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!

New year, new PICC

The replacement PICC procedure went well. Dr. Cahill at CHOP was able to rewire the same size and type of PICC through the same opening, and it was able to be done without intubation, just sedation. There was some initial hold up in getting into IR because there has been some type of recall on the PICC that Peter was to receive, but after scouring the hospital, one was located that was the right size and type and not of the recall lot.

Overall the procedure went well and I was finally feeling relaxed. As we were getting ready to go though, I asked for a copy of Peter's labs so I could pass them on to the doctors and the company who prepares his TPN. This is a routine request I have wherever we go and labs are drawn. It is never a problem in getting the labs. I carry a folder of Peter's labs with me and in fact had gone into the folder to show one of the nurses in IR his last set of labs. To get a copy of labs this time though was QUITE the ordeal "due to HIPAA regulations," I was told. It didn't seem to matter that just two days ago that CHOP's ER was able to just hand lab results to me. This dept refused to give me a printout, BUT I was allowed to look at them and write them down off the computer screen. Then I said I really needed a printed copy too since they also were refusing to fax the results to anyone, so a phone call to medical records and a signed form later I got the printed copy. But even then the nurse wouldn't fax the labs over to Apria who was in need of them to update TPN right away if needed... instead the nurse showed me the unit's fax machine and had me dial the number. The absurdity of the matter didn't seem to faze her or the attending doctor (not Dr. Cahill)in the recovery area. So it goes so often at CHOP though... a frequent lack of logic when it comes to dealing with patients. Fortunately that does NOT seem to be a problem we incur at Children's Boston, which is another reason we continue to go there.

In our seven hours there, we ran into 8 people who remembered Peter from our seven month stay in CHOP. And we had two hellos passed on to us from people who heard Peter was in CHOP. Those who knew him before were all impressed with how far he has come along now. I told everyone I could about Omegaven. When we were in the ER three days before when the old PICC became dislodged, we saw two of Peter's residents who had cared for him during our seven month stay. They also were impressed with his growth, coloring, and general improvements. I hope that someone from CHOP can take the evidence that is seen with Peter and conclude that Omegaven is indeed worth using at CHOP too. It would be a logical (there's that word again) thing for CHOP to offer to parents for their children given all of the evidence out there, including the evidence of one of their former patients - Peter.