ADSC Clinic Trip - Day 2

Today we were up bright and early. Broc was having a CT later in the morning so he had to be NPO from midnight. He was extremely unhappy at the fact that he couldn't eat at all. First thing of the day was Cardiology. He had an echo and EKG.

The clinic was running late so they sent us down to radiology for the CT Scan. We gave him some happy juice (versed) to help with his nerves a bit. Child life was there with her iPad and came oath Broc and I into the anesthesia room. Broc went off to sleep with me holding his hand and playing a game. It was so peaceful to see him lying there with his eyes closed.
While he was in CT we went off to get some lunch. We were starving as we never ate or drank anything in the morning so that he wouldn't be the only one. Lunch was yummy. He was done by the time we got back from lunch. I was called back to see him and he was up and about in about 10-15 min after I got there. Once we were all dressed and ready to go we headed back to cardiology for our clinic visit.
There we met a very nice cardi who was very friendly and loves to draw pics for the parents to understand what is going on. He informed us that Brocs leakage is still about the same as when we saw Dr C last year. He also said that Brocs mitral valve looks normal and that it's not parachute shaped like we have always been told. I asked him who we now believe and he said that it's a matter of opinion and it really doesn't matter until there is a functional problem with the valve so for the meantime we will just say it functional and leave it at that. He also spoke about Broc possibly starting some heart meds to help preserve the function of the left ventricle. He said that over time the leakage will get worse and it will weaken the left ventricle so to preserve it they give the kids meds to prolong surgical intervention. That will be something we will discuss with Dr C the next time we see him.

After cardiology Broc was beyond starving so we headed back down to the cafe to get him some chicken. Timing was very short but we made it in time for our next set of apps for the afternoon. First we saw the GI team. He was very soft spoken so it was really hard to rear him above the boys playing Dino's and sharks but we managed.
He said that it's really difficult to determine what is causing all the reflux issues because he has so many things it could be. It could be the new brain issue we found out about - Chiari 1 Malformation, gastroparesis ,constipation,or another issue. He said it's the chicken or the egg story.
He said we could discontinue the Zantac as it's really not helping Broc at all. Also to give the Prevacid about 20 min before meals as it needs time to get into his blood stream.
The topic of Nissen surgery came up again. He said that if we did the Nissen then it could cause his gastroparesis to get worse. So that would not be a good option for us. Once he gets a good look at Brocs insides tom and they finish all the other studies they will have a better plan for us.
Pulmonary then came in. Yes it was a loooong day. 11 hours in the hospital to be exact!!!
Dr Wood was wonderful. Very understanding and compassionate.
He listened to all of Brocs history and also explained the CT scan that he had done earlier in the day. He said that the scan was very reassuring that there were no major issues. He did note that he does have an artery that is lying across his trachea and causing it to squish flat when he breathes in and out. It gets flatter when he breathes out which causes some noisy breathing especially when he has a viral illness. It also causes the croup sounding cough he gets when he gets a viral upper resp infection too.
He explained everything that they will be doing tom and of course will know a lot more once they go in tom and get all the pathology results back from all the samples they take.
We hope to have a little more info from the procedures tom.

After our long day we came back to the house and let the boys play in the play ground.

We ate dinner in the dinning room and went down stairs to play some games in the arcade room. The boys fav place so far then went upstairs to bed. We have another very long day tom in the OR and then Broc will be having an impedance probe placed actually 2 while he is in the OR to monitor his reflux episodes so him and I will stay the night at the hospital for observation.

These 2 really love each other. Lil Mark protects his brother even in his sleep!!