Tuesday, June 15, 2010


I can't believe that it has been over a month since we posted, summer seems to be flying by.

Since our last post, Sam and I traveled to Boston for a checkup.  Traveling was hell this time as we spent a fair amount of time sitting on the runway both on our way to Boston and on the way home.  Sam was not pleased.  Overall the rest of the trip went OK.  Sam's labs are looking good and his growth is following the same curve that it has for the last several months.

We had his central line site looked at while we were there as the stitches were causing a fair amount of skin irritation.  Since it wasn't affecting the rest of the site the decision was made to try to leave the stitches in for a few more weeks.

Unfortunately the irritation caused Sam to rub at the site which ripped the stitches out just a week or so after we got back form Boston.  Within days he developed a site infection.   We treated with antibiotics and the site seemed to improve and begin to heal.  Yesterday the site looked red again and was discharging a small amount of puss again.  We are back on antibiotics and waiting to see if we can clear the infection completely this time.

Last year we spent almost the entire summer dealing with multiple site infections. We were hoping for a fun filled summer this year, we will have to wait to see what happens.  We had a lot of plans last year and most of them got canceled.  I just don't want to disappoint Ryan this summer by spending multiple weeks inpatient.

In between dealing with Sam's site infections, we have been very busy already this summer.  Sam got to swim for the first time (and for those of you reading that cringed at the mention of Sam, we have some up with a system that keeps his central line completely dry).  Sam is not able to swim in rivers, lakes, or public pools.  There is just too great of a risk of his site getting wet and contaminated with bacteria.  We already have enough of that going on.  We were able to purchase an inexpensive pool to set up in the backyard that is chlorinated and filtered.  Since we can manage the water and we know the pool is clean, we are comfortable with Sam swimming in it. Sam is definitely a fan of the water.  We had beautiful weather at the end of May and were able to get in the pool a few times.  June has not been as kind and we have been spending the last two weeks dealing with what feels like non stop rain and cold weather.

Ryan and Sam also received an early Christmas present from Oma and Opa in Georgia. Our old swing set was here when we bought the house, and was not in very good shape.  Ryan and Sam both love the new one and it is much safer, and a lot more fun, then our old one.  Putting it together was not as bad as I originally though it would be (Thanks for the help Scott!) but it still meant a few long days of work to get it all done.

We have also learned that Sam has a very hard time regulating his temperature when the weather is warm.  He overheats very easily, even when he is hooked up to IV hydration during active times.  Luckily, he realizes that he doesn't feel good and heads for the house or a shady spot when he starts to overheat.  It is going to take careful planning to manage this during warm weather outings this summer, and we are planning on spending as much time as possible this summer outdoors and having fun.

On the Omegaven front, we still have not made any progress.  We are still working with Madison to work on a few options to try to get Omegaven here for us, but I am not very optimistic.  Sam and I are headed back to Boston on the 14th of July for a quick check up before we hurry back to be in Wisconsin for my brother's wedding.  We will also be meeting up with Bradley's family while we are there.  We still don't know if we will be able to return to Boston in September, but we are doing everything we can to continue with Boston and Omegaven for as long as possible.

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