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Rylan
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Craniosynostosis

Welcome!

Rylan in his bear coat pre-surgery.
Rylan in his bear coat

Well this has been quite a journey with our baby Rylan. Rylan was born on 02/25/2003 he weighed 8.0 lb. and was 21 inches long. As soon as we got Rylan home we noticed this ridge down the middle of his head. We did not think much of this and thought it was just due to the birth. By his two-week well baby checkup this ridge had not gone away and we asked the pediatrician about his head. The pediatrician then proceeded to tell us about this condition called craniosynostosis. My wife and I looked at each other and said cranio.... what? We had never heard of this before and were floored that something could actually be wrong with our perfect little baby. He said not to worry and he would check it again at his two-month appointment. So for two months we watched his head and that stubborn ridge was not going to fade. At Rylan's two-month appointment the pediatrician ordered a CT scan for Rylan and a consultation with a neurosurgeon. Well we still did not want to believe that surgery would actually be necessary. At this point I started scouring the Internet for all the information I could get my hands on. I came across http://www.cappskids.org, which is such a great support group where parents with kids that have cranio get together. The parents there helped answer so many questions and settle some fears we had. Well at our appointment with the neurosurgeon we learned that Rylan did in fact have sagittal synostosis and would need surgery. By this point we knew just what to ask the neurosurgeon and we felt comfortable with him and the decision to have the surgery. The surgery date was set for May 22 2003. It was a two-week wait for us. We tried to stick to our regular routine and not think about it too much. But of course it was always what seemed like a bad dream in the back of our mind.

May 21st came so slow from just wanting to get this behind us and so fast from never wanting the day to come. We packed our bags for the hospital that night and mad arrangement for our three year old Mason to stay with grandma. At midnight my wife fed Rylan for the last time before the surgery. We could not believe this was actually happening. This stuff happens to other peoples kids and we say oh that poor kid and then go on with our life forgetting all about that kid and family. Well now we are that family and that kid is our baby. At four a.m. we wake to get ready for our six o'clock check in time at Primary Childrens Hospital. We wake Rylan and try to give him his last chance at having some juice. He does not seem interested and is smiling at me. I try to engrave that image in my head not knowing if it will ever be the same again.

We arrive at the hospital and check in. Being at the hospital has made us more nervous and the reality of the whole situation starts to sink in. The nurse shows us the waiting room and tells us the surgeon and anesthesiologist will be by to talk to us and take Rylan. I sat there staring at all the other parents and kids wondering why they were there and if they could possibly be feeling the same anxiety I was. All the kids seemed happy and were playing not having any idea where they were or why. "Rylan" I heard someone say, my stomach turned and I looked up. There was Dr. Kestle the neurosurgeon followed by the anesthesia team. They seemed nice and talked to us a minute, I knew at any moment there would be silence and my wife was going to hand over our baby. I was not sure if I would start balling or if she would or both. We gave Rylan one last kiss and hug and then handed him over. Thank goodness he did not start crying, I think that is the only thing that kept Aubrey and myself from grabbing him back and running.

The wait was tough, we went down and had breakfast and then sat in the waiting room. We were so tired already and barely could stay awake. At about 9:30 am Dr. Kestle came in smiling and that was a great moment. "Everything went great and Rylan is doing fine", is that not the greatest group of words a doctor could say. He told us that I could go up to Rylan's room on the floor and Aubrey could go to the recovery room where he was. I went up and found his room and went in and waited for them to wheel him in. I was not sure I wanted to see him, I was scared to see what he was going to look like. I heard screeching wheels coming down the hall getting louder and louder. I knew it was Rylan being pushed toward the room. He came in with my wife right by his side. He was sound asleep and looked pretty normal. He did not have a bandage on his head and his incision was still kind of bloody. I was ready for this thanks to the research that I had done. He looked pretty good and we were relieved that it was over with. It was Thursday afternoon now and everything was going normal. Rylan slept pretty much all day and we stood next to him letting him know we were right there. Aubrey stayed that first night with Rylan and I had to drive about 30 minutes to get home.

The next morning I was eager to get back up to the hospital to see how Rylan did during the night. I was a little scared to see if he had swollen up and when I saw him it was just as I feared he was pretty swollen. The nurses were giving him morphine and tortal for the pain. He was still very sleepy and pretty much just laid in the crib. He cried out every once in a while and we rushed to his bed to let him know he was not alone. Aubrey and myself were just talking and wishing the clock would turn faster. We had no idea that it would turn out to be the worst day in either of our lives. At about 2:00 p.m. that Friday we were just sitting in the room by him when Rylans oxygen monitor started to beep. We did not think too much of it because it had beeped several times before when Rylan would move around. We got up and watched the monitor it was at 85 and kept dropping. We started to get a little nervous but expected it to go right back up like it had done several times before. Well it dropped to 80 then 75 then 70. This is when I went out in the hall and grabbed his nurse. She came right in now he was at 60 then 50. He started to look blue and his heart rate now started dropping. Aubrey and myself started to panic and watched the nurse start bagging him. She then hit the code button above Rylans blue face and in a matter of seconds 20 to 25 people were in our room working on Rylan. I could not believe it, it was as if they all came out of the walls they were there so fast. Aubrey and I were pushed to the corner of the room where we started sobbing and holding each other as we prayed for our baby to come back to us. In a minute or two, which seemed like forever we heard Rylan start crying. You dont know how sweet a baby's cry is until you are in a situation like that. The doctors continued to work on him, doing tests to see what might have caused this. We were trying to calm down which was very difficult; I was shaking so badly. The social workers came up to comfort us and they actually were very nice ladies and did help us calm down. The doctor said that he was not sure why Rylan had stopped breathing and the tests they did looked okay. The nurses continued to monitor him closely for about 30 more minutes. Well I went out to get some air and call my mother to tell her what had happened. I walked back into the infant unit doors where Rylans room was and headed for his room. I walked into the room and saw Rylan starting to go blue again. The nurse was already in there and she started bagging him again and hit the code button for a second time. I lost it at this point and a social worker grabbed me and took me out of the room. I can not remember crying so much in my life, I truly thought we were going to lose him. It was the worst moment in my life. I managed to tell the nurse to go find my wife because I had no idea where she was and I just wanted to be with her. I sat down in a chair and watched all the doctors and nurses racing in and out of Rylans room. I heard someone say, "He is okay". My wife came out to me and she said that he was okay. We held each other and cried thanking God that Rylan had come back to us again.

