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.

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