Saturday, September 20, 2008

Benjamin/Anthony: Things in Motion

Here's an Update from Anthony's Mom:

Well, have the last few weeks been terribly busy....Preschool started for the bigger boys, early intervention started for Anthony and my youngest son Anderson. I thought school would go over well since Anthony was so used to children, playing, laughing, etc but i was wrong! Anthony does not like school, or should I say doesn't like to be alone in there without me. He has cried now for 2 weeks if I leave the room. I was standing on the other side of the room and he still cries. Slowly I am leaving the room...10 minutes...returning....15 minutes....returning.....etc. He hates it. He seems to do better when Dad drops him off. Strange that it must be a Mom thing I guess. I started my Masters Degree, my own business, and somehow maintained 2 part time jobs....and traveled 100 miles several times since August for doctor appts for Anthony's heart and teeth.

We had his oral surgery one week ago last Thursday, I forget the date...he did pretty well. He had 3 teeth totally pulled, then 6 capped, crowned, filled cavities to boot. Poor guy. I don' t think he knew what hit him. We had his heart catheterization the week before. He had a reaction to the morphine during the heart cath and had awakened on the table while the doctor was in his heart!!!!!! I couldn't believe it!!! They gave him so much drugs to get him quiet, that he was quite for too long and didn't wake for almost 6 hours...but during that time, he had awoke looking for us, and couldn't recognize us. He was snowed. He cried and cried for us. It broke my heart. I could only talk to him and stroke his head. I knew he was so out of it that he wouldn't know us. But its another thing to see that little life crying for you and not know you at the same time.

Test results of his heart cath determined that he would need open heart surgery soon...in fact within the next month or two. His cardiologist forwarded Anthony's medical files, heart cath, oral exam and surgery, history of 2 previous surgeries, etc to a VERY well know severe congenital heart defect pediatric surgeon/specialist at the University of Michigan. He has earned the right to "choose" his patients. We were hoping we would be chosen. As of this past Tuesday, we were notified by Dr. Bove's nurse (pronounced Boo-vey) that we were chosen. He accepted us and our surgery needs. We feel very blessed by this. He is going to have the best in the nation. This doctor specializes in congenital heart defects, and the more severe the better. We met his qualifications. Aside from being accepted, his surgery is scheduled for Oct.22, 2008. Dr. Bove will be doing the "Fontan" procedure, as well as closing off the main valve that currently has a leak, and closing down the entire left side of Anthony's heart. If that is not enough, the doctors will also make Anthony's heart run more efficiently by rewiring all of the blood flow in and out of his heart. I can't even imagine how someone so incredibly skilled could hold my little boys heart in his hands and make it work better, yet closing off so much...I can't imagine how this little boy will survive all of this. I just know he will. This is a one time effort to make his heart better. There are no more chances. He will not need anything in the future, as far as surgery when he gets older, unless there is a complication and even then the doctor said there isn't much more they could do.

I will be staying in Ann Arbor, Michigan for approximately 10-20 days. I am on a waiting list for my accommodations. I applied at 3 places in hopes that I can stay close to Anthony. I am not sure of the rules in a facility like this and how long I can stay in the room with him.

Paul, my husband, will maintain life here at home for the other 3 boys. We believe to keep their routine as normal as possible for them. I am taking a leave of absence from my part time jobs for approximately 4-6 weeks. I am not sure what rehab is like for a toddler, but I just want to be there for him.

I am hoping to have my laptop with me for easier communication with everyone looking out for Anthony. I will try to post daily so that I can have a log of his progress.

Thank you for checking in with us!
Carrie

Life, Love and Laughter,
Amanda

Starfish Foster Home
http://chinesestarfish.blogspot.com
www.chinesestarfish.org
1348.812.4847


2 comments:

shell said...

Amanda
Please send my prayers on to Anthony's mother. We will be praying for God's healing to his heart. Is there a website where we can follow his progress following his heart surgery?

Fliss and Mike Adventures said...

Hoping that all goes well for him... what a little trooper but oh he looks SO happy...