Peter's Progess: outside videos

Sunday, July 20, 2008

outside videos

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Finding Omegaven

Omegaven is the lipid that saved my son from TPN-induced liver failure. I am posting links for anyone trying to obtain Omegaven or find out more about it. Dr. Mark Puder at Children's Hospital Boston is a contact you want to remember if all else fails while you look into getting this lipid for your child's TPN. Here are the links I have found thus far:

http://grey.colorado.edu/shortgut/index.php/Omegaven#Omegaven
Good site for short-gut as well as anyone on TPN therapy, also has good info about Omegaven and kids' success stories

http://oley.org/documents/How_Physicians_Can_Obtain_Omegaven.pdf
How your doctor can obtain Omegaven

http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel222.html
Info about the first child who was put on Omegaven and Dr. Mark Puder

http://eleanorbrogan.blogspot.com/2009/01/omegaven-welcome.html
Info on Omegaven, a success-story herself, and has links to MANY other children with short-gut... see the links for all of this on right-hand side of her blog page

Peter's history - condensed version

In March 2006, at four months of age, Peter began to stop gaining weight and was found to be quite anemic. This led to a lengthy period of testing at Children's Hospital of Philadelphia, many frustrating moments in the hospital, and ultimately the discovery of a vein and artery communication, called an arteriovenous malformation (AVM).

This AVM was in Peter's liver and was originally thought to be reparable through embolization, a non-surgical procedure via catheter in the femoral vein, at some point when Peter grew bigger with the help of TPN. Peter did begin to gain some weight on TPN, but also began to vomit blood and bile, developed high fevers and a white count of 120,000. None of the medical authorities caring for Peter believed that the AVM could be responsible for all of this until test after test came back negative for anything else. We had at this point come across the words "mesenteric ischemia" from two vascular surgeons, who said that it was possible the AVM was causing pain, but the elevated white count was still unexplained. We begged then that the AVM be removed, as Peter was obviously in pain, and we could try to decipher the white count later if it still remained elevated.

The day finally came for the AVM to be embolized and it was discovered that it was necessary to be removed surgically after all, due to its complex connections and size. Upon that surgery it was noted that the bowel was dusky and had two punctures in it, and that the gallbladder was necrotic (dead tissue). The punctures were dead areas of bowel that had occurred due to the AVM diverting blood away from areas of the bowel. The necrotic gallbladder occurreed from this diversion of blood as well. The dead tissue and the bowel perforations releasing gut bacteria into the abdomen would explain the white count of 120,000!

Three days later Peter went down for more bowel surgery as his fevers returned and white count began to rise again. Peter came out of this surgery with his duodenum cut in half and to drainage, an ileostomy, and a G-tube. Dr. Flake, the surgeon who had been called upon now twice to save Peter's bowel, did this to try to salvage his bowel from the multiple intestinal punctures that he could now see during that surgery, which had also occurred from the lack of blood supply caused by the original AVM.

A week later, Peter developed abdominal compression syndrome from all of the bowel swelling and had to have his abdomen opened and left open to relieve the pressure so the kidneys would not stop working. Peter's abdomen never could be closed back up, so he had to heal it with scar tissue, taking months to close.

Meanwhile, Peter developed another AVM, which apparently isn't all that uncommon when an AVM is removed and the blood circulates through channels that may have been closed or receiving less flow. No one caught that AVM. It ultimately closed on its own but left a clot in the portal vein of the liver, adding to the portal hypertension Peter already had. Portal hypertension can make a person prone to bleeding in the bowel, as can liver disease itself. Peter bled huge amounts and at one point was receiving transfusions every few days.

Peter had numerous infections throughout his stay, to the point that Infectious Disease raised his temperature threshold for cultures just so we could stop the on/off antibiotic routine that goes with culturing in the hospital. Also during his stay, he also develped a fistula (hole) in the bowel going straight out of the scar tissue that he grew over the abdominal opening that had been created months ago to relieve the compression syndrome. An additional insult was that Peter's bones became so osteopenic from the TPN and bedrest (Peter had been in the ICU since the beginning of June 2006), that he had a hairline fracture on his right femur. You can see the splint on his leg in one of the photos.

I was told that Peter would need a liver transplant as the TPN was destroying what was left of his liver, and maybe an intestinal transplant as well. Fortunately, my father found an article in the Wall Street Journal just before Thanksgiving, telling us about Dr. Puder (in Children's Hospital Boston) and Omegaven. Children's Hospital Boston (CHB) also has the capability of doing multivisceral transplants, so we were to be evaluated for that as well. We transferred up to CHB very shortly after hearing about Omegaven. Philadelphia was not interested in using it. I was given a hospice brochure the day before we left the ICU to go up to Boston, the ICU where Peter had been for 6 months, as so few people believed that Omegaven could do what it was credited.

At the end of two weeks on Omegaven and in the constant care of Dr. Kim (transplant surgeon), Dr. Kamin (GI doctor), and Dr. Puder (Omegaven researcher and surgeon), Peter was off the ICU and on a regular surgical floor, and within two and a half months of being on Omegaven came home. He remains home now as we wait to see if he pulls out of the liver injury and bowel injury enough to avoid transplant. He remains still in the care of Dr. Kim, Dr. Kamin, and Dr. Puder, those very same doctors who greeted us when we arrived at Children's Boston.

Sunday, July 20, 2008

outside videos

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