xl1200c
11-02-2007, 11:12 AM
http://i212.photobucket.com/albums/cc102/xl1200cate72/helmet.jpg<o:p></o:p>
<o:p></o:p>
We welcomed David to our family in March of 2007.<o:p></o:p>
<o:p></o:p>
When David was 3 months old, we had made a simple doctor’s appointment thinking that David had reflux. While there, the doctor expressed concern about a slight ridge in David’s forehead. He briefly explained craniosynostosis to me. I just kept repeating to myself “this is ridiculous”, it seemed surreal. I’m thinking: “what are they going to do, crack his head open? Come on, that’s crazy…” and that its just one of those oddball tests the doctors make you have to get insurance money and protect themselves from liability… <o:p></o:p>
<o:p></o:p>
We were sent for x-rays (inconclusive) and then CT scans a month later when David was 4 months old. I began reviewing David’s old photos and taking pictures of all sides of David’s head every 2 weeks or so.<o:p></o:p>
<o:p></o:p>
After waiting a month for the CT, the results came back normal. While this was a great relief, it did not feel right to us because David’s head was changing, and not for the better. What was originally a ridge down the center of his forehead was evolving into a “pinched” look, especially when viewed from top down. (see photos below) The pediatricians assured us all was fine. We asked to see a neurosurgeon anyway, a wait of another month. In the meantime, we had requested our CT scans from the hospital, and were very concerned at how they looked:<o:p></o:p>
<o:p></o:p>
<center>http://i212.photobucket.com/albums/cc102/xl1200cate72/ct-front-4mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/ct-top-4mos.jpg</center><o:p></o:p>
<o:p></o:p>
Upon seeing David, the actual CT scans, and our photos, the neurosurgeon advised us that a mistake had been made, and our son indeed had metopic craniosynostosis. Although devastating to hear, in my gut it did feel like the truth and at least now we could move toward a solution. This particular doctor wanted to do surgery immediately and gave us lots of info that we now believe to be false. We immediately requested a consultation with the craniofacial team at Children’s <st1:place w:st="on"><st1:placetype w:st="on">Hospital</st1:placetype> of <st1:placename w:st="on">Boston</st1:placename></st1:place>. <o:p></o:p>
<o:p></o:p>
During the next few months we have met several times with the team in <st1:place w:st="on"><st1:city w:st="on">Boston</st1:city></st1:place>. All kinds of info was presented to us by the craniofacial surgeon, neurosurgeon, and ophthalmologist. This is just what our doctor told us regarding our son, it is not what every doctor would necessarily agree on:<o:p></o:p>
<o:p></o:p>
They rated David at a 6-7 on a scale of 1-10. His CT showed no signs of ICP or eye problems: no scalloping on inside of skull, no sign of erosion, no bulging of fontanels, plenty of fluid around brain, although not much fluid is seen near the pinched areas and the lobes of his brain were flattened under the pinch. They advised that it is very unlikely that ICP would be a problem at this age unless multiple sutures were closed. <o:p></o:p>
In a case with triangulation he advises that scallops/ICP eventually may appear and durra will become thin and that the pressure could have no effects, terrible effects, or subtle almost unrecognizable symptoms – he feels there is no conclusive info on the brain’s ability to adapt to pressure, but round brains are not meant to be in triangular spaces. The narrower it becomes in front, more chance of developing symptoms. The surgery drops pressure to normal and creates room for proper growth of brain. If it were their child, they would proceed with surgery.<o:p></o:p>
Risks/complications include: anesthesia, blood loss, infection. If we were to do the surgery, they would want to wait until 9-10 months so bone is stronger and less chance of relapse. Also kidneys and liver are better able to handle anesthesia at this age. <o:p></o:p>
If we decline surgery, ICP/eyes could become problematic as the bones become firmer. We would have to closely monitor head circumference, pressure and eyes for next 5 years. They would want to make sure that the “size of the box keeps up with size of contents”. <o:p></o:p>
<o:p></o:p>
It bothered me terribly that it seemed like they were giving us a choice. I don’t feel that I am the right person to choose this, I don’t feel I have the education or medical experience to make a good choice. But in the end, it is my husband and I that have this deep love for our son, and that entitles us to the responsibility to choose. Based on the experience and knowledge of our team, we choose the surgery. It was scheduled for December 12th.
