Day 1 at Riley

Broc and I came down to Riley yesterday as he still wasn't tolerating any feeds and had been on iv fkuuds since Wed. He really needed to be on TPN and no one near to home was able to help us.
I called the on call GI and explained what we have been dealing with. She said she would let the ER know we are coming down. We arrived here and then went straight Back to a room. Blood cultures were taken from his picc line and his arm. We finally got to our room around 1:30am. We saw lots of Drs and nurses and I answered lots of questions.

We finally got to sleep around 3:30am. At rounds this morning we had a great team discussion. The Gi Drs in charge listened to Brocs entire history and were very impressed with meds and testing we have done. They all agreed that we have reached the end of the road for treatment for Broc. There is one other medication we could try but it could effect his heart adversely which Broc does not need.

The plan is to start TPN today and figure out a stood schedule for him. This could take a number of days to work out all the kinks. Brocs body is not able to digest the amount of formula that we were giving him. So we will give him a very little bit of formula through his j tube and make up the rest of his calories with the TPN.

Broc has also started ABX due to the fever ,low blood pressures and nuetropenia. This is just to cover him until they blood cultures have come back. Unfortunately having TPN hooked can increase his risk of a line infection but we know that he needs to the TPN to keep him alive. It is a very delicate situation. If Broc were to get a fever we would have to drive straight to the hospital and he will be admitted for ABX until his blood cultures have come back negative.

For now we sit tight and enjoy our stay. We have already had a few of our "Indy family" visit us. His blood pressure has stabilized since getting a bolus of iv fluids ontop of the iv fluids he has running.

Thank you for all the love ,prayers and support. If you can offer any help with Mark please let Daddy Mark know. We have someone to get Mark off the bus until Friday. We do not have anyone from Tuesday till Friday morning. If you can help please let us know.