Wednesday, December 16, 2009

We have a surgery date!

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!

Tuesday, December 15, 2009

Our visit with the Neurosurgeon and the plastic surgeon

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

New house, and the day our lives changed

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.

The day we closed on the house, we found a leak in the roof! It wasn't a problem since the seller said he would fix it. Also that night, Dean was sent out to sea for 9 days! That left me to pack, paint, watch over the roof and plumbing repairs and move as much as I could. The day after the roof was repaired we were hit with a huge Nor'easter. 3 days of heavy downpours and strong winds. The area was flooded and the bridges and tunnels were closed. Good news is that the roof held up and we didn't flood out here! Eventually Dean came home and that weekend was spent moving. We had lined up a U-haul truck so that we could move everything quickly. That fell though and we were stuck with using our truck and my uncles truck. We got most of it moved that day. Dean and spent the next few weekends moving some of the odds and ends. Finally we were all moved! We still had to spend the next weekend at the old house cleaning to get it ready for the next tenant. We left the rental house that afternoon (after 4 hours of cleaning) feeling like a weight had been lifted off our shoulders. Finally we could relax one weekend. NOPE! Wishful thinking! Me and my bright ideas decided that we would throw Brian a party for his 2nd birthday at our house! It was only 3 weeks away and we still had way to much unpacking left to do. Darn ambitious mind! We have a little less that a week before the party now. I'll show you all pictures next weekend! Moving on to another subject!

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.

They used this special light under his arm to get the veins to light up. It was a pretty cool tool! They finally called in the IV Specialist Team. She missed the first time and got it the second time. Poor Nathan cried and cried but was a happy little dude once they all left! He's a trooper.

After waiting a little while they took us off to the CT room. They would only let one of us go back with Nathan while they sedated him. They laid him down on the CT bed and turned on a projector on the ceiling for him to look at. It was pictures of stars and the moon. They gave him the meds and it put him in a zombie like state. They don't make him sleep just make him still. Once he was zoned out they made me leave. It was the longest walk of 10 feet ever. I sat in teh waiting room for litterally about 90 seconds before the doctor came to get me and tell me it was all over. 30 minutes of needle pricking for 90 seconds of stillness. When I got back to him, he was laying on his side still zoned out. His eyes were open but he wasn't following anything or reacting all all. He was really floppy and had no control. The nurse said he'll come around shortly and he can have some pedialyte to drink. She went over the papers with me and he started to snap out of it. He drank a whole bottle of pedialyte and explained to me that he would probably sleep for 4-6 hours that afternoon and the effects of the drug would be with him for 4-12 hours. We were discharged and were sent home to wait for 12 hours to 3 days for the results. Natha snapped out of his zombie state in just about 1 hour! He acted completely normal for the rest of the day. That gave me high hopes for any future recovery.
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.
Nathan, more specifically, has sagittal synostosis. His bones have fused down the middle of his skull creating the ridge that we have been feeling.
Here is a picture of a normal head:

And here is a picture of what Nathan's looks like:

So what do they do to fix this? Surgery. Plain and simple. I have found a great support board called Cranio Kids and it has tons of other families going through the exact same thing. They are great at answering any questions. Even the silly ones. We meet with a Neurosurgeon and a plastic surgeon tomorrow to set this all up and to ask my 71 million questions. I will know more tomorrow hopefully! Until then keep Nathan in your thoughts and prayers!

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!