Life at home has been a mixed bag of emotions. Broc is still dealing with on and off joint pains, belly pains and low grade fevers. He continues to have his episodes which slow down his motility. His nausea and pain got to the point that his team had to lower his formula rate by 10mls which means that he has now lost his 4 hour free window. That window meant that he had no lines attached at all. He loved that time and longs for it back. I wish intestinal rehab came with a handbook but it doesn't. No one can say what life will be like when you get home and back to your "normal life".
I wish all the amazing pictures that they painted weren't told to Broc. Now he's mad that he can't have his free time. He doesn't understand that if we unhook him he wont get all the calories he needs. As parents did we know this could be a real possibility. That he wouldn't tolerate his formula at that rate. Absolutely!!! We used to live this life 6 years ago. Explaining that to Broc, a whole different story. With the way his brain thinks he doesn't understand. His brain thinks literally. It doesn't understand the consequences. That is how a person reasons and thinks with Aspergers.
We are still struggling to get enough fluids into him to keep him well hydrated. He doesn't ask for the liquid as he is mostly full so we are just giving him cups of gatorade to drink without him asking and he continues to sip on them slowly. We also cannot drain his Gtube like we used to otherwise he would loose the fluid he drinks. It's such a delicate balance.
We are still having to put pedialyte in him at night via his Gtube.
The fact that that we are now feeding him via his Jtube by no means says that he is cured or better. It just means that his colon has rested enough for now to accept tube feedings. He still only eats very little by mouth. He still has Mitochondrial Disease and all the other diagnosees he has. He is also still undiagnosed as we wait for a complete diagnosis from the Undiagnosed Disease Network. We are hoping to hear back from them by the Summer of this year.
Life is not the bed of roses many would think it is. He more tired as his body is using more energy to digest the formula. He is on medication every 4 hours to keep his belly pain at bay. Unfortunately dealing with pain and nausea on a daily basis makes for a pretty grumpy Broc some days.
We are hoping that we can reach a point where he is somewhat comfortable.
Thank you again for all the encouraging cards, messages, texts and prayers that our family has received. 🐸🐸🐸🐸
