We just arrived home from Shands. It was a successful visit, unlike the last one. It didn't start off that way though. We arrived in Gainesville around 7:30pm Sunday night and headed towards our motel (The Rush Lake Inn). After a little confusion on how to get there, we arrived at what looked like a pretty shady two story apartment complex with no windows on the units. We checked in, and made our way through a creepy parking lot to our room. As soon as we entered the "non-smoking" room, our nasal passages shut themselves down from the smell of the smoke. Between that, the prison look, and the scary dirty carpets & bathroom, we decided to leave and find a better place.
We headed for dinner (IHOP!!) and passed another hotel that was mentioned in our Shands materials. We called up and it turns out the cost of their room was only about $7 more than the Rush Lake. It was nice looking and had a conference center attached to it. We called them to check on room availability, and I asked how they compared to the Rush Lake Inn. "You're joking, right?" was the respsone. When we got there, I realized why she said it. It was very nice, very clean, offered Starbuck's coffee, and even had room service.
We woke up early today, and went straight to the hospital for Presley's MRI. We couldn't feed him because they were going to sedate him for the procedure. They decided to give it one try before sedating him, and although I could hear screaming accross the building, it was a success. They were able to get enough of an image to satisfy the neurologist that there was no brain issues to be concerned about. The MRI only showed the bone issues that we expected. We expected to be there for a few hours, but were out about 20 minutes after our appointment time.
From there we headed to the neurosurgeon's office to have Presley's physical exam. After a little confusion there, they sent us to eat breakfast and return for the visit an hour later. (A quick side note, Shands cafateria serves everything a la carte. You literally get charged per slice of bacon & per scoop of grits. ) We returned to the neurosurgeon's office an hour later and were brought back immediately. Within a few minutes the physician's assistant was in there to check out Presley. Everything was good, and she answered several questions we had come up with since our last visit.
Our last stop was the blood bank. As I mentioned in an earlier post, they had difficulty getting blood from Dana at our first visit. This time, everything went great. They had some concerns when looking at her veins (they aren't exactly buldging), but they called on one of their more skilled technicians who was able to handle it and not cause Dana any pain.
Thank you to my sister and brother-in-law, Debi & Eric, who took care of Powell and Amelia while we went down there. It's the kindness and prayers that our helping us get through this!!
1 week to go!!
Monday, January 29, 2007
Saturday, January 27, 2007
January 27, 2007 - A few changes
On the right side of the page I've added several links. These are links to the hospital where Presley will be treated, the physicians who are treating him, and a few links to sites about craniosynostosis.
I've also included a CT scan image which shows the skull of a child with craniosynostosis of the left coronal sutuer, like Presley has.
I've also included a CT scan image which shows the skull of a child with craniosynostosis of the left coronal sutuer, like Presley has.
Thursday, January 25, 2007
January 25, 2007
Monday, January 29, 2007 we'll be taking Presley to Shands for pre-op. He's scheduled to have an MRI done at 8am, and then will have a physical exam right afterwards. At 12pm, we are scheduled to go the bloodbank for Dana to donate. There is a 30% - 40% chance that Presley will need a transfusion during, or after the surgery. So, we'd rather him get our blood. We'll be heading to Gainesville on Sunday so we don't have to wake up so early Monday. Presley can't eat for a few hours before the MRI since they are going to have to sedate him. They don't want anything in his stomach. We would rather not drive 2 hours with a hungry, unhappy baby.
Our next post will include details on our successes for the day. Hopefully, we'll have better luck than our last issue.
Our next post will include details on our successes for the day. Hopefully, we'll have better luck than our last issue.
January 9, 2007
On January 9, 2007 we went to Shands for our scheduled pre-op. Our first appointment was with the plastic surgeon who would be reshaping Presley's head. As we were leaving the appointment, we received a call from the neurosurgeon's office letting us know that the surgery had been postponed due to the MLK holiday on January 15. Apparently, nobody involved in the scheduling realized it was a holiday and that the hospital would pretty much shut down. So, they rescheduled us for February 5, 2007.
We continued with the pre-op procedures for the day. During the appointment with the neurosurgeon, Dr. Pincus decided he wanted to have an MRI performed on Presley to ensure that his "lazy eye" was not related to the brain in any way. We went through the rest of our appointments for the day, and finally got to the MRI at about 5pm. We spent an hour waiting, and they took Presley back to perform the exam. Unfortunately, Presley didn't want to have anything to do with it. He screamed and moved around so much that they couldn't perform the exam. We had an appointment at 6:30pm at the blood bank, for Dana to donate for the possible transfusion, so we decided to give the MRI another try after the appointment.
We left the hospital and went to the blood bank for Dana to donate. At this point, we didn't have anything to eat during the day because we had spent so much time running around from appointment to appointment. As the technicians tried to draw Dana's blood, they had difficulty getting it to leave her veins. They suggested that it might be related to the lack of food, as well as narrow veins. Another dissapointing appointment.
Finally, we returned to the MRI department where we were told that the machines were being used by an emergency case, and a pre-scheduled case, that would both last 1.5 hours. They tried another lab in the hospital, and fortunately they were able to get us in. At about 8:15pm, they took Presley back to attempt another MRI. He wouldn't have anything to do with it. The outcome ... we were going to need to have Presley sedated and try another day!
We got home at around 11pm that night. Thank you so much to our friend Lynne who took care of Ashley, Powell and Amelia the entire time we were gone. What a relief to get home!
