Friday, March 25, 2011

Back To Neurology

After talking with Eli's cardiologist about his blue neck, he ordered an ultrasound of the vessels. We had that at the end of the same week his cardiology appointment was. They were trying to coordinate an appointment we had already scheduled for that same day. I thought great why drive down there twice right? The first appointment time they tried to give me was only 30 minutes before and I thought there is no way. You need to leave time for it taking longer than expected, time to walk from point A to point B, check in time, etc. So then they gave me 1 1/2 hours before the other appointment and I thought surely that should be enough time. Well what was suppose to take 40-50 minutes took over 2 hours. And the location of the ultrasound they were doing typically are only performed 5 times a year total, if that. So the ultrasound tech they gave me had never actually performed the test. So another tech ended up coming in and taking over. Totally not the other techs fault. The last image she went to capture showed something VERY wrong. The picture she was trying to get, she had to place the wand on the back of Eli's neck. The vessels are suppose to be the same color. Eli's were NOT. One was CLEARLY blue and one was CLEARLY red. This means one of the vessels is carrying the blood the wrong way. So there were other images she was trying to get to give us an answer but it wasn't presenting itself for her. We went to the other appointment and I was fine. But as always the longer I have to think the more panic, reality, and not good thoughts set in. So I called the cardiologist to let him know how things went and that if he could he should look at the results. He called back and we talked. He gave me some explainations that totally made sense (you have to know Eli's not so normal anatomy to understand), but also said he wanted to talk to Neurology. Of course this was at 5pm on a Friday and Neurology was gone. And of course it takes time for doctors to talk, email, etc. because of how busy they are. I've been fairly successful at not worrying thinking about the test and what it means. That is until yesterday. The cardiologist and the head of the neurology department concluded that Eli needs to be seen at the very least for a consult. They can't rule out some of his symptoms as being caused by this wrong way blood flow.

Now of course I know nothing about how the brain or blood flow works. Talk about the heart and well I completely understand that. The more time my husband and I have to think and contemplate this information or the lack of information the more we don't really understand how it can be good that the blood is flowing the wrong direction. Of course with all this information (or the lack thereof) you have to take into account Eli's abnormal anatomy.

So there you have it. Back to neurology we go.


  1. I know some abnormal things can be totally normal in special kids. According to Hanna's amino acids, she should have kidney and liver failure, but doesn't...because it's part of her genetic makeup. Who knows...this could be normal for Eli! :) Keep us updated.

  2. Oh Angela, I know this has to be hard on your family. We are in prayer for you all. When is he going to see the Neurologist?

  3. Saying many prayers for all of you. I am sure it is going to be extremely difficult waiting for that consult and getting answers. {{{HUG}}}