Jeremy and I needed time to talk, process things and talk with Brayden's doctors. Then we emailed the family. Now we post the letter we sent to our family:
A little update on the big guy.
Which leads me to be the deeper stuff. Jeremy and I needed some time to process a lot of information that was given to us during Brayden's last hospital stay. And I talked with Brayden's pediatrician yesterday for quite a while. His pediatrician has been a close confidant throughout Brayden's life. She helps us make sense of the specialists information.
Brayden's electrolyte game is crucial to his care and life. We need to keep his electrolytes balanced and in a normal range. The doctors help us with the correct food/water/supplements that he needs and monitor how his body processes it all. We are just now starting to understand (or not understand, some days) Brayden's troubles with his electrolytes. Brayden's GI system has seen quite a demise over his lifetime. First a g-tube, to a g-j tube, then g-tube and a j-tube, malabsorption, motility issues, ileostomy, etc. We have had an all access pass to Brayden's GI system. The current problem is his electrolytes and his body trying to properly use what we are giving him. If we are not able to keep his electrolytes in a good place, Brayden would more than likely be put on TPN (IV nutrition) instead of being tube fed. To be on TPN, and there is no way to softly land this info, would be the beginning of the end. Brayden's body would not last long on TPN. Naïve or not, Jeremy and I are still under the impression that we still have time to understand his electrolytes, especially since they are monitoring him closely and he could be fine for quite a while. But if not, then we face some tough decisions.
We all know Brayden's brain is very abnormal, every part of his brain has some sort of abnormality. As he has grown, his brain continues to compensate and work at the best of its ability. Brayden is fully in puberty, which can do some pretty wacky things to the brain (just ask any parent of a teenager). Brayden's brain, with puberty, can be sending some wacky and potentially not so good signals...puberty may not be the best thing for his health. They cannot tell us exactly what it may do but to expect something that may be small or big.
Brayden's body is not functioning properly on an electrical level (his brain) and now on the chemical level (electrolytes). During the last few days at the hospital, doctors from the Care and Palliative team came to talk with us. Lovely doctors but trust me when I say that they are not really the doctors you want to see. And with each hospital stay from here on out, they will be popping in. They wanted us to understand the path that Brayden's body has been on and where seems to be heading (which could be years from now or much sooner). They discussed with Jeremy and I separately and also together (I was conferenced in from home). The doctors encouraged us to think about how much we were willing to do for/to Brayden; think about when the bad days start out weighing the good days; when has his body had just too much; what plan of care we would prefer (if we were faced with a choice).
We are not sending this email out to sound the alarms bells but to ask for deep prayer. With each blood test from here on out, we will be holding out breath, waiting for good results. The core group of Brayden's doctors have been with Brayden since the beginning of his life, I trust them and will continue to look to them for understanding and guidance as we care for Brayden. But his body needs to be covered with prayer. The info sounds scary and quite overwhelming but as I sit here typing Brayden is happy shouting at the Mickey Mouse show, kicking his legs and looking quite comfortable. He keeps us on our toes and has already exceeded most doctors' expectations for his life.