Liver concerns and another cancelled surgery

We recently returned from another visit to Boston which entailed more than our usual CAIR visit.  This visit also involved an abdominal ultrasound to look at the liver and kidneys, a CT to look at the chest, and endoscopies of the esophagus, fistula, and ileostomy. 

The ultrasound suggests that we need to follow up with a liver MRI to help further establish whether Peter's liver is declining.  There is a lesion on ultrasound, which hopefully is nothing, but could be showing that the liver is entering the stages of cirrhosis, versus staying in his current stage of fibrosis.  The ultrasound of the kidneys was to see if kidney stones are developing, as Peter has high levels of calcium in the urine now.  His nephrologist at CHOP feels that the IGA nephropathy is still in remission, and that the calcium is likely due to the high levels of IV sodium needed to compensate for the fistula losses, or due to too much vitamin D.   We hope to get the cause identified and removed shortly, and fortuately we do not see calcium build up in the kidneys.

The CT of the chest was ordered because the Vascular Anomalies Clinic physicians saw enlarged chest vessels on a portion of an old abdominal CT and want clarity if he has enlarged pulmonary vessels.  Per the CT, he does.  A "quick" trip over to cardiology established that the cardiologist is not alarmed, and the cardiac echo and EKG now are the same as a year ago.  However, the chest may need a follow up MRI as well.... to be determined soon.

The endoscopy was the big test that we were waiting for on pins and needles, as it was to reveal whether Dr. Jennings would be able to close the now high-output fistula next week.  The disappointing news is that the bowel is more complicated than hoped.  He has two "chambers" in his bowel below the stomach, which both have connections to the fistula, and the fistula is physically necessary for draining a loop of bowel that goes nowhere.  That leads us back to the idea of needing a bigger surgery on the bowel, trying to determine if the liver is healthy enough for recovery from a larger surgery, and whether a shunt to decompress the portal hypertension is needed or not.  We essentially have 3 options it seems: 
1. do nothing (but is Peter headed for liver failure now, and we are unable to advance feeds on Peter without the fistula going up in output),
2. take a chance on the surgery (but Dr. Jennings does not want to do that without establishing a reasonable chance that the liver can handle the surgical recovery, hence the liver imaging we did and are still planning), or
3. do transplant (but multivisceral transplants come with their own big set of problems and serious risks, and we are not clear yet if we could do an isolated liver transplant on Peter).  

We will be returning to Boston soon for the MRI, the actual meeting with the Vascular Anomalies Clinic, and hopefully leaving with answers as to whether this child is going to have surgery to get his bowel fixed enough so that we can resume advancing feeds and begin weaning him off TPN like we did a little over a year ago.