Second day at Riley

Broc woke up in a much better mood today. The team took away his isolation which gives us much more freedom. We can leave the floor and see things other than our 4 walls. We tookna short walk to see the dolphin show on the monitor then we bumped into Bailey at the RMD room. Broc was so happy to see Bailey. He really misses his buddy Mark when he is in the hospital so being able to see any other kiddos is such a treat for him.

We had a mishap last night where his night nurse forgot to close his medport on his g tube. Even though he had his g tube hooked up to a drain bag over night it all drained out of his med port. Poor boy woke up soaked in stomach contents and bile. It was disgusting. He got a bath very quickly and we changed all his linens. We are a little concerned about him getting an enteric infection but hoping that the iv antibiotics that he is on will cover him for anything.

He will be having his surgery tom as soon as they can fit him on the schedule. Once he recovers from that we are hoping to leave as all cultures are still negative but we know we cannot leave until they are finalized at 48 hours.

Thank you to the friends that have come to see us. Thank you for all the love,prayers and support. I will update tom about surgery time and how it went.

Back at Riley

Broc's central line site was looking pretty angry since Tuesday night. I was in contact with his team and they said to watch it. By Friday morning it wasn't looking any better but not any worse. Since Broc is due to have surgery in 2 weeks everyone wanted it cultured and blood cultures taken too. While the nurse was culturing his site Friday morning it started oozing which is never a good thing. Dr Moustafa was going to admit us locally for iv antibiotics but unfortunately Broc's gj tube broke late Friday afternoon so we all decided it was best to head down to Riley.

Once I got everyone's bags and meds packed Broc and I headed down to Indy. We arrived around midnight. His team decided to draw cultures again and admit us. We got to the room around 5 am. Needless to say I'm exhausted. Surviving on 1 hour of sleep is a lot of fun with a child who doesn't want to be here. Broc is done with hospitals. Unfortunately there will be many more admits in his life time. Please pray for him to have a calm heart.

The plan is to do surgery on Monday to replace his gj tube and stay on iv antibiotics until 48 hours if his cultures are negative. Praying they are not positive otherwise that will be a whole new ball game.

I'm going to snuggle my boy and try and keep him calm. Thank you for all the love,support and prayers. Thank you to all the friends that are helping with Lil Mark.