Friday, September 21, 2012

An Amazing Evening.

What an overwhelming and fantastic evening we just had.

The boys and I attended the Kaukauna Football game tonight.  Sam was an honorary captain and was out on the field for the coin toss, Spent some time in the student section, heard a crowd of students cheering his name(all wearing shirts with his name on), and received a check from the - Civic engagement group for $2500 to help fund his future trips to Boston.

Read the news story here:

http://www.wbay.com/story/19610224/2012/09/21/students-raise-money-for-child-with-rare-disorder

Thank You to everyone involved.  It was quite overwhelming, and Sam had a blast.  Ryan too, he spent some time with the girls from the group - apparently he doesn't mind the attention of a group of older women!

Sunday, September 16, 2012

Home

Sam was discharged from the hospital Friday evening and things are slowly getting back to normal.

The tube that was inserted in Sam's leg was removed on Friday morning.  His incision will continue to drain for while, but it seems to be causing him less pain with each day that goes by.  Today we did get him to stand and take a few steps, but it will still be awhile until he is back to normal.

Sam will need to remain on IV antibiotics until early October.  Where this infection came from is a mystery.  His blood culture from his line never had any bacterial growth although his peripheral culture as well as a culture from the fluid drained from his knee grew staph. This truly looks like an infection that started somewhere other than his central line.  We just don't know where.  There is a possibility that a previous infection was hiding out somewhere, or the staph was introduced through a scrape or scratch.  We may never know.

We will be meeting with an immunologist in Madison in the coming weeks as they will like to take a closer look at his immune system.  His last few infections are not following a normal course for this type of infection so they will try to determine if there is some underlying issue with his immune system at work.

Also, if you are in the Appleton area,The Kaukauna Civic Engagement group (They do community work/fundraisers to help teach students they can make a difference) from Kaukauna High School will be holing a fundraiser at the Appleton North @ Kaukauna High School Football Game on Friday, September 21st 6:30 Pregame / 7:00 Kickoff. Please join us at the game if you can!!

Wednesday, September 12, 2012

Quick Update


Sam is still in the hospital, where he will be for at least another day or two.

His Endocardiogram looked good, no signs of infection seeded on his heart valves. Very good news.

His surgery went well also. He is still in pain today and his knee is still very swollen. It might be awhile before he is up and about – back to his normal rambunctious self.  With not being able to walk it may be a little while before he returns to school as well.

Thanks for checking in on him, we will post again tomorrow on how he is doing.

Tuesday, September 11, 2012

An Unexpected Detour

Things have been going so well...

We thought Sam had come down with the flu right after we got home from camping this past weekend.  He was very tired and his stomach was upset.  He had been exposed to the summer flu by several people, including everyone who lives in out house, so it wouldn't have been a shock for him to get it.

Sunday evening he was complaining that his knee hurt.  This also made sense as I experienced a lot of stiffness and pain in my joints when I had the flu.

Monday evening he still wasn't feeling well and his knee had started to swell.  Never a good sign given his history with developing unexplained infections in both of his ankles within the last two years.

Into the ER he headed this morning with Mom.  Xray shows a ton of fluid.  Still in a lot of pain and they decided to keep him inpatient.

There is a concern regarding where the infection came from.  With no visible break down of his skin, signs point to something internal.

Tonight Sam had an endocardiogram done to look for Infective Endocarditis - basically an infection in the heart that can sometimes linger and hide even with antibiotics.  Still waiting on the results from that.

Tonight Sam is headed into surgery to have a drain placed in his knee to get rid of the infected fluid.  He will be in the hospital for a few days until the drain can be removed and then have a few more days of recovery at home.

Hopefully then we can get back to a run of good health and get him back to school  - which he has only managed to attend one day so far this year.

Wednesday, September 5, 2012

Sam in the News!

Just a quick update for those of you who don't follow on facebook...  Sam was featured on the local news today!  Here is a link to the story:

http://www.wbay.com/story/19465928/2012/09/05/fox-valley-family-works-to-save-son

Welcome!

There is a lot of new traffic on Sam's site due to his current fundraising campaign and local news coverage.  Thank you for taking the time to visit Sam's site and find out more about him.  We have been overwhelmed with the support we have received and appreciate all of the comments and contributions over the past few days!