ADSC Clinic Trip Day 3

We were up bright and early again. Broc was not a happy man as he was once again starving. Being NPO is not his favorite thing to do.

We checked him into surgery and there him and I waited till he went back. Mark and daddy went off to the GI clinic to do a test that we had scheduled for Mark. It was so nice of them to let us take care of both boys at the same time. It also gave Lil Mark a break from the surgery clinic for a while.

I went back with Broc and put him to sleep. I love that I am able to do that with him. He was so peaceful sleeping there. I also got to meet Dr Wood and Dr Putnam before hand and ask any last minute questions we had.

We passed the time by running down to get some breakfast/lunch as we were also starving. We never eat on days that Broc has to be NPO. When he tells us that he is starving we can say so are we. He always thanks us for not eating with him. He's so sweet.

Anyway an our passed and we were called back for our consult with all the Drs. GI came in and said that everything looked great from his point of view. He did take lots of biopsies and we will wait for those results.
Pulm came in and said that he found a lot of mucus in his lungs which he didn't like and took samples of that to make sure nothing was living in that mucus but said his lungs looked otherwise good.
ENT then came in and dropped a bombshell. They found a laryngeal cleft in Brocs esophagus. They said that there are 2 ways of fixing it either fat injections to build up the ditch again or surgery to close it so that nothing can get stuck there anymore. Its kind of like a ditch or pouch where food and liquid can get stuck. They are not for certain that that is causing some of his reflux issues but it very well can be.

Once Buddy was all done I was called back to see him. Man could I hear him. He was MAD!!!! Poor guy had an impedance probe down his nose into his stomach to measure his reflux episodes. He was screaming so loud and being so obnoxious I was so embarrassed but they assured me that all the kids that have this done are like this. Then to top it off they came back and said that after looking at the x ray the tube needed to be in a little further to work properly so they had to hold him down and push it in further. That just made him MADDER!!!!

We finally got him calmed down and moved into his room for the night. Daddy and Mark met us there too and once he saw his brother he was much happier. Lil Mark hopped onto his Buddies bed and they played games together. We ordered dinner for everyone and after that daddy and Mark left to go to the RMD House and Broc and I settled in for the night.

We had him eat as much as he could with a tube down his throat as we knew he had to be NPO for the next morning. Again not a happy man about that either.

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!!