VISITS
Tuesday, August 23, 2011
So cute!
Monday, August 22, 2011
Wednesday, August 10, 2011
Elyse -
Elyse had an emergency MRI/MRA of her head, neck and heart (just the aorta) Friday last week. The scan was originally scheduled for Aug 17 as part of her follow up. Some stuff came up and it was decided that it was best we get them done ASAP. Yesterday right as i was getting to leave work, one of her doctors in Milwaukee called me and explained to me what was seen on the scans and what was discussed during their Vascular meeting...
Eyes - The report says that her right optic nerve is small. It's nothing new. It was seen in prior scans. On Friday, they mention it was called... Left optic nerve atrophy (Optic nerve atrophy causes vision to dim and reduces the field of vision. The ability to see fine detail will also be lost. Colors will seem faded. The pupil reaction to light will diminish and may eventually be lost). Elyse's eye doctor was called and she wants us to continue doing what we've been doing. She's supposed to call me something time this week, to discuss her optic nerve. Yes. I'm wondering what's going to happen to her vision, if she has Optic nerve atrophy. This is the first time i actually looked it up.
Her ARCH (heart) - On friday they mentioned Possible subclavian steel syndrome. Hm. I won't go into details, because i don't know how to explain it. The team has faxed Elyse's cardiologist the report. They want an ECHO (a ultrasound of her heart) done. As of right now, there is no restrictions on their part when it comes to cardiac.
HEAD - There was a change here. They saw an increased narrowing of the right internal carotid artery (major arteries of the head and neck that supply blood to the brain). We knew it was already narrow, but now its even more. They are concern. They want us to start giving her Aspirin everyday to help prevent a stroke.
They also did another type of study called MR perfusion. She said it measure the timing of the blood flow - to reach the brain. And because of this narrow carotid artery, the blood flowing to the right side of the brain, is much slower than the left side. The good thing is that the blood is flowing. It would be bad if nothing was. That's why they decided that they are going to rescan her in 6 months to make sure nothing else changes. They also want us to start seeing the neurologist again.
After she explained the carotid artery changes.. i asked, What does this all mean. meaning.. now what? What will happen to Elyse. She couldn't give me an answer. unfortunately, they don't know. She said, elyse might live a normal uneventful life.. or it can definitely put her at a even higher risk for stroke. We just don't know. That's why they are doing many studies with children with PHACE Syndrome.
I admit. It's scary. Very scary. I knew they were concern when they finally decided it was time for her to be on aspirin. In the years prior, she was ok. There hadn't been any changes until now. I'm very grateful that she has this team of doctors. I have confidence in them. I know my little girl is in good hands.
Eyes - The report says that her right optic nerve is small. It's nothing new. It was seen in prior scans. On Friday, they mention it was called... Left optic nerve atrophy (Optic nerve atrophy causes vision to dim and reduces the field of vision. The ability to see fine detail will also be lost. Colors will seem faded. The pupil reaction to light will diminish and may eventually be lost). Elyse's eye doctor was called and she wants us to continue doing what we've been doing. She's supposed to call me something time this week, to discuss her optic nerve. Yes. I'm wondering what's going to happen to her vision, if she has Optic nerve atrophy. This is the first time i actually looked it up.
Her ARCH (heart) - On friday they mentioned Possible subclavian steel syndrome. Hm. I won't go into details, because i don't know how to explain it. The team has faxed Elyse's cardiologist the report. They want an ECHO (a ultrasound of her heart) done. As of right now, there is no restrictions on their part when it comes to cardiac.
HEAD - There was a change here. They saw an increased narrowing of the right internal carotid artery (major arteries of the head and neck that supply blood to the brain). We knew it was already narrow, but now its even more. They are concern. They want us to start giving her Aspirin everyday to help prevent a stroke.
They also did another type of study called MR perfusion. She said it measure the timing of the blood flow - to reach the brain. And because of this narrow carotid artery, the blood flowing to the right side of the brain, is much slower than the left side. The good thing is that the blood is flowing. It would be bad if nothing was. That's why they decided that they are going to rescan her in 6 months to make sure nothing else changes. They also want us to start seeing the neurologist again.
After she explained the carotid artery changes.. i asked, What does this all mean. meaning.. now what? What will happen to Elyse. She couldn't give me an answer. unfortunately, they don't know. She said, elyse might live a normal uneventful life.. or it can definitely put her at a even higher risk for stroke. We just don't know. That's why they are doing many studies with children with PHACE Syndrome.
I admit. It's scary. Very scary. I knew they were concern when they finally decided it was time for her to be on aspirin. In the years prior, she was ok. There hadn't been any changes until now. I'm very grateful that she has this team of doctors. I have confidence in them. I know my little girl is in good hands.
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