Wednesday, August 12, 2009

The Journey Begins.....

August 12, 2009

I have created this blog to journal my thoughts, questions, concerns, milestones, and knowledge of my son's recent diagnosis of Hydrocephalus and Agenesis Corpus Callosum.

My son Kaiden Richard Simpson was born December 10, 2008. He weighed a healthy 7lbs. 1oz. and was as cute as a button. My pregnancy went as normal as can be expected including the daily morning sickness but for me it was "all day" sickness until the day I delivered. My delivery lasted a total of 13 hours and was very painful. When Kaiden delivered he looked as though he was vacuumed delivered, his head was black and blue and abnormally large. He was admitted into the NICU for a day with jaundice and was released with no complications. On Kaiden's first Dr's appointment there seemed to be no problems, although his head circumference was in the 82nd percentile for his age. His Dr. paid no attention to that and told us he looked healthy. Gradually I started noticing many changes in my son, from crying nonstop, to never being satisfied and crossing his eyes all the time. His head was growing larger and he would scream when trying to breastfeed.

My husband and I decided to change insurance just before Kaiden's 2 month check up, and we decided to go to a pediatrician that was recommended by friends. On our first appointment our Dr. walked in and before even examining him asked why his head was so big. We just laughed and said it had always been big and that we were not concerned. But the Dr. definitely was curious. She told us to wait till the next routine check up and she would check the size of his head and if it had drastically grown she would order an ultrasound. We were still not concerned, although I look back now and I was always curious as to what possibly could be wrong with him, if anything at all. Meanwhile Kaiden could not stand to be laid on his stomach and wasn't hitting any milestones.

By the 4 month check up, Kaiden's head circumference was over the 100th percentile and he was looking worse. He now was constantly looking down and cried a lot. His pediatrician ordered for an ultrasound of his brain and prepared us for the worst case scenarios. A week later we were in the Children's Hospital of Madera getting an ultrasound done on my son. I will never forget that moment for the rest of my life. The ultrasound technician told us immediately that Kaiden had massive fluid in his brain. She told us that our pediatrician will be contacting us soon. I didn't want to leave. I had so many questions to ask. When we got home I called the pediatrician myself and told her what was seen on the ultrasound. After a 30 minute conversation with her, and lots of tears, she told me that he has what is known as Hydrocephalus or "water in the brain".

Less than one week later we were admitted into surgery and Kaiden was getting a VP shunt into his brain. The VP shunt is a programmable one way valve that acts as a drain in his ventricle to force the blocked cerebral spinal fluid out of his ventricles, down his brain stem and absorbed into his abdomen. He has a incision on the right side of his head and a small one on his tummy.
Although his surgery is over we have to constantly monitor his behaviors for any abnormalities such as vomiting, irritability, raised fontanel ( soft spot), and crossing of the eyes. Many people with Hydrocephalus have just one or two shunt replacements in their lifetime and some have hundreds. So you never know until a sign of an infection or blockage happens that another surgery needs to be done.

After surgery Kaiden seemed to be doing well until about a month later. He was very quiet and non emotional and I noticed that he started crossing his eyes again. I called his Neurosurgeon and she told me to bring him into the E.R. immediately. Once there, they admitted him and he was given an MRI to see if the shunt was working properly. Sure enough, it was not pumping the fluid out fast enough so they needed to adjust the speed. Luckily it was non evasive and could be done with no surgery at all. They put a magnet up to his head and it some how turns the dial to a faster flow.Amazing huh? After a few days he was a completely different child. He was smiling, laughing and even started to yell ( he used to whisper).

Like all follow ups with surgery they want you to see an few different Dr.'s to make sure everything is running "smoothly" and in this case it was a Neurologist. It took months for the appointment so in the meantime it was once a week PT and lots of tummy time to catch up on some of his milestones. We started to notice an increase in the posturing of his arms. He was very stiff, didn't use his right arm, nor did he turn his head to the right often. He also was still clenching his fist like a newborn would. These things were said to be stiffness from the pressure of the fluid, or maybe a small case of Cerebral Palsy, but the Neurologist would confirm that with us at his appointment.

Finally the day came for the appointment, and to be honest, we were expecting a Cerebral Palsy diagnosis. Boy, were we wrong. Almost immediately after the Neurologist came in he began to examine Kaiden's hands. He asked us if we had ever gotten an xray on them. Puzzled, I said no, and he said that his hands were very small. I never noticed that. Maybe because I see them everyday? He then asked many questions of family history of mental retardation and and birth defects. He then excused himself from the office and wanted to go look at his MRI films one more time. After about 20 minutes he returned and told us, " I am afraid I have very bad news." Um, OK? He began to tell us he has what is called Agenesis Corpus Callosum. Every brain has millions of fibers that connect your right hemisphere to the left. This controls memory, emotions, learning skills, language, and motor skills. Well, Kaiden is completely missing those fibers, called Corpus Callosum. This came as a complete shock to us. Not only have we never been told this before but he has had 3 CT scans and an MRI. Why hadn't anyone noticed any of this before? We also were told that the Corpus Callosum develops in utero between weeks 5-15. Our Neurologist told us that this diagnosis is found usually at the 16 week ultrasound. I was never told anything.

It is now 2 weeks after finding out about the latest diagnosis and we are continuing to cope. Kaiden has been accepted into a non profit organization that will give therapy and resources for him free of charge. Also he is going in for a swallowing test because he is gagging on most foods and sometimes even his bottle. But it seems the drama still continues, his pediatrician called me back after I had called to tell her the latest and she was shocked as well. She began to tell me that the Radiologist that originally had read his MRI should have notice the Agenesis Corpus Callosum (ACC). Once I heard this I began to second guess the findings. Did they miss something, is the Neurologist wrong? I need a second opinion!

So, that is where I stand today. Tomorrow, I am calling another Neurologist just to get a second opinion and to also get some clarity. Even if Kaiden is said not to have ACC it still wont change anything. He still is missing milestones, has some motor skill problems and still doesn't crawl or roll over, but I can at least know what is actually wrong with him. Don't get me wrong, my son is happy, playful, loving and wonderful. But he definitely is behind and has some physical difficulties.

I will continue to post a blog as news happens with Kaiden, good and bad. I hope that this will be of help to those who are going through the same thing that our family is. As for now, lets just pray that Kaiden grows to be a happy healthy boy and loves football and nascar as much as his daddy does!

No comments:

Post a Comment