Well, I got a call this last Friday afternoon (July 16th) from the neurosurgeon's office and they had to reschedule the surgery for the 25th of August because the cranio surgeon had a conflict in his schedule. I am not particulary thrilled about that but there isn't much I can do about it.
Surgery will begin at 8am and Hoss will get checked in at 6am at Mary Bridge, surgery should last until around noon and he will be in the pediatric ICU (PICU) and should move to the main floor the next day for 3-4 more days.
The next decision I have coming up is about blood donation for Hoss. Since he will most likely need a blood transfusion Grant and I wanted to donate blood for him. Apparently there is a risk for blood relative donation called Graft vs Host disease which is rare but also deadly, oh joy! I am going in for some more information on this topic and to learn about the other risks that go along with blood transfusion. If you know about this stuff or have an opinion, please leave a comment or email me. There is risks either way blood bank or blood relative and the botttom line is that we trust that God is protecting this little guy. If we donate it will be two weeks prior to surgery and of course insurance doesn't cover it. How backwards is that? There is always a need of blood donations and yet they want to charge you to give your own blood for someone close to you!
We will see Dr. Eheret the cranio/plastic surgeon this Wednesday, I think he wants to look at the scans and talk about surgery. We haven't seen him since we first took him into be evaluated. I will update that evening.
Thank you for your thoughts and prayers, I know they are working. I have been fairly calm, or more calm through this journey. My breakdowns are rare and I know Hoss is in good hands. I am definately concerned about this blood donation risk right now and worried about how well Hoss's pain will be managed after surgery. He is so precious and even though he won't remember this I just don't want him to be in pain! Thanks for keeping us in your prayers!
Monday, July 19, 2010
Tuesday, June 29, 2010
Surgery date
Well, I finally have a date for Surgery; Wednesday August 11th
I am super anxious now that it is scheduled and can't wait for it to be done and over!
I will add times and more details soon...
I am super anxious now that it is scheduled and can't wait for it to be done and over!
I will add times and more details soon...
Monday, June 7, 2010
Neurosurgeon visit
Hoss had his first visit with the Neurosurgeon this morning. Dr. Morris gave more detailed information on the surgery procedure, got us rolling with the blood bank donation process, and answered my questions and concerns. No surgery date still! He will be scheduling that with the craniologist hopefully very soon, I know everyone is anxious to mark the date on there calender, as am I.
A few things I learned today from our visit; Dr. Morris does this procedure about 9 times a year, so it is a fairly common procedure for him. Hoss's head growth is in the 95th percentile, so his brain is growing great! The surgery (incision) will not increase risk for head injury while playing sports. Nursing should be just fine after surgery, and we can donate blood for him (hopefully compatible)!
That is it for now and I will update when we get the surgery date and go to the blood bank. I need to schedule an appointment with Dr. Eheret the cranio guy again but we won't see the neurosurgeon until surgery day.
A few things I learned today from our visit; Dr. Morris does this procedure about 9 times a year, so it is a fairly common procedure for him. Hoss's head growth is in the 95th percentile, so his brain is growing great! The surgery (incision) will not increase risk for head injury while playing sports. Nursing should be just fine after surgery, and we can donate blood for him (hopefully compatible)!
That is it for now and I will update when we get the surgery date and go to the blood bank. I need to schedule an appointment with Dr. Eheret the cranio guy again but we won't see the neurosurgeon until surgery day.
Thursday, June 3, 2010
CT Scan and Sedation
I meant to post earlier but today has been busy, so I apologize if anyone was looking for an update on the sedation today.
Hoss had his CT scan this morning, everything went well and I am sooooo glad!! He had to fast this morning before his sedation and I can't believe that I couldn't get him to wake-up to nurse at 5am. I really was hoping not only to get some food in his belly but to make sure his veins were plump for the IV. He was absolutely not going to wake-up, I tried pretty hard too!
Of course traffic was worse than anticipated but we still made it on time to the appointment at Tacoma General. My mom and my sister were a big help and met the kids and I there to help keep Sophia busy and for support. The nurse was really nice and numbed up all his little wrists and ankles for possible pokes (two attempts in the wrist). I of course didn't want the IV in his head but that is where all the good veins are! Hoss was such a little trooper, he ended up having to get the IV in his head (which didn't get numbed first) and was put to sleep pretty quickly after that. It is really strange to see how fast that drug works and it is definitely a weird feeling to see your baby sedated. The scan was like 5 minutes but they had to sedate him because the Dr's need a really clear scan for surgery. He woke-up 35 minutes after they administered the drug, I gently stroked his cheek and and talked to him to wake him. He gave me a sweet smile and I couldn't have been more relieved to see that precious grin. He was a little groggy over the next 15 minutes but cooing, and hungry. I was really happy everything went just right!
Thank you to everyone who thought of us through prayer or other ways! It does make a difference! We will see the neurologist on Monday morning next week to follow up on his scans and get a surgery date. I will update then.
Hoss had his CT scan this morning, everything went well and I am sooooo glad!! He had to fast this morning before his sedation and I can't believe that I couldn't get him to wake-up to nurse at 5am. I really was hoping not only to get some food in his belly but to make sure his veins were plump for the IV. He was absolutely not going to wake-up, I tried pretty hard too!
Of course traffic was worse than anticipated but we still made it on time to the appointment at Tacoma General. My mom and my sister were a big help and met the kids and I there to help keep Sophia busy and for support. The nurse was really nice and numbed up all his little wrists and ankles for possible pokes (two attempts in the wrist). I of course didn't want the IV in his head but that is where all the good veins are! Hoss was such a little trooper, he ended up having to get the IV in his head (which didn't get numbed first) and was put to sleep pretty quickly after that. It is really strange to see how fast that drug works and it is definitely a weird feeling to see your baby sedated. The scan was like 5 minutes but they had to sedate him because the Dr's need a really clear scan for surgery. He woke-up 35 minutes after they administered the drug, I gently stroked his cheek and and talked to him to wake him. He gave me a sweet smile and I couldn't have been more relieved to see that precious grin. He was a little groggy over the next 15 minutes but cooing, and hungry. I was really happy everything went just right!
Thank you to everyone who thought of us through prayer or other ways! It does make a difference! We will see the neurologist on Monday morning next week to follow up on his scans and get a surgery date. I will update then.
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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