04/16/14

So.....this weekend we realized how fragile our little peanut is. She had a very rough weekend. This is what happened....she got her trach. Apparently there was bacteria in the ET tube. The trach surgery kind of shook that up. Her liver is not functioning right and one of the jobs of the liver is to filter out toxins and bacteria. Her liver couldn't filter out the bacteria and she became septic. She ended up on 2 "big gun antibiotics", fentanyl drip, a paralytic, dopamine, and epinephrine. As of today, her tracheal aspirate is no longer growing anything, so infection is under control. She is off the paralytic as of this morning. They are weaning the bp meds. As of this afternoon, she is off dopamine. She is on the evil TPN. But, it supposedly does not contain all of the toxic substances that initially hurt her liver. They hope to slowly reintroduce feeds tomorrow.

Now, onto our next plan. Her liver is terrible. I have been researching a little drug called omegaven. It is an intravenous omega-3 fish oil. Dr. Puder at Boston Children's Hospital, along with a pharmacist there, have been giving sick kids like Molly omegaven for years. It is not fda-approved so you cannot get it everywhere. I actually talked to Dr. Puder on the phone Sunday. He says she is a candidate for omegaven. He said the doctors at dallas children's can get it for Molly but they usually just don't want to pay for it. He said we can either go to Boston or Texas Children's as they give it too. Of course, Boston is the top notch of childrens hospitals. Anyway, one of Molly's pedi G.I. doctors is trying to get it for Molly. We'll see how that goes and go from there. By the way, omegaven reverses the liver damage caused by the TPN. Even kids with cirrhosis were successfully treated.

Now onto plan #2. Molly may have to get a liver transplant some time in the future. They said she would not be on the top of the list, which is good in a way. It means she doesn't need it right away.

So, that is where we are right now. Of course as always we need so many prayers. Prayers that she fights this infection, that we are able to get omegaven, that her liver starts to heal itself.

Pictures are from Molly being paralyzed (the one with the bow), and Molly's first Easter basket.

P.S. Molly had her first trach change today. Tim and I have our first trach class on Friday. We get to start learning all about her trach.