A busy few weeks and more to come.

The past two weeks have been crazy busy for our family.  We had Sabrina, an associate producer for NBC news at our house for a day and a half.  Sam was ready to be taped and made a new friend.

 Deb and I got to go out for dinner and drinks with friends thanks to Uncle Todd and Aunt Tanya watching the boys.  A much needed break.  The next day we all headed to the zoo for some more fun.

 

On Tuesday we flew to Boston.  We were not due to be back in Boston until June but NBC wanted to get some footage of us in Boston and they were already in town interviewing Dr. Puder.  We spent some time at the hospital with the camera crew and had our monthly labs drawn. It was a long day for everyone as Sam ended up in the ER in Boston Tuesday night with an ear infection.

It was an interesting experience to watch all of the production that goes into this type of news story. Hours and hours of tape and work just to put together less than 10 minutes of television.

Deb and I were interviewed at length about Sam's entire life and our experiences over the past 5 years. Then the boys headed out to Boston Common for their own interview.

Thursday we had a free day in Boston and spent some time at the harbor.

We also spent a few hours at the New England Aquarium.

Unfortunately Sam was not feeling well on Thursday and was very fatigued.  We still managed to head out for dinner to meet up with Mallory Cyr and her boyfriend Owen.  Mallory also has MID and we have been trying to meet up with her for awhile.  She thanked us for not being weird. Apparently we are better actors than we thought.  Maybe all of this time in front of the cameras is paying off.

On the way home Ryan got to visit the cock pit and meet the the people who were going to get us home safely.  Sam looked at Ryan like he was crazy.  Airplanes are no big deal for him.

We were back home in time for mothers day.  It was nice for all 5 1/2 of the grandsons to spend the day with Grandma.  Amazing that we could get them to all be still at the same time for a picture.

Unfortunately, Sam was still not feeling well on Sunday.  He was very fatigued and was just not himself.  By Sunday night we were really starting to worry. Labs from Monday were all normal and blood cultures are still clean.  He started to perk up a little on Monday and was almost back to normal today, his first day back to school in a week.

Next weekend we will hopefully find a few minutes to rest and recharge.  I think we are booked every weekend after that until sometime at the end of summer. We are excited to get our camper out and spend some time in the woods. We are also excited to be attending the annual Oley Conference for the first time this year.  It will be a great opportunity to spend sometime with other families who deal with some of the same issues we do on a daily basis.

The Omegaven news story will air on Rock Center with Brian Williams on NBC on June 14th at 10:00E/9:00C.  Make sure to tune in and check it out.

We have also added a new facebook page to go along with this website.  We are much better at posting updates on facebook so we are hoping that will continue with the new page.

Dream Big, Live Life on facebook.

Swimming with a central line

It's that time of year where I start to see parents of young children with central lines ask the same question over and over again on the online support groups that I participate in. "How do you swim with a central line?"

Like other parents, we were told several things that Sam could never do when he had his central line placed at just a few months old.  Two of those were swimming and taking a bath.

We struggled with both of these things.  We wanted Sam to live as normal of a life as possible.  We like to be outside in the summer.  Family trips to the pool and camping trips on the river or lake were a huge part of our life and we weren't willing do give up those things.  

Our attitude has always been that no matter what we are told Sam can't do (like live past the age of two, survive without a transplant, etc...) we find a way to do it.  We will research and try things on our own, sometimes against the advice of a physician or two, because we didn't go through everything we have in the past five years to have Sam live in a bubble.  Living life itself means taking some calculated risks.  Jumping out of an airplane may seem crazy to some people, a parachute can fail.  You could get injured or even die.  But some people are willing to take that risk to have that experience.

Swimming with a central line is similar.  For some people it is worth the risk to have that experience of being able to swim.  There are ways to minimize the risk and safeguard a central line from becoming contaminated. 

Now, with that being said, I am not a doctor and I will never tell you that it is a good idea to go against your doctors advice.  Who am I kidding?  I tell people to go against their doctors wishes at least a few times a month. You need to do what is comfortable to you.  Take things slowly and try a few methods to protect the central line if swimming is something you want to try to do.

For us it started with baths.  Then the baths got deeper.  Then Sam played in a sprinkler and with a water table.  Three years ago we added a four foot deep "pop up" pool to our backyard that we could chlorinate, filter and maintain.  Once we realized that we were able to consistently keep his line and site dry we have let him go into the river where we camp for short period of time and he has also spent a few days at the beach with us. He isn't into things that don't look clean, so he really doesn't enjoy a lake or river as much as a pool. This helps because he doesn't really submerge past his waist much if he is not in a pool.

We tried a few different ways to cover Sam's line and this is what we have found works best for us.  We use a similar method for taking baths which allows Sam to take a LONG bath once a week.

First a bit about Sam's dressing. Sam's normal dressing is gauze and  cloth tape.  We have been through many types  of dressings in the last five years and so far this has kept Sam's site the healthiest.

At night we cover his gauze dressing with Tegaderm to keep it dry and stool free.  We use a cut down piece of the paper backing from the Tegaderm on top of the gauze so that the Tegaderm can be removed without wrecking his dressing. This is our first layer for swimming as well.  Most people use this type of dressing to cover a central line and would skip this step.  

Supplies needed for keeping a line and site dry.  We use cloth (3M Durapore) tape and Tegaderm.  We have used large (15cm X 20cm) Tegaderm but sometimes it is hard to get it stuck down with no wrinkles and using multiple smaller Tegaderm pieces is easier.  We use 2 medium (10cm X 12cm) Pieces.  You could use three or more if needed.

We take a piece of paper backing from a Tegaderm and place it on top of the first Tegaderm dressing.  This prevents the outer layer from sticking to the first Tegaderm dressing. The colored writing on this paper also bleeds really easily if it gets wet so it is a good indicator of a leak.  This is taped down to hold it in place.

We then arrange and tape down his line on top of the paper.  Using the tape to cover any "sharp" edges such as the clamp or cap will prevent it from tearing the Tegaderm and causing leaks..

We then apply the outer layer of  Tegaderm one piece at a time making sure that there are no wrinkles in the outside edges.  If there are wrinkles we remove the Tegaderm and try again.  Wrinkles on the edges will leak. We also have smaller pieces of Tegaderm that we can use on any edges that we are not 100% sure about.

The finished product.  All ready for swimming.  We have had these last all day at the water park with no leaks.  If the outer layer does start to leak we can see it right away and it can be replaced.

If there is any moisture under the tegaderm after swimming we change the clave on the Broviac as well as the dressing.  With all of the practice we have had we very rarely even have a small leak.

Recently this abstract was shared with me which talks about how swimming with a central line affects infection rates:

http://jpo.sagepub.com/content/16/1/51.abstract

Big News And a New Video

Sam and I were in Boston this past Thursday for a regularly scheduled check up.  The appointment was uneventful and Sam and I had a pretty good day.  We also got to meet up briefly with Scott and Brad Shutka (Brad also has MID) after our appointment for a little while.

Sam's labs continue to look good each month.  He gained almost two pounds since our visit at the beginning of February.

Our next visit to Boston, in June, will include a Dexa Scan so we can check his bone density and get a bone age for him.  We have not had any issues, but it is not uncommon for kids on TPN to have bone issues.  It's standard for Boston to check this at about 5 years old.

We will also be attending the annual Oley conference in Massachusetts during the same week in June as our appointment in Boston.  We are looking forward to getting together with several other MID families and many other families with similar issues to share stories and advice.

Today I posted a new video.  This one is titled "19 hours" and follows us on one of our one day trips to Boston.

We also have some BIG NEWS to share.  Sam is potentially going to be featured on the prime time news program Rock Center with Brian Williams.  They are planning a story about Omegaven and our family was chosen to be one of the families featured.  A film crew will be in Wisconsin in the near future to interview us and the story should run on television in the next several months.  We will post the air date as soon as we find out for sure.

What we've been up to.

Besides turning 5, we have had a busy few months.  I always think of winter as our down time, a time to catch up on rest while we hide in the house from the cold and snow.  I'm not sure why I think that though, because I don't think that has happened the last few years.

Sam and I are still traveling to Boston every eight weeks.  For about the last year we have been making these trips all in one day.

