Tuesday, May 14, 2013

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.

Thursday, May 2, 2013

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.  Sam's medical team does not endorse swimming with a central line.  You need to do what is comfortable to you.  Have an honest and straightforward conversation with your medical team about what you want to do. Take things slowly and try a few methods to protect the central line if swimming is something you want to try to do.  Over the last several years we have become more comfortable with this as we have had more and more success with keeping both his line and site bone dry even after swimming for several hours.

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.  While in our pool we do not keep as close an eye on the dressing for leaks, but outside of that we check frequently and pull Sam out of the water for a replacement guard if any leaking is detected.

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 prior to the line or dressing getting wet.

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: