Nathan's surgery is January 8, 2010! I'm so happy that the date has finally been set and that it will be before his birthday!
Wednesday, December 16, 2009
Tuesday, December 15, 2009
We went to see the surgeons that will be operating on Nathan last Tuesday. Dr. Dillustro talked to us about what craniosynostosis is and the treatment for it. He used some big words and then dumbed it down for us. LOL He showed us the CT scan pictures on his computer and it was very obvious that his sutures were infact closed up. He confirmed to us that they were already fused when he was born and it was NOT something that happened during labor. He referred to Nathan as "deformed". My initial thought after hearing that was "how rude, I don't know that I like this guy at all". Then he explained to us that they need to use that word because when an insurance company sees "plastic surgeon" on the bill they write it off as cosmetic and this is most definately NOT cosmetic.
Dr. Dillustro assured us that he has been doing this for over 25 years and has done thousands of these surgeries. He walked us through the procedure. (If you would like to know the nice version, click here. If you would like to know the more detailed version, click here.) The surgery is about 4-5 hours long and he will be heavily sedated. After the surgery is over he will be in the PICU (Pediatric Intensive Care Unit) for 1-2 days and then he will be moved to the regular care floor. Dr. Dillustro told us to expect significant swelling of the face for a few days and that minor swelling can last even a couple weeks. He said we will notice a difference in his head shape right away.
After meeting Dr. Dillustro, he introduced us to Dr. Magee. Dr. Magee is the plastic surgeon that will be taking care of Nathan. He is a experienced surgeon. He and his wife co-founded Operation Smile over 25 years ago. They operate on needy children in foreign countries. Mainly they fix cleft pallets and other craniofacial deformities. I feel confident in his work.
We are still waiting for a surgery date. On Tuesday we were told we should know in 2-3 days. Well now it has been 5 days. My husband has been very busy harassing them and has even called some of the secretaries himself to find out the doctor's surgery schedules. As of now we are waiting/hoping Dr. Magee will open another day for surgery. He only has two so far. One day in January and one day in March. I'd really like to get the January date since it is best if the surgery is done before Nathan's first birthday. All of this is out of our hands and we just pray we get the day that is best for Nathan.
Keep my little dude in your thoughts and prayers and I will continue to update as I find out more.
Monday, December 7, 2009
It has been quite a while since I last updated here.I believe the last update was in September. Since then, we found, bought and moved into our new house! We found a 3 bedroom 2 bath house that was perfect for our family! When we first saw the house it was naked. Litterally! It was in the middle of a complete renovation! There was no paint, no flooring, no cabinets and no windows! I'm going ot try a new way of sharing photos with you. Here are pictures of our naked house and pictures of it finished.
Nathan is growing like a weed. He is scooting along now and saying mamma and dadda. He is the happiest little boy ever! He had an appointment with his pediatrician for his routine 9 month appointment. He weighed in at 19 pounds and 27 inches long! She asked me if there was anything I was concerned about or had any questions. I asked her again about the ridge that he has down the middle of his skull still. At a previous appointment we had discussed this and the pediatrician decided we would "watch it" and that he would "grow out of it". She looked at his head, felt his ridge and asked me if his head looked funny to me. I told her it wasn't round and that his temple are sunken in. That's when everything changed. She decided she wanted to get a CT scan done on his head and see what she could see and the nurse would call me to let me know when the appointment at the hospital was. I left that appointment more confused and worried than ever. It was just me and the kids and I drove home as quickly as possible becasue I knew I had to do some research. The kids went off to nap time and I went off to my computer. After hours of reading I found out what should have been diagnosed 9 months ago.Our appointment was set for Tuesday, December 1st. While the week slowly passed, we celebrated Thanksgiving twice and had a blast but the whole time all I could think about was what might be and the CT scan ahead. The night before we had to fast Nathan since he was being sedated. I wasn't sure how well he would do with not eating. I woke him up at 3:45am for his last bottle until noon the next day. Finally Tuesday arrived. My aunt came over to watch Brian since children under 18 who aren't patients aren't allowed at the Children's Hospital becasue of H1N1. We got there at 9:30. We were taken back to the CT area so that they could sedate Nathan. The scan they were doing is a 3D reconstructive scan. It requires them to be completly still. They tried 3 times to get the IV in him and kept missing.
I called the pediatricians office that afternoon and was told they would call me first thing in the morning. Around 9:15 the phone rang! Of course it rang about 4 times before that and every time I nearly jumped out of my skin every time. But THE call came. The pediatrician called and said that Nathan had Craniosynostosis. It is just what I thought he had. What is that you might be wondering.
What is Craniosynostosis? In an infant, the skull is not a solid piece of bone, but several boney plates separated by fibrous sutures. These sutures allow room for growth as an infant develops, and will eventually fuse to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth. The result is an abnormally shaped head, or in severe cases, increased pressure on the brain. It is often sporadic with unknown cause, but can sometimes be linked a genetic syndrome. A physician’s examination as well as X-rays and/or a CT scan are required in order to properly diagnose craniosynostosis.
Oh and while all of this has happened, this weekend Dean has been sick, Brian got strep throat, and Nathan popped a 102 fever.Everyone is well now except Dean. I'll write more tomorrow. BYE!