Saturday, August 22, 2009

The Second Time Around

This past week has been so stressful! On Sunday afternoon we were getting ready to have a BBQ with some friends when Kaiden got very sick. He was throwing up nonstop and I immediately knew something was wrong. My husband and I drove directly to Children's Hospital and left our friends at our house, by the time we got into the Emergency Room he had thrown up everywhere and was clearly in so much pain. I was a nervous wreck and was not about to stand in line with all the children that didn't even look sick! So I marched over to the triage door and told the nurse that Kaiden has Hydrocephalus and is throwing up everywhere. Since vomiting is a sign of a shunt malfunction they took us immediately. Once we were done with the triage they sent us back out to the waiting room. I was not happy about this at all, and apparently Kaiden was not either, he started throwing up more and more. So I banged on the triage door again and demanded we get seen immediately. And we did.

Now since I am with my son everyday, I know when he is sick and when there is clearly something wrong. I wanted to tell the nurses off when they said he had a stomach flu! This was not the stomach flu! I felt like I had to educate the nurse on what Hydrocephalus was because it seemed like she had no clue. Once the Dr. ordered a head CT, I felt a little more at ease. Since it was the weekend the Radiologist was not there nor was any of the surgical team that Kaiden sees regularly, so the PA on call was contacted and she was to read the CT and make a decision. He definitely was in need of surgery but I found out that the PA doesn't know what they are looking at either when they read the brain scans, because she called us and said that he had Hydrocephalus ( duh) and that they needed to change the speed again on his valve. Something inside me didn't sit well, and I decided that since they were going to admit him and that he would see his regular surgeon in the morning that I wouldn't express my concerns too much. Once we were sent up to a room I felt so much better, since we have been on that floor many times before I recognized nurses and immediately felt OK.

They put Kaiden on an IV drip and gave him nausea medicine to stop the throwing up, which didn't help because that entire night, every two hours, we were cleaning Kaiden up and calming him down. When you have a shunt malfunction, it is probably the worst headache that you can possibly imagine. Kaiden kept looking at his nurse and you could see on his face that he just wanted him to take his pain away. Thank goodness for this great nurse, Adam, he was so cool and made Kaiden feel as comfortable as possible. It was a very long night for everyone and I couldn't wait for the surgeon to come in the morning to give us a better outlook on everything.
Dr. Woodward came in about 8AM and took one look at Kaiden an said, " Oh yeah, we need to do surgery now!" She went back to the nurses station and pulled up the CT scan from the night before to show us. The scan was scary! I have seen many scans of Kaiden's brain and this didn't even look like his brain. Normally Kaiden's brain has very large ventricles and a small amount of brain mass around them. Also you can normally see the shunt valve sticking inside the ventricles and this is to pull the fluid out and drain into his abdomen to absorb normally. With this new scan his ventricles were non existent and the shunt valve was stuck in his brain mass and all the fluid that normally is in his ventricles was filled between his skull and brain mass. This is what was causing the extreme headache and vomiting. The surgeon told us that they would go in and replace valve and clean out the tubing because brain matter was most likely clogging it, move it back into the ventricles to fill them back up, and also drill two "boar holes" in his skull, one on each side of his head, to let the fluid drain out from under his skull. This scared the crap out of me. All I could think of was Frankenstein....but his holes would be on the top of his head not the sides. They reassured us that everything would be fine and that they would open his original incision and not make the holes on his head very big at all. An hour later he was in surgery and I couldn't wait for it to be over.

Two hours later the surgery was over and the Dr. came out to brief us on what they found. They ended up replacing the whole valve and moving it further up his head, they also put a smaller reservoir in as well. ( which is the piece you push on to see if everything is working OK.) Once we got to see him I felt a lot better and I knew that it was just a recovery that was ahead of us. The next day he went in for another CT scan and they found that all the fluid was drained and the shunt was in the proper place, so now they just needed his ventricles to fill back up and push his brain up so that there is no gap between his brain and skull. Kaiden was definitely not going to feel good until this happened because it is like his brain is moving around in his head and that can cause a lot of pain. After 5 days in the hospital he finally started to feel better, and the Dr.'s sent us home.

Now we just continue as normal, Kaiden is still in pain from his incisions, he won't even turn his head to the right when laying down, I am assuming this is because it hurts. He also has such a large head still that sitting up can be no fun either, because he falls back or to the side and he doesn't have much arm strength to catch himself. We go back to the surgeon in a week to get an ultrasound and check that his shunt is doing what it is supposed to. Also we start occupational therapy next week too, so that will be good for his fine motor skills.

