Update on Broc

Sorry its been so long again since I have updated. Once we came home from our stay in Dec I got really sick and was down for a couple days and then the virus proceeded to invade everyone else at home.

We knew we had to keep Broc as healthy as possible so that we could take him back to Riley healthy. Nothing worse than going back to the hospital and still being ill. I wasn't feeling that best but I was able to rest a little while we were there. Broc went back to Riley for a 3 day VEEG. He was being monitored via leads on his head as well as via a video monitor that was in the room.

He was not a fan of the hooking up process as the glue smells so bad it made him almost vomit so we had to medicate him for them to be able to glue the leads on his head. Everyone still had to wear gowns,gloves and masks when they came in his room because he hadn't been cleared for the 2 viruses that he had in Dec.

We tried to make his stay as fun as possible. He got some legos and puzzles from the people at Child Life and he was able to serenade the whole of Riley hospital over the phone when he called in to request a song. He sang "Fight Song".

Once we were done we went to the hematology clinic for an iron infusion for Broc. He did really well with his infusion besides a small fever.

Broc was not feeling very well GI wise and his j line was backing up into his g so IR was paged and we were sent down to IR for them to have a look at his tubes. Thankfully both his tubes were not twisted or kinked, His system was just so slow that his motility was very bad. We came home and stopped all his feeds for 24 hours to give him a break. His GI also discontinued a lot of his medications that were not vital for him until we met with the motility clinic.

Unfortunately Brocs gj tube site was starting to hurt him and by Sunday it was inflamed,red and extremely painful. I spent Sunday texting pics to his Drs and we started a topical antibiotic cream. On Monday we went for labs as usual and it showed that Broc was fighting an infection. We took him that evening to the ped and had his site cultured. The culture came back with 2 rare bacteria. Thankfully his ped decided to start him on a strong antibiotic that evening to cover him for what he thought it was, MRSA.

This past week my dad and I took another trip down to Riley to have another iron infusion and see the motility clinic. We spent the night at Patrick and Aqua's house. Thanks guys for your great hospitality. We had a blast!!!

Brocs iron infusion went off with out a hitch. Having an iron infusion with Grandad is always fun when you are watching "Cars 2".

While we were having Brocs infusion they found out that his red lumen was not drawing back blood so TPA was ordered and given. We were told to come back after our motility appointment to have the TPA taken out and flushed. Once we were done we went to eat lunch in the cafeteria. We had about an hour to eat lunch.

We arrived early to the motility clinic appointment so we had more time to spare. Once Dr Croffie walked into the room Broc was surprisingly quiet. He did have my phone to keep him occupied too.
Dr Croffie went through Brocs entire history and read all the notes from his various drs and specialists. He asked a lot of questions and we learnt a lot. The decision was made to have motility testing done which will give us a lot more answers.Testing will be done in March sometime. We will have a lot of decisions to make once we have all the results from the testing. The testing will require Broc to been under anesthesia twice.

Broc sitting under his favorite animals.

Thank you for all the love,support and prayers.