<o:p></o:p>
Remember I said I took photos every few weeks? Here is our history in pictures so far: <o:p></o:p>
<center><o:p></o:p>
Months two, three, and four, plus a top view at age 4 mos:<o:p></o:p>
<o:p></o:p>
http://i212.photobucket.com/albums/cc102/xl1200cate72/front-2mos-1.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-3-b-mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-4mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/top-3mos.jpg<o:p></o:p>
<o:p></o:p>
Months five, six, and seven, plus a top view at age 7 mos.:<o:p></o:p>
<o:p></o:p>
http://i212.photobucket.com/albums/cc102/xl1200cate72/front-5mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-6mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-7amos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/top-7mos.jpg</center><o:p></o:p>
<o:p></o:p>
The days leading up to the surgery were difficult. Sometimes I questioned if his head was really that bad. I tried to tell myself that I was not in the proper frame of mind to make major decisions, and that I should stick with the decision that I made when I was most calm and to go ahead. I was not terribly emotional, but the stress in my body was making me physically ill. I just kept telling myself to put one foot in front of the other and keep going; that these days will pass just like any other day.<o:p></o:p>
<o:p></o:p>
Dec. 12th, Wednesday: We arrived at the hospital and did the usual stuff; vitals, consents, meet and shake hands with the doctors who would be our son’s companions through this. I got to carry him to operating room. It was difficult to do, he fought a bit, and I did my best to comfort him before the medicine took over. This was 9am.<o:p></o:p>
<o:p></o:p>
We got updated on David’s condition every hour and a half. At 10:30 the update was that he was doing fine, and that the incision had been made. I could not even get my head around this idea, we had read so many stories, but this time is was us. It made no sense to me that this was real.<o:p></o:p>
<o:p></o:p>
At noon, the neurosurgeon came to visit us. He told us his part of the surgery was done and that the craniofacial surgeons would need another two hours or so. He told us that David had a transfusion of 1-1/2 units, and that they intended to give him transaximic acid (estimated to reduce blood loss by 40%).<o:p></o:p>
<o:p></o:p>
At 2pm, the craniofacial surgeon came to report that he was done. He told us that everything went as planned. He said that we made the correct decision to go with surgery as the brain was pressed very firmly against the skull in the Metopic area. Not thin or scalloped yet, but far from ideal. I started asking him all kinds of questions that didn’t even make sense or seem relevant, I was just so nervous and scared. Finally the doctor leaned over to me and said “he’s ok”, and I just started shaking and crying with the relief of it all. He told us that the anesthesiologists were finishing up, that he would go back and help, and that we could see David in about an hour.<o:p></o:p>
<o:p></o:p>
While David was being moved to his room, we met with the lead anesthesiologist. She told us that he was sleeping peacefully. She let us know that over the next few days he would be monitored closely for: (1) neurological response, meaning he can move his eyes, hands, and feet if he wants to, (2) blood levels to see if additional transfusions are necessary, (3) fluid levels – to be sure all his extra fluids are exiting as pee and not collecting in his extremities or lungs.<o:p></o:p>
<o:p></o:p>
At 3:30 we saw him, it was very sad to see his little self on a big hospital bed, but he looked so peaceful. They had covered him with his blankets from home, and his head was wrapped, so our first sight of him did not include all of the offensive tubes and cables and things. It was just our sleeping boy. He looked incredible. His forehead was so smooth and flat. <o:p></o:p>
<o:p></o:p>
I was a bit caught off guard that he was making a scratching sound in his throat as he breathed. The nurses assured me that it is a normal after-affect from having been intubated. Under his blankets he had (1) an arterial line in his right wrist to measure his blood pressure and to be used as a source of blood for tests, (2) an IV in each foot - one for fluids the other as a backup so they wouldn’t have to struggle to place another iv if the first one failed, they say baby veins commonly cannot hold an iv for long, (3) oxygen and humidified air blowing by near his head, (4) a drain coming from his bandaged head, and (5) a catheter. He stirred once in awhile and had a pitiful little moan/cry. The nurse only needed to hear that once before she got him some pain meds (5pm), and then he rested more peacefully again.<o:p></o:p>
<o:p></o:p>
At 9pm he was alert and interactive for a few minutes. It was excellent and helped to assure us he was ok. The staff didn’t really want us to move him too much just yet, but if he got really fussy they encouraged us to get in bed with him and cuddle him.<o:p></o:p>
<o:p></o:p>
The night was very long, lots of activity in his room from people monitoring him and machines clicking off the seconds with all their noise. It was near impossible to sleep. <o:p></o:p>
