. It is just getting to be time to start the next step. I am kinda in shock, although I knew it was coming. It is a hard thing to get scheduled. Below is a link showing some videos and explanations of the procedure if you are interested.


Please keep us in your prayers. I will post again soon with updates on more appointments this week.