Tuesday, March 2, 2010


We are still inpatient and I have grown extremely impatient.

There are certainties that we will have to deal with during every admission whether it is in Milwaukee or Boston.  Some good and some bad. 

These are teaching hospitals which means a lot of students.  Typically these people have no bedside manner and very little experience.  Combine that with their superiority complex and "I know everything" attitude typically leads to confrontation.  With that being said, I somehow managed during this stay to meet not one, but two, residents that I didn't want to hurt.  It was refreshing to talk to a GI and surgical resident who actually wanted to hear about Sam's history, wanted to hear my input, and actually showed in interest in Sam instead of trying to shove their almighty and all knowing wisdom down my throat.

Unfortunately other things have not gone as well.  The hospitals investigational review board has denied our request to continue Sam's "investigational" therpary (a.k.a. Omegaven, the one thing that made Sam healthy and doesn't damage his liver).  I won't go into a lot of detail on this, but pretty much the entire day Monday was spent trying to work out a solution.  It just isn't going to happen.  More about this later.

The plan since yesterday was to continue IV antibiotics and give Sam's site a chance to heal.  We want to do everything we can to try to save his line as there are only so many places that a line of this type can be inserted and we don't want to use them all up.  This plan means leaving the hospital on Wednesday and going home to continue antibiotics.  The plan is a good one and I was hopeful that we could at least extend the life of this line.  It does appear that the infection got to the cuff on Sam's line.  It is extrememly hard to completely get rid of the bacteria from the cuff so there is a good possibility that even if we can get the infection under control and if we can get the site to heal, the infection could come back at any time.  We have seen this before, sometimes as soon as we stop the antibiotics the infection comes back.

I was hopeful that things would go as planned and that we would be heading home on Wednesday.  Tonight we changed Sam's dressing and I am not quite as hopeful after getting an up close look at the site.  In my opinion his site looks worse today than it did yesterday.  I will still give the antibiotics a chance to work, but I am nervous about leaving the hospital with his site in this shape.  Part of the problem lies in the fact that once we are discharged, we are two hours away.  The other part of the problem is that is is really not healthy for Sam to be in the ER for another 7 to 8 hours if we need to be readmitted.  Our other option would be to try to wait this out and have the line changed in Boston as we are scheduled to head there in two weeks for clinic.  At least then we can avoid the ER.  Neither option is very appealing.

Sam is bored and ready to get out of here.  We are ready to celebrate the fact that we have beaten the odds and we want Sam home this weekend to celebrate with us.  I do not like to have to make these decisions that can have such a huge impact on Sam's health and I am not looking forward to rounds tomorrow when I have to voice my concerns.

There is also the fact that as it stands right now we will not be able to supply Omegaven to Sam while we are inpatient here.  Whether we extend this stay or some back next week this problem is not going to go away.

We have been considering making some major changes to Sam's care team for some time now. At this point I am not really sure what that means.  Something has to change.  We are stuck in a situation where our belief is that in order to maintain Sam's health in the best way possible we need to continue to participate in the Omegaven study.  Unfortunately that means traveling to Boston every eight weeks.  I am not entirely certain how much longer we can do that. 

Each trip out there just got more expensive as Sam tunred two and is now required to have his own seat on the plane.  Each trip, with travel, lodging, meals, cab fares, and whatever else comes up costs between $1500 and$2000.  On top of that, we have to add the expense of lost wages for both Deb and I as we take a varying amount of unpaid time off of work to manage all of this.  It also means that the team that we rely on for the majority of Sam's care is over 1000 miles away from us. Due to ego's and hospital politics this also creates additional problems when we need to seek care closer to home.

We know that something has to change, but we are just not certain what that is yet, our current hospital stay has really driven home the fact that our current situation is not ideal and is not best for Sam's health.  Our optimal situation would allow us to pick out the best parts of each team and move them all into our basement.  Since that isn't going to happen we need to look at what is best for Sam and try to make it work.  That will most likely mean eliminating some parts of our team and including new parts.  It may mean completely moving all of Sam's care to a new hospital. 

Hopefully during rounds in the moring we can finalize a plan for our current infection treatment and decide how to proceed for the next few days/weeks.  Deb and I are also going to decide tomorrow whether we think we are going to be home on Saturday and move ahead with party plans or cancel everything and try to plan for later.

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