We continued with the pre-op procedures for the day. During the appointment with the neurosurgeon, Dr. Pincus decided he wanted to have an MRI performed on Presley to ensure that his "lazy eye" was not related to the brain in any way. We went through the rest of our appointments for the day, and finally got to the MRI at about 5pm. We spent an hour waiting, and they took Presley back to perform the exam. Unfortunately, Presley didn't want to have anything to do with it. He screamed and moved around so much that they couldn't perform the exam. We had an appointment at 6:30pm at the blood bank, for Dana to donate for the possible transfusion, so we decided to give the MRI another try after the appointment.
We left the hospital and went to the blood bank for Dana to donate. At this point, we didn't have anything to eat during the day because we had spent so much time running around from appointment to appointment. As the technicians tried to draw Dana's blood, they had difficulty getting it to leave her veins. They suggested that it might be related to the lack of food, as well as narrow veins. Another dissapointing appointment.
Finally, we returned to the MRI department where we were told that the machines were being used by an emergency case, and a pre-scheduled case, that would both last 1.5 hours. They tried another lab in the hospital, and fortunately they were able to get us in. At about 8:15pm, they took Presley back to attempt another MRI. He wouldn't have anything to do with it. The outcome ... we were going to need to have Presley sedated and try another day!
We got home at around 11pm that night. Thank you so much to our friend Lynne who took care of Ashley, Powell and Amelia the entire time we were gone. What a relief to get home!
Historical Info to Start the Blog.
Presley was born on September 3, 2006. Immediately, we noticed something different about his right eye. It appeared to be swollen, or not open as much as the left side. We asked the doctors about it, and they all told us that it was probably due to the birthing process.
At about 6 weeks, we did some research and his appearance seemed to match many children with craniosynostosis. After a visit with Dana's midwife, she suggested we visit the pediatrician to have another look. If the facial issues were caused by the birthing process, they would have resolved themselves by 6 weeks. So, we got in to see the physician the next day, and he sent us for a CT scan. As we had thought, he did in fact have a premature closing of the left coronal suture. The sutures are the flexible connections which keep the pieces of the skull together, while them to move around enough to help the birthing process, as well as allowing expansion of the skull for the growth of the brain.
Once diagnosed, the pediatrician referred us to Shands Hospital at University of Florida in Gainesville. We were extremely fortunate to get into Shands within a day of the referral. We met with a neurosurgeon who was very knowledgeable on the condition and had performed many surguries to repair the skull.
There are two methods to the repair. The first is a traditional procedure in which an incision is made across the head from ear to ear. The neurogsurgeon cuts the fused bone and then removes the front skull bones, as well as the bones that make up the structure above the eyes (think of this as the eyebrow bones). The procedure is invasive, and the chance of a blood transfusion is relatively high. As the child grows older, the costmetics are evaluated to determine if a second surgery is required. The chances of this are relatively low.
The second method is an endoscopic procedure. A small incision is made between the ear and the "soft spot" on the affected side of the head. The neurosurgeon cuts the bone as far up to the "soft spot" as possible, and as far down towards the ear as possible. The procedure is less invasive, and the chance of a blood transfusion is significantly lower. The child is then required to wear a corrective helmet, for up to a year, to help shape the head. Should the helmet not acheive satisfactory results, a second surgery might be possible. The possibilities of multiple surgeries is greater in this method.
After some diliberation, we decided to go with the tradional surgery. While more invasive, and increased possibility of a transfusion, we felt that the increased possibility of a second surgery, as well as the necessity to wear a helmet, overshadowed the benefits of a quicker, less invasive surgery.
Late in October, we scheduled the surgery for January 15, 2007. We anxiously waited for the surgery date.
At about 6 weeks, we did some research and his appearance seemed to match many children with craniosynostosis. After a visit with Dana's midwife, she suggested we visit the pediatrician to have another look. If the facial issues were caused by the birthing process, they would have resolved themselves by 6 weeks. So, we got in to see the physician the next day, and he sent us for a CT scan. As we had thought, he did in fact have a premature closing of the left coronal suture. The sutures are the flexible connections which keep the pieces of the skull together, while them to move around enough to help the birthing process, as well as allowing expansion of the skull for the growth of the brain.
Once diagnosed, the pediatrician referred us to Shands Hospital at University of Florida in Gainesville. We were extremely fortunate to get into Shands within a day of the referral. We met with a neurosurgeon who was very knowledgeable on the condition and had performed many surguries to repair the skull.
There are two methods to the repair. The first is a traditional procedure in which an incision is made across the head from ear to ear. The neurogsurgeon cuts the fused bone and then removes the front skull bones, as well as the bones that make up the structure above the eyes (think of this as the eyebrow bones). The procedure is invasive, and the chance of a blood transfusion is relatively high. As the child grows older, the costmetics are evaluated to determine if a second surgery is required. The chances of this are relatively low.
The second method is an endoscopic procedure. A small incision is made between the ear and the "soft spot" on the affected side of the head. The neurosurgeon cuts the bone as far up to the "soft spot" as possible, and as far down towards the ear as possible. The procedure is less invasive, and the chance of a blood transfusion is significantly lower. The child is then required to wear a corrective helmet, for up to a year, to help shape the head. Should the helmet not acheive satisfactory results, a second surgery might be possible. The possibilities of multiple surgeries is greater in this method.
After some diliberation, we decided to go with the tradional surgery. While more invasive, and increased possibility of a transfusion, we felt that the increased possibility of a second surgery, as well as the necessity to wear a helmet, overshadowed the benefits of a quicker, less invasive surgery.
Late in October, we scheduled the surgery for January 15, 2007. We anxiously waited for the surgery date.
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