We want to thank all of our friends that came and visited us in the hospital, we don't have any family here so you don't know how much that meant to us. Kaiden's physical therapist even came and visited him, he was so happy to see her! Since Kaiden's diagnosis I have been having a very hard time dealing with all of this, so it is nice to have support when you need it most. For everyone who supported us through all this by leaving text messages and Facebook comments, thank you as well! You were definitely our support through it all. I even had an unexpected email from a mom in Tennessee, her daughter was born with Hydrocephalus and is living a very normal life. She has had some similar situations that I have been through, so it was good therapy to read her email. We are just going to look up from here and pray that everything goes well. Chris and I are planning our actual wedding ceremony and reception that we never had, so that is something to look forward to.

Here is a link that some of you may want to look at. It compares a regular brain scan to a brain with Hydrocephalus.

check out the images they have on this site...Kaiden has the VP shunt that they are showing but his incision site is on the right side of his head not the back.

Saturday, August 15, 2009

Help is on it's way!

Hi everyone! The last few days have been extremely exhausting but for the first time in a long while we have great news!! On Friday we got the chance to tour the EPU facility that Kaiden will be going to for all of his therapy. The place is a wonderful. The staff is amazing, kind, and caring. When we first walked in the beautiful building we were greeted with such a warm smile and genuine hello. The director of new patients came and introduced herself and escorted us into a conference room. There she told us about the history of the organization and how everything works. She let us ask many questions and address our concerns. The woman also was able to relate to my feelings of this whole experience because her daughter had Leukemia and she was living in and out of hospitals, going to weekly Dr. appointments, and stressing about what was going to happen next.

She was very excited to have us see all the rooms that Kaiden will be in and what will happen. She first took us to the therapy rooms where he will be getting one on one Physical Therapy, Occupational Therapy, and Speech Therapy. Then he will be taken into the group room where all the children are from newborn to 18 months. They all have either severe handicaps, mental retardation, or developmental delays such as Kaiden. They have a structured setting where they play, have snack, learn sign language, and sing songs. It was so amazing to see kids that were of all different backgrounds together as one, and the sign language was so amazing to see! Since Kaiden has a problem communicating for his age, I think that the signing will be a great alternative for him when we are trying to teach him to speak more. As it stands now he is very quiet, moves his lips and nothing comes out, or he yells very loud.

When Kaiden is at the facility he will be there 4 hours a day and I am not allowed to leave the building. When he is in class I am welcome to join him or they have support groups my husband and I can attend, a library we can research and read about our son's condition, and also classes on how to be an exceptional parent ( hence the name Exceptional Parents Unlimited EPU).
We are so excited to have Kaiden start here and the only down fall is that he is on a waiting list and it could be months before we start. Let's pray it wont be too long!

This morning we had a Pediatric Opthamalogist appointment for Kaiden and that went great as well. What I didn't realize is that they had to dilate his eyes and that was hard just to watch. Now, before I go on I will tell you my husband does all the shots and needles with my son, NOT me! I have to leave the room, it just makes me cry for him. But this time I stayed and watched and I hated it. They bandaged his eyes and put a light in them, and as the assistant was taking off the bandage she scratched his face and he started bleeding. Then she pins him down as my husband helped her and put a numbing agent in his eye. He screamed and then she put the next set of drops in. We were told to wait in the waiting room so his eyes can start to dilate and get blurry. I remember what it feels like and I can only imagine what it was like for my 8 month old. After a half hour past we went back into the room and the Dr. came to examine him. They had all sorts of lights and lenses and I still cant figure out how he was able to look at anything because Kaiden was squirming the whole time. Lastly they had to check his optic nerve for any damage due to his ACC, and that was a pain. First the Dr. geared up with the strangest looking helmet I have ever seen and had my husband pin him down in a "full nelson" and I was at his feet pinning those down. The Dr. pried his eye lids open and put an extremely bright light in them and Kaiden was furious. I haven't heard him scream like that ever, and he even had a needle put in his head once with no numbing and that scream wasn't anything like this one. But despite all the drama he had no vision problems, besides being slightly farsighted. We have to keep going to these checkups for some time so we will be returning there in 4 months. Joy.

So since the last few days were full of adventure we will be relaxing tomorrow by the pool and having a BBQ with some friends, because come Monday at 8 AM we will be admitting Kaiden into Children's Hospital of Madera for a swallowing test. He has to drink a barium and they will xray his swallowing patterns to see what is causing him to choke all the time. Once again joy.

I will keep everyone posted on those results in a few days and in the meantime.... here is a link to the Hydrocephalus WALK that we are participating in. Its in October and we cant wait. We need all the support we can get for this organization so they can find a cure, research, and provide grants to Dr.'s who want to study hydrocephalus throughout there careers. We are very passionate about this cause and would love for everyone to donate or walk with us. It is going to be such a great day! Kaiden's brain surgeon is the honorable chairman and we couldn't be happier!

I am off to bed since it is almost midnight and sorry for any typos on this blog... I am exhausted!

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!