<o:p></o:p>
Thursday: At 4:30 am, he was strong enough to wake up and fight before his meds were due. He tried to rip all the stuff off himself. His angry tears could escape from his eyes that were swollen shut, it was breaking my heart. I tried to console myself by saying that it is a sign that he is getting his strength back, and that is progress. Before having his meds this time, we gave him pedialite. It soothed him to be able to suck on something, plus he must have been parched, so I’m sure it felt good to drink even though he only had about a half ounce. He did not throw up, we were very grateful. (They had been delaying giving him a drink so that his stomach would have time to recover from the anesthesia) <o:p></o:p>
<o:p></o:p>
Once they saw he could hold liquids, he was switched to codeine with Tylenol for pain. We moved off the ICU at around noon, it was so much quieter. About this time he also got to have formula, and he did well with it. His swelling got worse through the day and peaked in the night. David seemed to be feeling better. A nurse explained that even if the swelling gets worse, his demeanor will get better due to reduced pain and that he is becoming accustomed to having his eyes closed.<o:p></o:p>
<o:p></o:p>
We had made a CD at home. It contained his baby music, plus the sounds of his big sister (and parents) reading him stories. We had played it a lot at home in the months leading up to the surgery. It was very soothing for him to hear when he would start to be fussy.<o:p></o:p>
<o:p></o:p>
Friday: The swelling is starting to go down. A nurse visited and asked if we were shifting his head position to avoid positional plagio, this was a good point. They told us to keep him upright as much as possible to help further reduce the swelling. <o:p></o:p>
<o:p></o:p>
Slowly, throughout the day things were being removed from him; his drain, an arterial line, catheter, and an iv. He had been pulling quite a bit at the electrode things on his chest. The nurse moved them to his back so they still work, but he can’t reach them, and they don’t get tangled in the other stuff as easily. His head was getting lighter, so now he could move around in the bed and lift up his head again.<o:p></o:p>
<o:p></o:p>
Late in the day we had him in the stroller with rolled blankets on his left and right to support his head. He loved this, and it seemed to keep him in a position that caused the least amount of discomfort.<o:p></o:p>
<o:p></o:p>
We were starting to think about our release from the hospital. The craniofacial team visited they said his release depends on: being able to pee, eyes opening, and guarding the areas where the drain was removed to be sure fluid doesn’t pool and change his neurological abilities. Our concerns at home would be infection of the scar and having the infection easily move into the freshly cut bones. <o:p></o:p>
<o:p></o:p>
Saturday: They removed the bandages from his head, both eyes opened at the same time when this happened. He was too tired to be excited because he had been up for several hours already. I couldn’t wait to see top view, so while dr was still working I climbed up on a chair to look down. It was like it wasn’t real, until I touched the spots that used to be flat, then it was real & I cried happy tears.<o:p></o:p>
<o:p></o:p>
When he woke up from nap, he was able to open his eyes even better. He was excited about it. It was weird to see moving his head to watch us walk across the room, he had been so still for so long. When I got to him he reached for me, put his hands on my cheeks and pulled me to him. He let out a HUGE smile. It was the best. We left the hospital at about noon with instructions to use just Tylenol for pain.<o:p></o:p>
<o:p></o:p>
The next days: He slept very well, he has a bit of rebound swelling and some brownish black & blue areas. They had told us to expect this as the steroids wore off. It is getting easier to get him to smile or giggle. He eats and drinks well. He is thrilled to see his sister. Before we had gone to the hospital, we had learned to sit and crawl. This was tricky when we got home because his head was so much heavier from the swelling and he had to re-learn how to balance it. I wanted to wrap him in pillows.<o:p></o:p>
<o:p></o:p>
Photos- immediately after surgery, 48 hours after surgery, 3 days later, & before/ afters:<o:p></o:p>
<center><o:p></o:p>
http://i212.photobucket.com/albums/cc102/xl1200cate72/2007Dec12-PO-1hr-2.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/2007Dec14-PO-48hrs-3.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/2007Dec15-13.jpg<o:p></o:p>
<o:p></o:p>
http://i212.photobucket.com/albums/cc102/xl1200cate72/combo-2.jpg </center><o:p></o:p>
<o:p></o:p>
I have no idea how to describe the feelings we have. We are immensely relieved, in awe, and a bit of shock that this is behind us after worrying for so long. David now has proper room for his brain to grow in a normal fashion, and he looks incredible. I wish there were better words to share how this all feels. I guess some things are just too good for words to be able to describe.
