Thursday January 11, 2018
Today we had the opportunity to meet with the gastroenterologist. She is an amazing doctor who has specialized and done her major research in this exact area of Dottie's needs. She studied with the the man who developed TPN (total parenteral nutrition) and her passion is keeping children alive using TPN.
After the first surgery we were under the impression that the only successful longterm outcome for Dottie would be an intestinal transplant in a couple of years, with the high likelihood of a liver transplant as well. Today we learned of another option for Dottie and we will do our best to share what we learned. Please remember as you read that we are not medically minded/educated so don't be too critical of our summary...
The goal will be for Dottie to live a healthy life on TPN while giving her intestine a chance to grow. When we are born we have about 200 cm of small intestine, but this grows as we grow and as adults our small intestines are as long as a tennis court. This means that Dottie still has the chance for her small intestine to grow naturally during her life. As her intestines grow her body will have an increased ability to absorb nutrition the way it was made to.
It will be important for the TPN to be monitored and for us to take very good care of her. Once the time comes that we can take Dottie home the GI team will meet about her weekly and will constantly be in contact with us about her needs. The main concern will be infection in her PICC line and this will be monitored continuously. She will also need to have care workers come to help with some of her care.
When can Dottie come home? We know this is your question because it is also ours. At this time there is no good answer. She needs to heal from surgery first and we don't know how long this will take. We don't know if other problems will arise or if this last surgery will all she needs. Seth told the GI doctor that we had heard anywhere from three weeks to a year before leaving the hospital, she agreed this was a fair timeline since we really have no idea of what's to come or how Dottie is going to heal. She said more than once that Dottie will be the one to dictate what happens and when. Depending on how she heals, how her body reacts to the TPN and feeding tubes, will determine what the GI team decides to do and how to move forward.
At this time our only focus is on Dottie healing from surgery. The surgeons and doctors in the NICU are her caregivers and are doing all they can to make her comfortable and get her through this. The GI doctor and her team won't be actively involved in her care until closer to the time she is able to go home. They are well aware of her and her health and are already thinking of her and talking about her but there is not much else they can do at this time.