mpfeiffer
07-22-2008, 07:51 PM
We didn't discover Wolfy HAD sagittal synostosis until he was 4 months old (at a fever follow up appointment where the doctor declared the soft spot felt "weird"). The pediatrician recommended an x-ray, the radiologist said there was "no evidence of bony craniosynostosis" and we all breathed a sigh of relief. At Wolfy's 4 month well baby, I asked about it and was referred to Dr. Pincus at Shands Hospital (University of Florida) in Gainesville. Dr. Pincus immediately said that Wolfy had sagittal synostosis and he would like to perform an endoscopic stripectomy (SP). Since we had been living in denial, we had no intelligent questions to ask except for a referral for a 2nd opinion. We received 2 2nd opinions - both validated Dr. Pincus's diagnosis and surgery was scheduled for July 21st, 2008 (I know, it's only been a day but the stories here helped me so much that I wanted to post this while it was still "fresh").
The last 2nd opinion scared me to death. The doctor detailed what can happen if the sagittal sinus is perforated (bleed to death) and told us that it happened just a few weeks prior somewhere else. That was enough to scare us and we (more me than my husband) were nervouse wrecks up until surgery.
We attempted to donate blood for Wolfy in the event of a transfusion but NO ONE in our family was a match. We lucked out when I inadvertently discovered 2 of my friends were O- (universal) and they donated on my son's behalf. I'm still amazed at the generosity shown us overall.
Surgery was scheduled for 8 am on Monday and we got on the road at 4:30 am in case there was a traffic delay on the Hwy - there wasn't and we needed to burn time before the arrival time of 6 am. I took plenty of pictures documenting this which I'll attempt to insert here.
Basically, we arrived and followed a whole crew of people to the pre-op rooms where a zillion people paraded in and out asking the same questions over and over. Anaesthesia showed up at 7:30 with some stuff for Wolfy to drink which would make it easier to extract him. True - if I wasn't so stressed out I would have burst out laughing because he reminded me of a stoned person enjoying the ride. He was handed off happily to a woman who he couldn't stop smiling at and was taken to surgery (without a doubt, the HARDEST thing I've ever done in my life). We went to the waiting area and were called an hour before surgery was supposed to be complete. We met with the good doctor himself who told us that all was well and that a blood transfusion wasn't needed after all. Then we stared at the waiting room attendant until it was polite to follow-up and see if we could see him yet. We were admitted to recovery where my big little guy was on a bed just crying his eyes out - it was almost impossible to see him like that. He was given morphine and tylenol for the pain and we were finally able to hold him. After SEVEN hours (don't ask) in recovery, we were given a room.
I'm amazed at my little guy. Here it is a day and a half after Dr. Pincus cut out and discarded portions of his skull and we are at home with him in his bouncy seat - happy as a clam.
The only bits of advice that I have are to get the blood typing completed ASAP if you want to donate. And, instead of going through your GP's office, just go to a blood bank if you don't know your type, they'll usually type you within a day or so for a nominal fee. If you use your GP, it's usually not covered by insurance and is expensive. The other bit of advice is to ask the nurses to turn your child's head. When we woke up the morning after the surgery, my husband noticed that the back of Wolfy's skull still seemed very torpedo-like from a right view and his left eye was almost swollen shut. He'd been resting on his left side and we had them move him to rest on the right. We immediately noticed that (due to swelling/edema) the side that he'd been resting on was flat. By the time we left the hospital, his left eye was almost back to normal and the swelling had normalized all over his head.
I'm SO glad we made it to the other side. Thank you SO much to everyone on here, if I hadn't found this site prior to surgery I would never have survived.:eek:
The last 2nd opinion scared me to death. The doctor detailed what can happen if the sagittal sinus is perforated (bleed to death) and told us that it happened just a few weeks prior somewhere else. That was enough to scare us and we (more me than my husband) were nervouse wrecks up until surgery.
We attempted to donate blood for Wolfy in the event of a transfusion but NO ONE in our family was a match. We lucked out when I inadvertently discovered 2 of my friends were O- (universal) and they donated on my son's behalf. I'm still amazed at the generosity shown us overall.
Surgery was scheduled for 8 am on Monday and we got on the road at 4:30 am in case there was a traffic delay on the Hwy - there wasn't and we needed to burn time before the arrival time of 6 am. I took plenty of pictures documenting this which I'll attempt to insert here.
Basically, we arrived and followed a whole crew of people to the pre-op rooms where a zillion people paraded in and out asking the same questions over and over. Anaesthesia showed up at 7:30 with some stuff for Wolfy to drink which would make it easier to extract him. True - if I wasn't so stressed out I would have burst out laughing because he reminded me of a stoned person enjoying the ride. He was handed off happily to a woman who he couldn't stop smiling at and was taken to surgery (without a doubt, the HARDEST thing I've ever done in my life). We went to the waiting area and were called an hour before surgery was supposed to be complete. We met with the good doctor himself who told us that all was well and that a blood transfusion wasn't needed after all. Then we stared at the waiting room attendant until it was polite to follow-up and see if we could see him yet. We were admitted to recovery where my big little guy was on a bed just crying his eyes out - it was almost impossible to see him like that. He was given morphine and tylenol for the pain and we were finally able to hold him. After SEVEN hours (don't ask) in recovery, we were given a room.
I'm amazed at my little guy. Here it is a day and a half after Dr. Pincus cut out and discarded portions of his skull and we are at home with him in his bouncy seat - happy as a clam.
The only bits of advice that I have are to get the blood typing completed ASAP if you want to donate. And, instead of going through your GP's office, just go to a blood bank if you don't know your type, they'll usually type you within a day or so for a nominal fee. If you use your GP, it's usually not covered by insurance and is expensive. The other bit of advice is to ask the nurses to turn your child's head. When we woke up the morning after the surgery, my husband noticed that the back of Wolfy's skull still seemed very torpedo-like from a right view and his left eye was almost swollen shut. He'd been resting on his left side and we had them move him to rest on the right. We immediately noticed that (due to swelling/edema) the side that he'd been resting on was flat. By the time we left the hospital, his left eye was almost back to normal and the swelling had normalized all over his head.
I'm SO glad we made it to the other side. Thank you SO much to everyone on here, if I hadn't found this site prior to surgery I would never have survived.:eek: