Alexzander’s story starts on April 18th 2006, that is the day that our son came into this world. My husband and I were over the moon being first time parents. Over the next few months we loved watching him grow. He was amazing. It was shortly before his three month check up that we started to noticing that the shape of his head seemed to be longer then it should be. The time rolled around for his check up and we had to take him to a doctor he had not been to before because our usually doctor was out of town for a couple weeks.
Everything seemed to be going well until she started feeling for his soft spot, I could see the look of concern on her face, she tried not to say anything to us about it but she asked us to take him over for an x-ray, I of course voiced my concerns about giving my infant an x-ray without knowing why. All she would tell us was that is seemed like his soft spot was smaller then it should be. We took him over to x-ray, I was trying to hold it together because I did not want to upset him but I was scared. The x-ray staff told us they would call us after the doctor looked at them.
When I got home the first thing I did was get onto the computer and started “Googling” all the reasons why they would be concerned about his soft spot and I soon found information on craniosynotosis which is the union of separate cranial bones into a single bone structure. My heart sank because I just knew that this was what he had.
The doctor called us the next morning and asked us to come in. We sat down with her and she confirmed my fears, he had craniosynotsis, we would be referred to a specialist to discuss our next strep in his treatment, which I knew from my reading the previous day would be surgery.
The first thing we had to do was get him a cat scan. I was very worried about exposing him to that much radiation, it was less then a week between the cat scan and his x-ray. It took a couple times for them to be able to do the cat scan because he had to hold completely still, which is hard to get a three month old to do. He has very upset by the whole situation and so was I.
After the cat scan we had to wait to get an appointment with the specialist up in Iowa city, this took about two weeks. The appointment was a nightmare. The person we were suppose to see was not even there, the lady that met with us was very rude. They were having issues getting their machine to read the cat scan results so they were trying to push me into giving him another one with there machine and I said no. After about an hour they were finally able to read the results but said they would not be able to get him into surgery for about two months, she also started talking about the chances of permanent damage and other issues that my son may have, I tried to explain that we had been told he had a mild version, that he was not suppose to have any damage or need a helmet. She basically brushed me off, I left that appointment in tears and that is when we decided to seek another opinion. After doing some reading online I called Blank Children’s Hospital.
I was able to get an appointment a few days later, the doctor was amazing, he put all my fears to rest, Alexzander had a very mild form, like we had been told in the beginning, it would require one surgery and we would be done. To my shock they asked if we could come into the hospital for the surgery the following week.
We showed up to the hospital at 7 a.m. the morning of his surgery. They did some blood work which was very unpleasant, Alexzander was only a couple weeks short of five months at this time, since he would be going into surgery I was not able to nurse him and he was very upset. My husband walked him around and patted his back, I had to leave the room because every time he would look at me he would cry harder. It took nearly half an hour for him to calm down, when he finally did calm down we moved down to the surgery waiting area, where we sat and sat and sat. He was supposed to go into surgery by nine-o’clock but we soon found out that they had taken someone else in first and we would have to wait until closer to eleven. I was getting really upset because he was wanting to nurse and was not able to do so.
They finally came for him around a quarter after eleven. My husband and I watched the nurse carry him a way, the last thing we saw was him smile at us as the door closed behind him and the nurse. This is when we both just lost it, we sat and sobbed in each others arms. When we finally were able to regain our composure we joined the rest of our family and friends in the waiting area.
The surgery was only supposed to take around two hours but it ended up taking a little longer. He was out of surgery and in recovery around 4:00 but they would not let us in to see him for almost another hour. Seeing him for the first time after his surgery was really hard, they had to take a strip of skull bone out to allow room for his head to expand correctly, he was hooked up to a couple machines and his head was bandaged. I sat with him for a while but he was still sleeping so I went down stairs and grabbed something to eat, the nurse called me up while I was eating because he was waking up and I had asked to call me if he woke up. I got back into his room and he was awake and looking around. I wanted to pick him up but they told me I had to wait until the doctor gave the okay to take the IV out. I told them they had fifteen minuetes to do so or I was picking him up anyway. By this time he had not eaten in over fifteen hours and I knew when we started to get more alert he was going to want to eat. Luckily they heard from the doctor within a couple minutes and soon I had my baby boy in my arms again and he was ready to eat.
My mom and I stayed in the hospital with him over night, I had my husband go home so he could go to work the next day, we were not sure when he was going to get out but we had been told if things went well we may be able to go home the next day. I was still asleep when my son woke up the next morning but my mom was awake. She walked over to him and he gave her the biggest smile, it was like nothing ever happened to him. A couple of hours later we were going home.
Now, Alexzander is almost four years old, he is an amazing little boy who we love so much. Besides a scar on the top of his head there is no long term effects from his surgery. It was a scary time but we got through thanks to the love and support we had from our family and friends.