Dear Friends
Amanda continues the same. As of right now we are still showing no rejection which is great but she herself isn't able to enjoy this time because of all the nausea and vomiting. They have her on a new pain medication and that is working much better but they are not able to get rid of the vomiting. Tomorrow she will be having a test which is a delayed empting study. They know she is having severe reflux but this test will give them more information of the stomach functioning. The doctors now are in conference to decide if they are going to take Amanda back to the OR to do a Nissen wrap, a wrapping of the top of her stomach to prevent the vomiting and stop further damage to her esophagus and lungs. Her lung on the left side is still collapsed and now both have fluid and the more vomiting the more she continues to aspirate and can cause more damage.
Right now she trying but she is so fed up, she just wants to feel better and try to eat without being scared of feeling nauseated and end up vomiting. I have to push her to get motivated and walk or go to the play room but anytime she moves she vomits. The medicine does give her an hour window when she first gets it so that is when we get moving.
I have to say this has been a tough road but Monday my heart just about broke. Amanda for the first time saw her reflection in the mirror, she was in the bathroom and I didn't realize she really hasn't seen herself since before the transplant. All I heard was her crying. When we opened the door she was sobbing and couldn't catch her breath. At first I didn't know what was wrong and then she said "I can't believe that's me, my face is so big". She was very upset. My sister and I reassured her that it was temporary and it was the medicine and with time it will go down and get better. You are just not ready for moments like those. In the whole picture I know this will pass and get better but at that moment my heart was as shattered and broken as hers. She is definitely so brave and at the same time so fragile.
Tomorrow she also being scoped and from this Friday forward for the next 3 weeks is our window to watch carefully for rejection from the last OKT3. Well, we will continue tomorrow.
With All OUR LOVE
The Buddemeyer Family