Wednesday, May 26, 2010
CT scan rescheduled
I got a call today from radiology and there seems to be a problem with the insurance. So, we are stalled on getting his CT scan and I had to reschedule for next Thur. morning on June 3rd. Quite frustrating but some what relieved that he doesn't have to go tomorrow. I'm just glad the insurance will work out and he will get his scan before he see's the neurologist on the 7th.
Tuesday, May 25, 2010
The Begining
This is the begining of Hoss's journey with Sagittal Craniosynotosis (SCS).
Hoss entered the world fast and furious on February 8th 2010. It didn't take long for us to notice the shape of his head and the prominent ridge that ran down the center of his head. Grant would comment on how "torpedo" like it was, just how he entered the world! Hoss's head didn't change much though over the next couple weeks and so when he had his first check-up, the Dr. took note of his head shape and the noticeable ridge that ran down his head. The Dr wanted to wait a couple more weeks to see if his head would begin to round-out. This of course scared the hec out of me and I of course went home and googled key words from the appointment: sagittal, suture, head shape....I spent hours trying to find out what may be going on with his head. The Internet did its job of sending me into panic mode and I was able to get a pretty good idea what may be going on with his head shape. After another week or so, it didn't take long for us to figure out we were going to be sent to a specialist, his head shape wasn't changing. At his 4 week check-up, we were referred to see a Pediatric Craniologist at Mary Bridge Hospital, Dr. Ehret. My heart sunk into my stomach.
Dr. Ehret made his conclusion within 30 seconds of meeting us, Sagittal Craniosynotosis, it was obvious to him.
Sagittal Craniosynotosis is when the skull fuses prematurely along the Sagittal Suture. Babies have free-floating skull plates separated by fibers called sutures. This allows babies to pass through the birth canal easily and to allow the skull to grow with the brain. Craniosynotosis is premature fusion of a suture, which restricts skull growth. Premature fusion is most often said to be unknown but also thought to be linked to pressure in the womb. Rarely premature fusion can be gene related but it is a very low percentage.
Interestingly, if you know about the labor process, Hoss dropped into the Zero Station 3 weeks before he was born. He was stuck in my pelvis and probably had very minimal movement, this is when we expect his head fused.
So what this means for Hoss is that his skull can't widen so it is accommodating by lengthening. Fusion of the sagittal suture results in a long and narrow skull, with or without bulging of the front or back of the head. The good news is that he shouldn't have any mental problems from this condition. If we didn't opt for surgery he could risk issues due to increased pressure on his brain.
The word surgery is not easy for any mother to hear and hearing that they are going to cut his head open made it frightening!! The Procedure to fix his skull is invasive and will most likely require a blood transfusion, 90% do. There will be the Craniologist, Neurologist, and a Plastic Surgeon on board. This type of surgery is optimal at 6 months of age when the bones are not too soft so they stay in shape when re-molded by the plastic surgeon. So far we have only seen the craniologist and will be seeing the neurologist after his CT scan within the next couple weeks. From what I know about the surgery, it will be about 5-6 hours and about a 4 day stay at Mary Bridge Children's Hospital in Tacoma, WA. They will do a zig-zag incision from ear to ear and will remove bone, re-open the closed suture, and mold his skull back to a normal shape.
This Thursday, May 27th at 9am Hoss will go in for his CT scan to confirm and evaluate his skull. He will have to be put under for this so please be praying for him that morning. I am nervous, so put me in your prayers as well.
It has been an emotional journey so far for me, I have been praying everyday, along with others, that Hoss would be healed. I know through faith and prayer Hoss will get through this and he will be taken care of.
I have also found a support group through: http://www.cappskids.org/board/index.php?s=a4a96678ed6d8c6cf730d925e660100c This has helped me find other families who have gone through this and had helped me understand the journey of surgery and beyond. Here is a link to a sweet boy name Dean who just went through the procedure successfully. It is a media slide show: http://secure.smilebox.com/ecom/openTheBox?sendevent=4d5459324f4467794e7a553d0d0a&blogview=true&campaign=blog_playback_link
I do hope that this blog will not only keep family and friends updated and informed but also help someone in our situation as well.
