Monday, June 8, 2009


Let me continue the details of Aidyn's journey. When we did research on Omegaven we were very excited and relieved. We were determined to get Aidyn this experimental treatment. We told the nurses and doctors about it at Banner Desert. All but one had not heard of it. In fact, Aidyn’s main neonatal doctor had seen it used in a hospital in New York, so he mentioned it to the pediatric gastroenterologist. She looked into what it would take to get Omegaven to the hospital for Aidyn and also left a message with Dr. Puder of Children’s Hospital Boston to see if we could have the treatment remotely. She also left a message at Seattle’s Children’s Hospital and UCLA. The only message returned was from Dr. Puder from Children’s Hospital Boston. In a detailed email, he said he could treat Aidyn in Boston, get housing and the Omegaven would be paid for by the hospital if the insurance didn’t cover it. While waiting to hear back from the other hospitals, somehow the Peds G.I. thought we weren’t sure what we wanted to do. We found that out when Joey started making calls on his own to different hospitals. We were very disappointed and angry that this message was somehow portrayed. Joey left a message with Dr. Puder and received a call back from him. Dr. Puder was so easy to talk to and very personable. The doctor had his team make the necessary contacts for our insurance and details for Aidyn’s admission into Children’s Hospital Boston. We were in good hands.

Meanwhile, the hospital Aidyn was currently in seemed quick to have Aidyn discharged…we were not very comfortable with the hasty preparations. We had no training in the hospital to take care of Aidyn’s TPN and pumps. I had two days to learn how to inject Aidyn with Lovenox, something that is done twice a day. We honestly thought the hospital was going to keep him a little longer to observe the clot Aidyn had. Plus, we were not prepared at home. Aidyn was discharged from the NICU and hospital on May 19th, weighing 6 lbs 2.79 oz. Let me add that when Aidyn was discharged, he was taken off his TPN for 2 hours. He had never been off of it during the hospital. I find that a dangerous thing to do, he could have had a terrible low blood sugar issue.After a couple of days being home from the hospital, Dr, Puder had called to say he wanted Aidyn admitted to Children’s Hospital on the following Monday. We were very excited. We somehow managed to get plane tickets and a hotel for Sunday, May 24th. We did have a scary moment on the way to the airport. As we pulled down our street, I noticed blood coming through Aidyn’s IV lines. We hurried back at the house, called the home health nurse (who had been on the phone on and off with us for over 24 hours, due to pump problems) and in a panic changed his tubes out. The nurse arrived and changed his central line cap. We feared this would happen during our flight, thank God it didn’t, at least not until we got to our hotel room. I changed everything out again and hoped we would have an uneventful night. The next day, Aidyn was admitted into Children’s Hospital Boston for treatment. We were so relieved. Aidyn's doing well, by the way.

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