Surgery went well today and Samuel is in recovery. He now has an external shunt until the infection clears and the neurosurgeon will then put another shunt in as early as next week or as late as 2 weeks. He cannot come home with the external shunt in place.
They will start feeding him later today and we are praying that his stomach will tolerate the new set up and do well.
We also got the results of another ultrasound on his brain and they discovered that he is missing a septum pellucidum, which may cause some endocrinal malfunction. I copied the info below from Wikipedia:
"Absence of the septum pellucidum, caused by mutations in the HESX1 gene, is associated with septo-optic dysplasia. This may result in hypothalamic dysfunction and hypopituitarism, as well as problems of vision, coordination, and intelligence, among other abnormalities. One famous reference to an abnormality of the septum pellucidum would be the movie Rocky V. In the movie, the main character Rocky Balboa is forced to retire due to brain damage sustained throughout his career." (I had to keep the Rocky reference in because we have jokingly been calling Samuel Rocky Balboa because he has such fight in him)
We were hoping that the ultrasound would show how the brain tissue is growing, but they did not look for that in this ultrasound. We also have a care conference on Friday which is where all of the doctors and discharge coordinator, etc, sit in a room and we talk about Samuel's course of treatment and the discharge process.
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2 comments:
Hi there
you don't know me, but I've been following the incredible story of your son for awhile now and have been so thrilled at his fighting spirit and his resolve to "get on with life"... What a fighter he is! In reading your story of your son, I thought of another little boy I know. I KNOW that no 2 children are alike and Samuel has some tough days ahead, but wanted to share in hopes it might be uplifting. My dd has an Autism Spectrum disorder and she does Therapeutic horseback riding. She was asked recently (in past year) to ride in a few demonstrations where she was paired with the most amazing little boy (age 6). His mom (and unfortunately I dont have the name but could try to get) shared that he has a rare brain anomaly. Only a very small portion of his brain is formed correctly. He is still non-verbal (altho signs like crazy) and he wasnt walking til recently (AND now playing soccer). I'm not sharing cause I want to promote therapeutic riding or anything like that.. just that he is amazing and had a HUGE mountain of challenges in front of him and has overcome so much. I did a short "one true media photo montage " of the two children recently and just thought it might be uplifting. You are incredible as are your children. I hope/pray you soon will be home. Maybe not for Thanksgiving, but for Christmas... Take good care
Here's link to photo montage:
http://www.onetruemedia.com/shared?p=69a75712ff80d128c0c046&skin_id=601&utm_source=otm&utm_medium=text_url
My dd as does the little boy she rides with , has some significant weakness issues on one side of her body (not sure which side his are, but think they both have issues on right side)... take good care
Leigh
I just read your blog from start to finish and I just wanted to let you know that Samuel and your family will be in my daily prayers from this day forward. You are such a strong corageous family, and I am so appreciative of your sharing your story through this blog.
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