On top of the world

So Peter is acting like he just feels wonderful. He has accomplished the task of rolling onto his tummy and back onto his back over the last week. He is working on tummy-time play for twenty minutes at a time. He has been sitting in the highchair contentedly for an hour to an hour-and-a-half, either reading, gnawing on a piece of fruit (in a mesh bag of course, as to not clog up his G/J tube), or just watching the rest of us at the table.

His coloring is good this whole last week. He gets labs drawn tomorrow. We are prepared for a transfusion if need be, but if his behavior and coloring are actually telling us accurate information, then he should not need one again this week. Peter has fooled us all before though... looking just fine, but with labs that tell a different story.

I feel like I am the eternal optimist here, a characteristic that I would not necessarily have claimed myself to have prior to Peter's situation, but the increase in Omegaven and the removal of the enteral feeding tube quite possibly could have helped out his liver immensely. The enteral feeding tube may have been irritating to the very fragile bowel Peter has, and the feeds, though slow, were continuous and perhaps were also too much for him to handle. (Dr. Puder has discussed bowel stress as an added strain to an injured liver several times as we have discussed lab results.) The Omegaven dose for Peter went up by 11 percent about four weeks ago, which I think is a substantial amount when we are talking about a med that is given at 10mL/kg. He went from 100mL to 111.6 mL.

So tomorrow we will look at the lab results and see if Peter is doing as well as he looks, or if he is looking and acting well despite his illness. I do hear and read that with liver/intestine illness combined, the person can seem more well than someone who needs a liver alone, and then suddenly become quite ill. The tranplant listing process seems to accomodate for that by adding an additional 23 points to the listing score for the liver/intestine/multivisceral patients, as compared to a person waiting for a liver alone.

I'll keep you posted on Peter's labs.



**** UPDATE on Kawasaki and coronary arteries from August: Cardiology reviewed Peter's records and images from CHOP and CHB and it seems that Peter has large coronary arteries, but that they have not suddenly enlarged. With his INR elevated already he does not need any kind of anticoagulation. Whenver the INR returns to normal we will revisit the coronary arteries and see if we feel the need to anticoagulate with low-dose aspirin therapy or not. There is a risk of clots with large coronary arteries. We will reimage the coronary arteries at another time when he is put under anesthesia for another procedure, but for now the concerns are minimal and at bay.