Ups and downs

The good news:
Peter went for two whole months this time before he needed a blood transfusion!! Last time I think it was five weeks, which even then had been an improvement.

Peter now has a simple G tube, not a G/J, as the J portion (which actually was in his duodenum) clogged. The doctors in Boston felt that Peter would be able to go to just a G tube since he was tolerating the clogged J portion so well. His G tube is still to drainage, but to go from 4 drainage bags with tubing down to 3 really does make things easier. I can hardly imagine how excited we will be when we get down to zero drainage tubes hanging!

Peter is walking more and more now. He has learned how to cruise the couch and he will take walks around the house holding onto his shopping cart which is in turn holding his drainage bags. The nurse or one of us goes behind him and carries the IV bag and makes sure the cart doesn't go faster than he does.

Peter is happy! That is always a good sign.


The bad news:
The G tube is still putting out yellow fluid as well as clear fluid. This indicates that the flow of bile is not always going downstream as it should, but also is getting up into the stomach.

Peter's direct and total bilirubins have been inching upwards. We are not sure why. As such, we are seeing if we can lower it by taking away all enteral liquids except for water. He had been getting tiny amounts of milk, plain yogurt, popsicle, and apple in a mesh bag... for months, as to his desire. So far he doesn't seem to miss these treats and is content with water and brushing his teeth twice a day. The bilis stopped dropping in December and then began to go up. Last liver labs from January 21 were:

direct bili 1.4
total bili 2.9
but, albumin at a much nicer level of 2.7
and the other liver function tests were at better levels too,
however the INR (bleeding time) was up to 1.7 from a low of 1.4 a month or so ago.

The local GI doctor who helps us with our transfusions thought we should do some iron studies to see if Peter needs iron added to his home TPN. The iron could help out with the anemia. In the past Peter's iron levels have been good, but maybe now he needs supplementation. I don't know if anemia from low iron levels would affect his bili numbers and INR. It will be a question to ask if the iron levels come back low.

Neither good nor bad news:
We are making plans to go up to Boston again. Plans include an ultrasound of the abdomen and an upper GI with small-bowel-follow-through, as well as a visit in TPN clinic. Well, more on all of that later... I have just been alerted that my darling son is peeling up tegaderm around his ileostomy and that will be a huge mess if he succeeds in getting the ileo bag off!