Thank you for your thoughts and prayers!
-Angela
Hoss entered the world fast and furious on February 8th 2010. It didn't take long for us to notice the shape of his head and the prominent ridge that ran down the center of his head. Grant would comment on how "torpedo" like it was, just how he entered the world! Hoss's head didn't change much though over the next couple weeks and so when he had his first check-up, the Dr. took note of his head shape and the noticeable ridge that ran down his head. The Dr wanted to wait a couple more weeks to see if his head would begin to round-out. This of course scared the hec out of me and I of course went home and googled key words from the appointment: sagittal, suture, head shape....I spent hours trying to find out what may be going on with his head. The Internet did its job of sending me into panic mode and I was able to get a pretty good idea what may be going on with his head shape. After another week or so, it didn't take long for us to figure out we were going to be sent to a specialist, his head shape wasn't changing. At his 4 week check-up, we were referred to see a Pediatric Craniologist at Mary Bridge Hospital, Dr. Ehret. My heart sunk into my stomach.
Dr. Ehret made his conclusion within 30 seconds of meeting us, Sagittal Craniosynotosis, it was obvious to him.
Sagittal Craniosynotosis is when the skull fuses prematurely along the Sagittal Suture. Babies have free-floating skull plates separated by fibers called sutures. This allows babies to pass through the birth canal easily and to allow the skull to grow with the brain. Craniosynotosis is premature fusion of a suture, which restricts skull growth. Premature fusion is most often said to be unknown but also thought to be linked to pressure in the womb. Rarely premature fusion can be gene related but it is a very low percentage.
Interestingly, if you know about the labor process, Hoss dropped into the Zero Station 3 weeks before he was born. He was stuck in my pelvis and probably had very minimal movement, this is when we expect his head fused.
So what this means for Hoss is that his skull can't widen so it is accommodating by lengthening. Fusion of the sagittal suture results in a long and narrow skull, with or without bulging of the front or back of the head. The good news is that he shouldn't have any mental problems from this condition. If we didn't opt for surgery he could risk issues due to increased pressure on his brain.
The word surgery is not easy for any mother to hear and hearing that they are going to cut his head open made it frightening!! The Procedure to fix his skull is invasive and will most likely require a blood transfusion, 90% do. There will be the Craniologist, Neurologist, and a Plastic Surgeon on board. This type of surgery is optimal at 6 months of age when the bones are not too soft so they stay in shape when re-molded by the plastic surgeon. So far we have only seen the craniologist and will be seeing the neurologist after his CT scan within the next couple weeks. From what I know about the surgery, it will be about 5-6 hours and about a 4 day stay at Mary Bridge Children's Hospital in Tacoma, WA. They will do a zig-zag incision from ear to ear and will remove bone, re-open the closed suture, and mold his skull back to a normal shape.
This Thursday, May 27th at 9am Hoss will go in for his CT scan to confirm and evaluate his skull. He will have to be put under for this so please be praying for him that morning. I am nervous, so put me in your prayers as well.
It has been an emotional journey so far for me, I have been praying everyday, along with others, that Hoss would be healed. I know through faith and prayer Hoss will get through this and he will be taken care of.
I have also found a support group through: http://www.cappskids.org/board/index.php?s=a4a96678ed6d8c6cf730d925e660100c This has helped me find other families who have gone through this and had helped me understand the journey of surgery and beyond. Here is a link to a sweet boy name Dean who just went through the procedure successfully. It is a media slide show: http://secure.smilebox.com/ecom/openTheBox?sendevent=4d5459324f4467794e7a553d0d0a&blogview=true&campaign=blog_playback_link
I do hope that this blog will not only keep family and friends updated and informed but also help someone in our situation as well.
Thank you for your thoughts and prayers!
-Angela
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