Friday, January 30, 2009

Dinosaurs Live

Our present to Kayden this year on his birthday was tickets to Walking with Dinosaurs Live. He went with his daddy and said it was the best present ever. Here are a couple pictures and video from the event he wanted to share with everyone.

video

video

More Medical Adventures

McCoy and Kayden have the same hereditary disorder - spherocytosis. Their red blood cells are shaped differently than normal so the spleen kills them and they last only 15 days, compared to the normal person's cells lasting 100 days. Normally, they are able to make more cells than the spleen kills off and have no health issues, but when they get sick, they make a bit less cells and can get kind of weak.

Well, New Year's Eve we spent in the hosiptal getting Kayden a transfusion, because his level had dropped far too low and he couldn't even walk or sit up. Earlier this week, McCoy started doing the same thing. No real symptoms of illness, but super week and would lay on the floor and zone out or fall asleep. So, I took him to the dr and they did all the normal checks and didn't see anything so ran a blood test and his level was lower than Kayden's was.

(Wow, he was really pale!!)

Luckily, between the two incidents, we had been to a hemotoligist (blood specialist) and met him for a regular appointment. So instead of going to ER, I still went to Primary Children's, but just went straight to his office after the pediatrician called in the info. McCoy ended up getting a transfusion as well, hates nurses and doctors with a passion and we were home by 8:45pm. By morning, his color was back, his smile was back and he most of his energy was back.

Come to find out, they both caught the Pavlo virus. The symptoms are usually so mild that you may not notice them. If the virus gets into your bones, you can stop making red blood cells, but only for about 2-4 days. In a normal person where their spleen isn't killing them and the cells have a longer lifespan, this would not be a problem and probably not noticable. For these little boys, it puts them out!

Tomorrow is McCoy's 1st birthday and he is healthy, moving and eating again and I'm sure ready to dig into some cake!

Kayden's Birthday Bash

Kayden is 6. We had a fun birthday where he got his favorite breakfast (Krispie Kreme), took lollipops to all the kids in class, got lots of mommy attention and had a fun family party in the evening.

He also had a friend party on the weekend following that was a blast. He invited over 11 kids total for lunch and games. Of course it was a prehistoric party, even though he did think a few other ideas sounded fun, he wanted to do dinosaurs again. We decorated our basement with all of his dino toys and his 10,000 BC movie posters and had some fun.



A dinosaur theme, but he specifically requested a Crystal Skull cake - the one from Indiana Jones.

Saturday, January 3, 2009

New Years Eve with a View

Every New Years Eve we have our own little family party and eat lots of yummy food and stay up late watching movies and doing a puzzle. This year was a bit different.

On Saturday night, Kayden started having a fever and just getting a little lazy. Sunday morning he was fine and we went to church, but he was just moving a bit slow. When we got home, he layed on the couch most of the day, but did get up to wander around. Monday, we kept giving him Motrin to bring down the fever and he was just complaining the whole day and didn't want to go anywhere or do anything. That evening Boston had 3 Jazz tickets and really wanted Kayden to go. He finally did go and had a good time, but when it was over asked his daddy to carry him to the car, because he was still feeling kind of sick. Tuesday, he was in bed or on the couch the ENTIRE day. He would crawl to get things or go to the bathroom and if he did stand up, he would soon collapse on the floor saying his legs were really wabbly. Wednesday (New Years Eve) he woke up with the fever still. I found him laying on the bathroom floor because he was trying to go to the bathroom and had to lay down really quick and then didn't move. He was so white, with black circles around his eyes and didn't want to eat anything or talk much.

I called the doctor and they said to bring him in before noon, because they were closing with the holiday. We made it there and they took temp and vitals and couldn't find anything. When I explained that he had Spherocytosis (his red blood cells are shaped different and his spleen kills them off - he can usually make more than it kills unless his body is trying to fight something else) they decided to do a finger prick and take his blood levels. When the results came back, the doctor came rushing in and saying they were going to call an ambulance to take him to Primary Children's in case he passed out on the way. I know that people with this disease (me and my mom and sis) do have lower than normal blood levels and he was still able to respond to my questions, so I convinced them to let me drive him. We made it with me pushing Kayden and McCoy into the hospital in the double stroller and Boston walking. The doctor had called ahead and they already had an ER room for us.

Then they came to poke Kayden's finger again for their own test and the nervous breakdown began. He was so scared. They took that, then got an IV in him and kept taking his vitals constantly. Meanwhile, a helper had been sent in to talk him through the whole process and he wouldn't listen to her, so she entertained the little ones and I tried to calm him down. We managed to find a movie he liked and he finally calmed down. After they got the results, they told us that they'd be moving him to the Hemotology/Oncology (cancer and blood disorders) floor to give him a blood transfusion. For medical people, his hematacrit (sp) was at 14 and hemoglobin at 5. While all the papers were processed and room prepared, Chad showed up and was able to calm us all down and promised if Kayden was good he would get a Bionicle toy.

At about 5pm, we were in our room on the 4th floor. Kayden was so weak still, but was excited to have his own room and it was so nice. We had a view of downtown and Kayden was finally ok that he was going to celebrate New Years in the hospital. The doctor came to talk to us and Kayden loved him! He knew the disorder and said that this illness just attacked him like others hadn't and he needed 2 new bags of blood. Shortly thereafter, the blood was started and it was dripped into him over an 8 hour period.

We did get to watch the fireworks in downtown Salt Lake from our window and we tried to sleep, but they had to monitor him every 15 minutes while he was getting a transfusion, so that was a little difficult. By morning, we had managed to get a little rest and he was still weak, but able to walk again and they sent us home. We walked out of the hospital with Kayden finally talking and walking again and telling everyone he passed that he had new blood. We made it to the car and on the way home he was finally talking normal again. He asked me, "How old do you think the earth is?" and I knew that my Kayden was back!

He is a trooper and is back to normal now and ready to go back to school on Monday. We are now setup with a specialist here in Utah for he and McCoy and just the instructions to look for the same signs during another illness. If it continues to get more frequent, then we'll start talking of removing his spleen, but until then, we're instructed to life back as normal with specialist visits every 6 months.