Update 9/14/08: Our post-op has been filled with a bit of worry, most of which seems like it was unnecessary. To see more on our post-op, click here: http://www.craniokids.org/support/showthread.php?t=6316
<o:p></o:p>
<o:p></o:p>
<o:p></o:p>
We welcomed David to our family in March of 2007.<o:p></o:p>
<o:p></o:p>
When David was 3 months old, we had made a simple doctor’s appointment thinking that David had reflux. While there, the doctor expressed concern about a slight ridge in David’s forehead. He briefly explained craniosynostosis to me. I just kept repeating to myself “this is ridiculous”, it seemed surreal. I’m thinking: “what are they going to do, crack his head open? Come on, that’s crazy…” and that its just one of those oddball tests the doctors make you have to get insurance money and protect themselves from liability… <o:p></o:p>
<o:p></o:p>
We were sent for x-rays (inconclusive) and then CT scans a month later when David was 4 months old. I began reviewing David’s old photos and taking pictures of all sides of David’s head every 2 weeks or so.<o:p></o:p>
<o:p></o:p>
After waiting a month for the CT, the results came back normal. While this was a great relief, it did not feel right to us because David’s head was changing, and not for the better. What was originally a ridge down the center of his forehead was evolving into a “pinched” look, especially when viewed from top down. (see photos below) The pediatricians assured us all was fine. We asked to see a neurosurgeon anyway, a wait of another month. In the meantime, we had requested our CT scans from the hospital, and were very concerned at how they looked:<o:p></o:p>
<o:p></o:p>
<center>http://i212.photobucket.com/albums/cc102/xl1200cate72/ct-front-4mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/ct-top-4mos.jpg</center><o:p></o:p>
<o:p></o:p>
Upon seeing David, the actual CT scans, and our photos, the neurosurgeon advised us that a mistake had been made, and our son indeed had metopic craniosynostosis. Although devastating to hear, in my gut it did feel like the truth and at least now we could move toward a solution. This particular doctor wanted to do surgery immediately and gave us lots of info that we now believe to be false. We immediately requested a consultation with the craniofacial team at Children’s <st1:place w:st="on"><st1:placetype w:st="on">Hospital</st1:placetype> of <st1:placename w:st="on">Boston</st1:placename></st1:place>. <o:p></o:p>
<o:p></o:p>
During the next few months we have met several times with the team in <st1:place w:st="on"><st1:city w:st="on">Boston</st1:city></st1:place>. All kinds of info was presented to us by the craniofacial surgeon, neurosurgeon, and ophthalmologist. This is just what our doctor told us regarding our son, it is not what every doctor would necessarily agree on:<o:p></o:p>
<o:p></o:p>
They rated David at a 6-7 on a scale of 1-10. His CT showed no signs of ICP or eye problems: no scalloping on inside of skull, no sign of erosion, no bulging of fontanels, plenty of fluid around brain, although not much fluid is seen near the pinched areas and the lobes of his brain were flattened under the pinch. They advised that it is very unlikely that ICP would be a problem at this age unless multiple sutures were closed. <o:p></o:p>
In a case with triangulation he advises that scallops/ICP eventually may appear and durra will become thin and that the pressure could have no effects, terrible effects, or subtle almost unrecognizable symptoms – he feels there is no conclusive info on the brain’s ability to adapt to pressure, but round brains are not meant to be in triangular spaces. The narrower it becomes in front, more chance of developing symptoms. The surgery drops pressure to normal and creates room for proper growth of brain. If it were their child, they would proceed with surgery.<o:p></o:p>
Risks/complications include: anesthesia, blood loss, infection. If we were to do the surgery, they would want to wait until 9-10 months so bone is stronger and less chance of relapse. Also kidneys and liver are better able to handle anesthesia at this age. <o:p></o:p>
If we decline surgery, ICP/eyes could become problematic as the bones become firmer. We would have to closely monitor head circumference, pressure and eyes for next 5 years. They would want to make sure that the “size of the box keeps up with size of contents”. <o:p></o:p>
<o:p></o:p>
It bothered me terribly that it seemed like they were giving us a choice. I don’t feel that I am the right person to choose this, I don’t feel I have the education or medical experience to make a good choice. But in the end, it is my husband and I that have this deep love for our son, and that entitles us to the responsibility to choose. Based on the experience and knowledge of our team, we choose the surgery. It was scheduled for December 12th.
