Sunday, October 3, 2016

Rachel Nielsen and family appreciate all the love and prayers sent our way.  This has been a very stressful and tiring week spent at Primary Children’s Hospital. Rachel has had a hard time maintaining her weight over the last couple of months and has steadily been losing.  This became a big concern three weeks ago after three days of high IV steroids, which caused her heart rate to drop into the high 20s and low 30s. At this time there was talk of starting her on TPN and get her nutrition up. For 2 weeks, it went back and forth on how to do it, at home or at the hospital, and how much to supplement the J tube feeds.

Part of the problem was which hospital would take Rachel.  The two Chief Medical Officers got together and decided that she could go to either the U of U or Primary’s and she was admitted to Primary’s on Wednesday, Sept 28th because the U didn’t have any beds available. Things have gone fairly well while here. There have been a couple communication problems but those have been resolved. It has also been hard coming back to Primary’s because of all of the bad memories we have.

The doctors between the two hospitals have worked well together in taking care of Rachel. She started out the week on 1 liter of TPN and lipids, but is now down to 1/2 liter. She has not changed anything in the rate she is receiving food through her J tube, just the way the formula is mixed. She is tolerating the new mixture well and has gained a few pounds. The thought is of her going home with the need for TPN being only a couple days a week.  She looks a little better and has a little more energy. She is still nauseous and still vomits up feeds sometimes, but that is due to the lack of motility in her intestines; her enteric neuropathy.

We are waiting to hear back from Wisconsin on the muscle biopsy results. We have also met two wonderful people from the UDN, Undiagnosed Disease Network, out of Maryland.  Paul Mazur and Kim Splinter are wonderful amazing people and have dedicated their lives to helping people from around the world find doctors who can help them. They listened to Rachel and her concerns and are going back home to try and find a way to help her. Thank you Gina Szajnuk for all you do for the RARE community.

Love, Kate