Friday, August 30, 2013

Upside Down

Our lives have been turned upside down again. Our family needs your prayers once again. Scott has been in the hospital for over two weeks now fighting Guillain Barre syndrome. He was airlifted to Kansas City on Sunday night and is now in the neuro ICU at KU Med on a ventilator. GBS is a very scary and crazy disease.  Basically your own body attacks your nervous system and paralyzes you.
This all started 16 days ago (which feels like 2 years ago) when Scott felt a tingling in his hands and feet. The next day his hands and feet started to feel numb and he went to the ER, but was sent home.  I remember him doing some research on the Internet and saying that he found this Guillain Barre syndrome and he thinks he might have it and that it is not good news. The next morning he had a really hard time walking and we took him right back to the doctor who admitted him to the hospital right away. They did a spinal tap and confirmed GBS. He was moved to the ICU where he started the IVIG treatment right away. His hands, arms, feet and legs continued to get worse and he lost all feeling in his extremities. The biggest fear with GBS is that it can affect your respiratory system and you have to be put on a ventilator.  Scott's respiratory function remained stable and we were so thankful. On the fifth day of the treatment he developed asceptic meningitis (which is a rare side effect of the IVIG), which made him feel horrible. He said he felt like he had the worst flu on top of being paralyzed. They were able to treat his symptoms and he started to feel a little better, but the GBS was still progressing and paralyzed him even more. By the end of the week they felt like he was stable enough to go to rehab. He had a couple of days of rehab and then last Sunday he was feeling worse. He was extremely weak and just did not feel well. We made the decision to take him back to the ER. The ER doctor felt strongly that he should be transported to a different hospital that has a better neurological department. The decision was made to airlift him to Kansas City in the middle of the night. He had to be intubated for the transport and has remained on the ventilator, because his respiratory function had declined.

So, once again our family packed up in a hurry to follow a loved one to a hospital in a different city.  We are so thankful to have family in Kansas City.  We are staying with Scott's brother and that makes things a little easier.  Scott's family has been awesome and has been here the entire time. It is times like these when you realize how important family is.  We are all hanging in there and doing the best we can to get Scott through this.

I am going to write more frequent updates on the blog.  Please keep our family in your thoughts and prayers.  We are confident that Scott will make a full recovery, but it will take time.

Wednesday, August 7, 2013

Midweek Randoms

Here we go again.  A lot of random things.

-Hannah has been working hard on swimming this year and she is doing so good.  She can make it the entire length of the pool now.  She loves to swim and wants to practice all the time.  Most of the time she doesn't wear her floaties anymore.  She is very comfortable in the water.

-We have weaned Evan off his last blood pressure medication over the last two weeks.  We had a blood pressure check last week and it was high (the first one after being completely off medication) and I was so disappointed.  I was a little nervous, but I know that one reading doesn't mean a lot.  We need to see the trend.  We went back the next day to get it checked and it was normal again.
He is getting so big and is sitting all by himself now

-Hannah and I baked some more fun cupcakes.  Hannah received this fun cupcake book from Scott and LIsa for her birthday and she loves to read it and wants to make all of the cupcakes.  We are starting with some of the easy ones.

How about some spaghetti and meatballs?

We had a lot of fun making them and they tasted really good.  The only problem is that we were not patient enough and put on the spaghetti frosting when the cupcakes were still a little warm and our spaghetti started melting:)

-I have been blogging for three years now.  I am getting ready to print our third book.  I am so happy that I have kept up with the blog.  We love to go through the blog books and read about all of the things we have done.  I would not remember half of Hannah's life if it wasn't for the blog.

-Hannah moved her piano on the front porch last week and was making music and singing for everybody.  Then she went inside and came back with two cups that she put out for money:).  She was a little disappointed that nobody stopped!

-We went up to Kansas City last weekend to visit cousin Bennett and Smith.  Hannah loves to spend tie with her cousins.  We went swimming and Smith went down the slide with Hannah.
-We stopped for a cupcake treat the other day and let Hannah eat it in the car.  Surprisingly she didn't get her entire carseat dirty.

-Rumor has it that Drew Barrymore bought a property in downtown Bentonville.  So, we are practically neighbors now.  Welcome to the hood!