They immediately took Rylan down to the PICU where he would be watched closer. The social worker tried to calm me down because I had started having an anxiety attack. I looked up and saw my parents walk in. They could not have arrived at a better time. There are just times when you need your parents and this was definitely one of them. We headed down to the PICU where they had taken Rylan. The social worker pushed me down in a wheel chair because I was so shaky from the trauma and anxiety attack I had. We got down to the waiting room and we told my parents all that had happened. Aubrey and I then went in the PICU to see Rylan. We walked in and saw all these beds with children in them. Everything is wide open in the PICU and all that separates the beds are curtains. The doctors are stationed at a table in the middle of the room and nurses are stationed at each bed. It was somewhat of a relief to know that a nurse was there right next to Rylans bed watching him at every second. Rylan was sleeping and his eyes were pretty swollen. We stayed right by him asking the nurse and doctors questions. The doctors said that the second time Rylan stopped breathing he threw up quite a bit of mucus. They could not say why Rylan had done this for sure but suspected it was related to the morphine. Morphine is a depressant and slows the breathing and heart rate some when taken. I think it may have just been too much for Rylan and his body just forgot to keep breathing. They stopped giving him morphine and we were glad for that. Rylan did great while he was in the PICU. We took turns going in and visiting him with all of our families who had came up to the hospital to be with us. Rylan stayed in the PICU that night and Aubrey slept right by him on a pull out chair. The social worker was nice enough to get me one of the rooms they have for parents whose children are in the PICU. I was glad that I could stay there and not have to drive home. I think I would have just crashed on one of the couches anyway because I could not have gone home and left Rylan and Aubrey.

Saturday morning I woke up and went to see Rylan. The nurse said that he had a great night and that made me feel more at ease. Aubrey was still asleep on the chair next to Rylans bed. I just thought, she is such a great mom and I felt good knowing she was there with him during the night. Rylan was opening his eyes a little bit and it was great to see him starting to be alert a little more. His head and eyes were still very swollen if not the most swollen he had been. Dr. Kestle stopped by to see Rylan and said that the CT scan they took after his episodes looked good. He said that Rylan would probably get to go back up to the floor if he started eating a little bit. Aubrey woke up and decided to try breastfeeding Rylan to see if he would eat. I crossed my fingers and helped get him out of the crib. Thankfully he did breast feed and it was a sign that he was starting to feel better. At about noon they moved us back up to the infant care unit where we were before. I was a little nervous going back upstairs where the nurse wouldnt constantly be by his side and where this whole nightmare started. So we moved upstairs and by that night the swelling had gone down significantly. His eyes were open and he was actually smiling at us again. That was such a great sight to see. That night the nurse somehow got me a room to sleep in and I was so thankful for that. Aubrey slept in the room with Rylan again.

 I woke up and started to head over to the Infant Care Unit to see how Rylan did during the night. Right as the doors of the unit opened I saw Aubrey standing there holding Rylan. He was awake and looking around and Aubrey was smiling. At that point I knew everything was definitely behind us and we were going to make it. Rylan did not need to be on any monitors any more and he was getting by with just Tylenol and Motrin. The doctor came by and said we could probably go home later that day. Wow, was he serious? Were we ready to go home, I was not sure. But, I knew Aubrey could handle everything even though I was not sure I was ready too. So we packed up our things and thanked all the nurses and doctors for saving Rylan and being so good to us. We are so lucky to be living at this time in the world and have such a great hospital so close to us I thought as we headed out the doors of Primary Childrens Hospital for what will hopefully be the last time.

I was afraid at first to put our experience on the web for fear of scaring parents who are about to go through this experience with their child. I hope our experience does not change your feelings if your about to go through this with your child. I have never heard of this happening with any other kids and I believe it was an uncommon reaction to the morphine. I just want you to be more aware and educated in order to make the best decisions for your child. We are glad that we chose surgery for Rylan and would do it again if we had another kid with cranio. We are praying for all of the cranio children out there and please contact us if we can be of any help.


What's New?
Rylan is now five years old! I can't believe its been 5yrs since the surgery. He is doing and looking great. He starts school in the fall
and is doing awesome. He loves to play with his brothers and play
video games.

Please sign Rylan's guest book below and feel free to contact us with any questions or concerns.                                koolkiddz@hotmail.com

Rylan's Guestbook!


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