We have returned from Rylee's appointment and I thought I would update here rather than emailing/facebooking everyone.
The short answer is we don't know anything. Doesn't sound too comforting but actually it is in some strange way. Keep in mind Dr Raley set the appointment up for us so we went into it a little blind.
Yesterday we saw Dr Jay Kincannon, a very sweet man (I'm sure he'd be thrilled to be described as sweet). He is, of all things, a Professor of Dermatology & Pediatrics specializing in Vascular Anomolies. This was surprise #1. I assumed we would be seeing a cardiovascular doctor. He is not convinced that it is an AV malformation; he also doesn't think it’s a hemangioma. He noted that the bone structure is actually larger. That was surprise #2. No one has ever mentioned her bone structure being involved—only veins and arteries. It seems to be larger from the shoulder blade all the way to the hand. Because of the bone structure being in the mix, he paged a Pediatric Orthopedic doctor and reviewed her status. That Dr agreed that it didn’t sound like an AVM or hemangioma. He added that we should have an ultrasound done of the renal system as somehow the kidneys could be involved in the diagnosis. That was surprise #3. Who would have thought kidneys might be involved.
Both Dr’s said it could be a number of things but as we have been told from the beginning the ONLY way to know anything is to have an MRI. That can be done in Tulsa since 'a scan is a scan'. If we end up going for treatment somewhere and they are not happy with the MRI done here, we can scan again.
Dr Raley’s office let me know this morning that St Francis will be calling to schedule the MRI and ultrasound. So the ball is rolling on that.
Thanks for your prayer and concern. It is hard to know what to think. It is sounding more like it may be something that is not treatable. That is ok—especially if is not life altering.
The short answer is we don't know anything. Doesn't sound too comforting but actually it is in some strange way. Keep in mind Dr Raley set the appointment up for us so we went into it a little blind.
Yesterday we saw Dr Jay Kincannon, a very sweet man (I'm sure he'd be thrilled to be described as sweet). He is, of all things, a Professor of Dermatology & Pediatrics specializing in Vascular Anomolies. This was surprise #1. I assumed we would be seeing a cardiovascular doctor. He is not convinced that it is an AV malformation; he also doesn't think it’s a hemangioma. He noted that the bone structure is actually larger. That was surprise #2. No one has ever mentioned her bone structure being involved—only veins and arteries. It seems to be larger from the shoulder blade all the way to the hand. Because of the bone structure being in the mix, he paged a Pediatric Orthopedic doctor and reviewed her status. That Dr agreed that it didn’t sound like an AVM or hemangioma. He added that we should have an ultrasound done of the renal system as somehow the kidneys could be involved in the diagnosis. That was surprise #3. Who would have thought kidneys might be involved.
Both Dr’s said it could be a number of things but as we have been told from the beginning the ONLY way to know anything is to have an MRI. That can be done in Tulsa since 'a scan is a scan'. If we end up going for treatment somewhere and they are not happy with the MRI done here, we can scan again.
Dr Raley’s office let me know this morning that St Francis will be calling to schedule the MRI and ultrasound. So the ball is rolling on that.
Thanks for your prayer and concern. It is hard to know what to think. It is sounding more like it may be something that is not treatable. That is ok—especially if is not life altering.
2 comments:
I am glad that you are in the blogging world, I am obessesed! I have been praying and will continue to pray for God's will, wisdom for the Dr's and peace of mind for you and Ed. Love you!! It was awesome to see beautiful girl tonight!
Kathy I'm so glad you're back to your blog. I love hearing from you and the details in this post were wonderful. I'm still praying for Rylee. I've been prompted, everytime I'm holding her, to pray for her body (that's not something I normally do with babies - God is working in and around her :) I love you.
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