We have been slowly making progress for a plan on how to deal with the bloodflow to his brain.
First let me do some explaining about Eli's anatomy. A normal person is suppose to have 3 major arteries carrying the oxygenated blood from the aorta to the arms and brain. Eli only has two. One of his was taken and used during his first repair of his aorta as an infant. After it is taken he was "suppose" to develope collaterals off his left carotid to his left arm. This would have supplied enough bloodflow but he should not have had a blood pressure in the left arm.
On August 29th he had an MRA of his aorta, chest, neck and brain. We went to the doctor (a new one - he's an adult doctor that deals with these things in the cath lab). The test showed he has NONE of the collaterals (mentioned above). It also showed most of the blood that is suppose to go up the right vertebral and to the brain is skipping the brain and going straight to his left arm instead. He said that he did NOT recommend the orginal proposed plan of tying of the artery that is stealing the blood. He said if we did that he would loose his arm altogether. He is recommending Eli have a carotid to subclavian bypass. He now is sending us to ANOTHER new doctor (we've been to several this year). The problem is Eli may not be big enough for this surgery. If that is the case we will go have something temporarily done to reduce (not eliminate) the flow until he is bigger. But we have to wait to see this new doctor and get his opinion.
I have a lot of anger towards the doctors at our local children's hospital. They completely ignored us because this is so completely rare for a child to suffer this badly with this. In fact the day of the MRA one of the doctors said before they even did the test "it's not that, it's too rare". It makes my blood boil. It does feel good that there may be a light at the end of the tunnel. But all this was caused because they wanted to keep it simple with Eli. They don't take Eli's body and how his reacts into account before doing anything. We are trying to deal with a lot of emotions. So any prayers for my anger would be appreciated.
(((hugs))) I know the doctor mantra is that if you hear hoof-beats assume horses, not zebras, but the zebras are out there too and Eli seems to be one. Hopefully this will help you prove your zebra case in the future!
Natalie & Dan - June 2, 2001
Samma - Nov. 5, 2004
Tommy - Oct. 19, 2007
I'm so sorry. I will pray for you. I hope you can find a way around the anger.
Deb ................. DH Norm
DS Caleb, 13 ...... DS Patrick, 12
DS Isaiah, 8 ......... DS Thomas, 7
DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
William, 14 weeks, 4/11/12
Deb - thanks for the prayers with the anger. They are very needed.
Natalie - I hope this does. And I love that analogy.
Couldn't log on when I read your original post...
I'm keeping you guys in my thoughts!
Skyler Dylan 22 April 1999
Reed Aslan 17 June 2007 ~ 8 September 2008
Ivy Rayne 3 May 2009
Leo Spencer 2 Sept 2010
Forrest Reed 15 Aug 2012
Terribly difficult for everyone. I'm definitely thinking of you all!
I think anger is a waste of time...though certainly VERY understandable. All we folks can do is try to move forward.
Leo (3 1/2) with Malcolm the cat