<o:p></o:p>
Remember I said I took photos every few weeks? Here is our history in pictures so far: <o:p></o:p>
<center><o:p></o:p>
Months two, three, and four, plus a top view at age 4 mos:<o:p></o:p>
<o:p></o:p>
http://i212.photobucket.com/albums/cc102/xl1200cate72/front-2mos-1.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-3-b-mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-4mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/top-3mos.jpg<o:p></o:p>
<o:p></o:p>
Months five, six, and seven, plus a top view at age 7 mos.:<o:p></o:p>
<o:p></o:p>
http://i212.photobucket.com/albums/cc102/xl1200cate72/front-5mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-6mos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/front-7amos.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/top-7mos.jpg</center><o:p></o:p>
<o:p></o:p>
The days leading up to the surgery were difficult. Sometimes I questioned if his head was really that bad. I tried to tell myself that I was not in the proper frame of mind to make major decisions, and that I should stick with the decision that I made when I was most calm and to go ahead. I was not terribly emotional, but the stress in my body was making me physically ill. I just kept telling myself to put one foot in front of the other and keep going; that these days will pass just like any other day.<o:p></o:p>
<o:p></o:p>
Dec. 12th, Wednesday: We arrived at the hospital and did the usual stuff; vitals, consents, meet and shake hands with the doctors who would be our son’s companions through this. I got to carry him to operating room. It was difficult to do, he fought a bit, and I did my best to comfort him before the medicine took over. This was 9am.<o:p></o:p>
<o:p></o:p>
We got updated on David’s condition every hour and a half. At 10:30 the update was that he was doing fine, and that the incision had been made. I could not even get my head around this idea, we had read so many stories, but this time is was us. It made no sense to me that this was real.<o:p></o:p>
<o:p></o:p>
At noon, the neurosurgeon came to visit us. He told us his part of the surgery was done and that the craniofacial surgeons would need another two hours or so. He told us that David had a transfusion of 1-1/2 units, and that they intended to give him transaximic acid (estimated to reduce blood loss by 40%).<o:p></o:p>
<o:p></o:p>
At 2pm, the craniofacial surgeon came to report that he was done. He told us that everything went as planned. He said that we made the correct decision to go with surgery as the brain was pressed very firmly against the skull in the Metopic area. Not thin or scalloped yet, but far from ideal. I started asking him all kinds of questions that didn’t even make sense or seem relevant, I was just so nervous and scared. Finally the doctor leaned over to me and said “he’s ok”, and I just started shaking and crying with the relief of it all. He told us that the anesthesiologists were finishing up, that he would go back and help, and that we could see David in about an hour.<o:p></o:p>
<o:p></o:p>
While David was being moved to his room, we met with the lead anesthesiologist. She told us that he was sleeping peacefully. She let us know that over the next few days he would be monitored closely for: (1) neurological response, meaning he can move his eyes, hands, and feet if he wants to, (2) blood levels to see if additional transfusions are necessary, (3) fluid levels – to be sure all his extra fluids are exiting as pee and not collecting in his extremities or lungs.<o:p></o:p>
<o:p></o:p>
At 3:30 we saw him, it was very sad to see his little self on a big hospital bed, but he looked so peaceful. They had covered him with his blankets from home, and his head was wrapped, so our first sight of him did not include all of the offensive tubes and cables and things. It was just our sleeping boy. He looked incredible. His forehead was so smooth and flat. <o:p></o:p>
<o:p></o:p>
I was a bit caught off guard that he was making a scratching sound in his throat as he breathed. The nurses assured me that it is a normal after-affect from having been intubated. Under his blankets he had (1) an arterial line in his right wrist to measure his blood pressure and to be used as a source of blood for tests, (2) an IV in each foot - one for fluids the other as a backup so they wouldn’t have to struggle to place another iv if the first one failed, they say baby veins commonly cannot hold an iv for long, (3) oxygen and humidified air blowing by near his head, (4) a drain coming from his bandaged head, and (5) a catheter. He stirred once in awhile and had a pitiful little moan/cry. The nurse only needed to hear that once before she got him some pain meds (5pm), and then he rested more peacefully again.<o:p></o:p>
<o:p></o:p>
At 9pm he was alert and interactive for a few minutes. It was excellent and helped to assure us he was ok. The staff didn’t really want us to move him too much just yet, but if he got really fussy they encouraged us to get in bed with him and cuddle him.<o:p></o:p>
<o:p></o:p>
The night was very long, lots of activity in his room from people monitoring him and machines clicking off the seconds with all their noise. It was near impossible to sleep. <o:p></o:p>
<o:p></o:p>
