Peter's last check up was great in terms of weight gain.  His arm measurements indicated that the weight was real weight, not just fluid gain.  We decided to give sprironolactone a try again.  Spironolactone is a diuretic which should help Peter to lose some of the ascites fluid along with some of the sodium.  That should then help us to be able to afford him a little more sodium in his diet without the extra fluid accumulation.  It did not help the last time he tried it, but I can't figure out how to decrease sodium further, given that a significant part of his diet is yogurt and Lactaid, both of which have naturally occuring sodium in them.  His formula is one of the lower sodium formulas.  He eats only low sodium foods on top of that, and his TPN is as low in sodium as they can get it too.  So, we are trying this diuretic again.  I can't tell if it has helped, but it has not seemed to cause a problem at any rate.

He has been on ursodiol now for about a month, and that has seemed to be quite helpful with him digesting fat.  The liver numbers seem to indicate that this med has helped as well.  Ursodiol is a bile salt, and is often used in gall bladder disease and in TPN cholestasis.  I think it may be used for short gut as well, but not totally sure of that.

Vitamin D levels indicate that his levels are still is too low on 2000 IU/day, so he is now going up to 10,000 IU/day for 6 weeks to rebuild his levels.  His dexa scan two months ago indicates that he still has osteopenia, which is one of the downsides to long term TPN.

So the down side to the visit is that Peter's spleen is considerably larger by physical exam than it was back in February when the last endoscopy was done to band off enlarged esophageal varices.  ( I see that I forgot to post about that, but basically he had a scope done to check for large varices and Dr. Kamin did end up banding two of them that were a little large.  This was done as follow up to the  bleed he had after his fistula surgery last Fall.)  Peter was due to have another scope in August, again as follow up, but in light of the spleen size and the platelet decrease, he wants Peter back sooner to rescope and check for new or enlarged varices.  Instead of returning in 8 weeks as hoped, we return in 3 weeks from the last visit.  If the varices in the esophagus are very large, they can bleed and not stop.  Banding can be done to shrink the varices and keep that situation from occurring.  Meanwhile, we are looking into what can be done about the spleen itself.   Peter's platelet count has been in the low 30,000 range the past couple months. He is not bleeding, but the number can't get too much lower without real concern for spontaneous bleeding.  A splenectomy is likely not a possibility, but there may be a way to embolize the circulation to it to decrease its size and restore the platelet and white count values to more normal levels.  The procedure is called a partial splenic embolization.  We should know more about i,t and whether it is the route to go with Peter's spleen, after this trip.

Peter is getting a little tired of the trip lately.  It is hard for him to understand why we need to keep going up there.  He used to love the trip, but we are going so often over the last year, that there isn't much time to build up anticipation for the next trip.  We should get to a point again where the trips space out further, and we are just viewing this as more bumps in the road, but I will have to figure out new ways to make the trip fun again.