March and April

Lots of "boring" news, but the really exciting stuff will be coming soon when we go to Boston for SURGERY!  Peter went up to Children's Boston last week for a liver biopsy and CT to help plan for abdominal surgery.  The fistula continues to put out more and more amounts, requiring continued weekly electrolyte labs, often followed by yet another tweaking of his TPN (IV nutrition) recipe to keep on top of the electrolyte changes produced by the fistula outputs.  Dr. Jennings, one of the surgeons at Children's, met with us when we went up in March, and it seems like surgery is the best solution for Peter at this point.  It has been a long hope to reconnect the bowel, but for Peter a reconnection is not so simple.  The first thing that will need to be done is the placement of a shunt which will bypass the clot in the portal vein, thereby decreasing the portal hypertension that Peter has in his abdomen.  That will then assist the gut in its circulation and overall health and ability to digest food, as well as decrease the tendency to bleed as much during surgery.  I don't yet know the plan from there, but discussions have included surgery to close the fistula as well; I am not sure of the timing on that yet.

The PICC line dressing was solved with another style of statlock that I found online.  It has a deeper, wider indent at the top, which allows for more clearance room between the insertion site and the statlock.  With that, we decrease the risk of contamination of the PICC site, as the statlock does not rub up near the insertion.  If I get a chance to take and download a photo I will.  (The photo below is from an earlier post and it has the old statlock shown.)  The new statlock style, if anyone is looking at this and wanting to try it to resolve a similar situation, is PIC0220, made by Bard.  The other thing we did to make the dressing change less subject to contamination, was to add another set of sterile gloves to our dressing change, so that the line is kept as clean as possible.  I don one pair of sterile gloves during the removal of the old statlock, after removing the tegaderm with nonsterile gloves.  Then I put on a new pair of sterile gloves to clean the line and put on the new statlock.  We use a third pair on my husband who holds the catheter in place at the insertion site as the old dressing is being removed and I am changing gloves, but before it is cleaned with chloraprep, as Peter is still prone to wanting to move around whether the PICC line is secure or not.

On a non-medical front, Peter is very close to running now!  He runs like a toddler at this point.  It is more than a brisk walk, but not quite the run that a 3 or 4 year old would use.  The look on his face as he runs is priceless.   He is very pleased with himself and his "great speed."  The cheers that his family and nurse give him certainly add to his satisfied self-image... as it should be.

I am having technical problems adding photos tonight, but hopefully can download his running video soon, as well as some new photos of Mr. Peter.