Thursday: At 4:30 am, he was strong enough to wake up and fight before his meds were due. He tried to rip all the stuff off himself. His angry tears could escape from his eyes that were swollen shut, it was breaking my heart. I tried to console myself by saying that it is a sign that he is getting his strength back, and that is progress. Before having his meds this time, we gave him pedialite. It soothed him to be able to suck on something, plus he must have been parched, so I’m sure it felt good to drink even though he only had about a half ounce. He did not throw up, we were very grateful. (They had been delaying giving him a drink so that his stomach would have time to recover from the anesthesia) <o:p></o:p>
<o:p></o:p>
Once they saw he could hold liquids, he was switched to codeine with Tylenol for pain. We moved off the ICU at around noon, it was so much quieter. About this time he also got to have formula, and he did well with it. His swelling got worse through the day and peaked in the night. David seemed to be feeling better. A nurse explained that even if the swelling gets worse, his demeanor will get better due to reduced pain and that he is becoming accustomed to having his eyes closed.<o:p></o:p>
<o:p></o:p>
We had made a CD at home. It contained his baby music, plus the sounds of his big sister (and parents) reading him stories. We had played it a lot at home in the months leading up to the surgery. It was very soothing for him to hear when he would start to be fussy.<o:p></o:p>
<o:p></o:p>
Friday: The swelling is starting to go down. A nurse visited and asked if we were shifting his head position to avoid positional plagio, this was a good point. They told us to keep him upright as much as possible to help further reduce the swelling. <o:p></o:p>
<o:p></o:p>
Slowly, throughout the day things were being removed from him; his drain, an arterial line, catheter, and an iv. He had been pulling quite a bit at the electrode things on his chest. The nurse moved them to his back so they still work, but he can’t reach them, and they don’t get tangled in the other stuff as easily. His head was getting lighter, so now he could move around in the bed and lift up his head again.<o:p></o:p>
<o:p></o:p>
Late in the day we had him in the stroller with rolled blankets on his left and right to support his head. He loved this, and it seemed to keep him in a position that caused the least amount of discomfort.<o:p></o:p>
<o:p></o:p>
We were starting to think about our release from the hospital. The craniofacial team visited they said his release depends on: being able to pee, eyes opening, and guarding the areas where the drain was removed to be sure fluid doesn’t pool and change his neurological abilities. Our concerns at home would be infection of the scar and having the infection easily move into the freshly cut bones. <o:p></o:p>
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Saturday: They removed the bandages from his head, both eyes opened at the same time when this happened. He was too tired to be excited because he had been up for several hours already. I couldn’t wait to see top view, so while dr was still working I climbed up on a chair to look down. It was like it wasn’t real, until I touched the spots that used to be flat, then it was real & I cried happy tears.<o:p></o:p>
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When he woke up from nap, he was able to open his eyes even better. He was excited about it. It was weird to see moving his head to watch us walk across the room, he had been so still for so long. When I got to him he reached for me, put his hands on my cheeks and pulled me to him. He let out a HUGE smile. It was the best. We left the hospital at about noon with instructions to use just Tylenol for pain.<o:p></o:p>
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The next days: He slept very well, he has a bit of rebound swelling and some brownish black & blue areas. They had told us to expect this as the steroids wore off. It is getting easier to get him to smile or giggle. He eats and drinks well. He is thrilled to see his sister. Before we had gone to the hospital, we had learned to sit and crawl. This was tricky when we got home because his head was so much heavier from the swelling and he had to re-learn how to balance it. I wanted to wrap him in pillows.<o:p></o:p>
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Photos- immediately after surgery, 48 hours after surgery, 3 days later, & before/ afters:<o:p></o:p>
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http://i212.photobucket.com/albums/cc102/xl1200cate72/2007Dec12-PO-1hr-2.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/2007Dec14-PO-48hrs-3.jpg http://i212.photobucket.com/albums/cc102/xl1200cate72/2007Dec15-13.jpg<o:p></o:p>
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http://i212.photobucket.com/albums/cc102/xl1200cate72/combo-2.jpg </center><o:p></o:p>
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I have no idea how to describe the feelings we have. We are immensely relieved, in awe, and a bit of shock that this is behind us after worrying for so long. David now has proper room for his brain to grow in a normal fashion, and he looks incredible. I wish there were better words to share how this all feels. I guess some things are just too good for words to be able to describe.
Update 9/14/08: Our post-op has been filled with a bit of worry, most of which seems like it was unnecessary. To see more on our post-op, click here: http://www.craniokids.org/support/showthread.php?t=6316
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