Recently there has been lots of ongoing excitement, lots of changes and many firsts for Mason.

October 28th Mason learned how to take the sterile dressing off of his central line in the middle of the night, and ended up pulling the line out about 2".  This resulted in an infection around the site and an emergency hospitalization the next day.  Mason was treated with IV antibiotics and monitored for a week before they were able to discharged him.  Unfortunately, we were home less than 48 hours before Mason spiked a high temp and had to be rushed back to the hospital.  Due to some communication issues among other things during Mason's admission the week before, we made the decision to take him to Johns Hopkins for treatment and a second opinion.  Mason was admitted to the pediatric floor at Hopkins and was diagnosed the next day with a fungal infection in his central line.  This could have resulted from chronic antibiotic therapy among other things, or just the simple fact that he has a foreign body going directly into his bloodstream.  Although it is the first time he has had a fungal infection (the rest have been bacterial), we are told that it is inevitable with these central lines.  He is being treated with an antifungal IV medication and has remained fever-free since last weekend.  The fungal infections are pretty hard to treat and have a habit of coming back later on despite several days or weeks of negative cultures, which in turn means a longer course of treatment and a longer hospital stay.  We are anticipating discharge sometime towards the middle or end of the week, but no promises.  If the cultures would come back positive at any time, the line will need to be surgically removed and a new one put in.  We are hopeful that this will not be necessary given the fact that this is his first fungal infection and it has not gotten into his bloodstream.  Mason is adjusting to being away from home and his bed, and has been enjoying snuggling with mom and dad and going for wagon rides around the hospital.

We have been VERY impressed with this hospital as a whole as well as with the GI/Nutrition team that will be managing Mason as an outpatient after discharge.  The GI team here has a completely different approach to treating the short gut kids here and has a lot of success with helping to not only reverse the liver damage caused by the TPN, but also with helping the intestine adapt and avoid transplant altogether.  Their statistics and experience are very promising, but this is a foreign concept to us, as we have not been given any hope by anyone that Mason will ever be able to come off of TPN.  So although we are hopeful, we are also not getting our hopes up until we see results. 

Over the last few weeks, Mason has found his voice.  He is now saying "mama", "ba-ba" and "ga-ga'', babbling in his own language, blowing lots of "raspberries", and smiling and laughing a lot more.  He has started sitting up very well without support although he is still wobbly at times, standing with support and in his exersaucer, pushing himself up on his hands and belly, and enjoying sitting on his rocking horse.  He is getting much better with his fine motor skills as well, and is very successful at finding everything that he's NOT supposed to play with.  During his more recent hospital admissions, Mason has also gotten his first and second teeth!

Please continue to share Mason's story, provide encouragment, and pray for our family.  Please also be patient with our ability to provide updates as we try to adjust to so many new things, and we will make more of an effort to provide quick updates whenever we are able!  Thank you for your support and please don't forget to check out the Activities and Events section for more ways to show your support!