Our morning normally starts sometime between 3:30 and 4 am with a drive from Appleton to Milwaukee.  With more and more airlines pulling out of our local airport since the beginning of the recession it is just not practical or cost effective to fly direct from Appleton.  The drive takes us just over two hours.  We fly from Milwaukee to Boston and usually arrive right before lunch time.

We have our appointment at the hospital around 1, pick up a two month supply of Omegaven from the pharmacy, and then head back to the airport.  Occasionally we have a few hours to kill in the afternoon and we spend that time hanging out in the hospital lobby or the airport.

We land back in Milwaukee late in the evening and make the drive back home, normally arriving about 10:30 PM.

It's an exhausting day, but getting everything out of the way in one day has several advantages.  It is actually easier; instead of being exhausted for three days (travel day to Boston, day in Boston, travel day home) we are both wiped out for one day but then get to sleep in our own beds.  It is much less expensive; we are not staying in a hotel or checking luggage on the way to Boston.  In general it is just less disruptive to life; less days of work missed for me and less days of school missed for Sam.

At the end of February, however, I had the opportunity to combine a business trip with Sam's appointment travel.  This gave us a few extra days in the Northeast.  Our trip started out with snowstorm which prevented us from traveling when we were supposed to and shifted all of our plans to include a weekend stay.  It did give us the opportunity to meet up with some of our friends.

We were staying in Nashua, NH (about 45 minutes north of Boston) where my employer has an office.  We drove down to Mystic, CT on the weekend and met up with Scott Shutka from New York at Mystic Aquarium.  Scott's son Brad also has Microvillus Inclusion Disease and our families stay in close contact to share ideas and offer support to each other.

Brad and Sam, along with Brad's brother Jackson, had a blast at the aquarium together.

Sammy had a close encounter with a Beluga whale and for days only talked about the "Booger Whale" to everyone who would listen. 

Jackson and Sam really hit it off, which was a relief because the last time we spent some time with the Shutka family I think Sam terrorized Jackson. 

You would have thought these two are professional comedians they way they were hamming it up after dinner. 

The next day Sam and I make a quick trip up to Maine to meet Anna Cyr. Anna's adult daughters are both affected by Microvillus Inclusion Disease.  Mallory is currently living and going to school in Boston and Maisy is studying abroad in London.  What an inspiration their family has been for us over the last few years!

 

Sam also got to spend some time at the office with me and made everyone at our New Hampshire location fall in love with him.

So, besides traveling, what else have we been up to that has prevented us from updating regularly?  Well the holidays were a busy time.  Four Christmas celebrations were enough for me.  Of course the holidays always makes us reflect on how lucky we are to have Sam home with us. We have been so fortunate to have spent so little time in the hospital this last year.

 Our elf had a naughty streak in him this year and even pooped on Sam's pillow one night...

Ryan's school held a fundraiser for Sam and raised $500 selling candy canes for $0.25 each!!

 Speaking of fundraisers, the Kaukauna High School Civic Engagement group had another fundraiser for Sam at Halloween.

 Sam went to the school to deliver a thank you card personally thank them for all of the hard work they putting into raising money to help him contine to travel to Boston.

 We have spent a few snowy days this winter at the Building For Kids in Appleton.  Sam never tires of the firetruck.

We also had cousins Everett and Harrison spend a few days with us, and everyone enjoyed camping out on the floor.

Uncle Todd and Aunt Tanya treated us to a trip to the Shrine Circus when we returned their children unscathed.  This was the first trip to the circus for both Sam and Ryan.

Sam REALLY loved the motorcycle stunts.  I literally have never seen him so excited in his entire life.  He tends to have an attraction to danger, so I am pretty sure we are headed for trouble there.

 

Sam also got to see, and was amazed by, his first 3D movie

I could go on for hours, but really you get the picture.  There is never a dull moment and we are just busy enjoying time as a family.  One last thing though is this...

 Sam and Ryan have started taking Jiu Jitsu.  Ryan started first and I was a little hesitant to let Sam because of his central line, but he really seems to enjoy himself and hopefully it will help teach him some discipline.

Our little warrior.