Monday, July 28, 2014

Slight change in plans

Broc and I saw Dr Rouse Friday.What a lovely,kind older man. Like a Grandpa type. Broc loved him and so did I. Anyway he said he would look over all the notes we gave him and give us a call Monday. So we heard from Dr Rouse today.Him and Dr Boaz feel that it would be best to do the Chiari surgery first and then see if it makes any difference in his reflux and Gastroparesis issues. There is a possibility that it can help and it may not. The impedance probe study that Broc had in Cincy was really sad. It showed that he has many episodes of reflux all day and night and many of his episodes are lasting longer than 15 min. The acid is also pushing way up into his esophagus.The only good thing is that Broc clears the acid very quickly too once its over with so its not causing any damage to his esophagus yet. We are going to give it a chance cause then just maybe Broc wont need the other 2 surgeries. We have been told to give Broc a 4 week recovery period and if his reflux and gastroparesis symptoms have not improved then we will go ahead and do a gastric emptying study solid phase. Broc has only done a liquid phase as he was a baby and only drinking milk. If the gastric emptying study is positive then we will go ahead with the Nissen and Pyloroplasty surgery in 4 weeks.

Still waiting on a call from Dr Boaz or his nurse. Otherwise we will just speak with him day of surgery. He is a very highly respected Neurosurgeon and excellent in what he does.He also has wonderful bedside manner.Everyone has nothing but great things to say about him. If anyone would like to visit us the day of surgery it will be at Riley Childrens Hospital on Aug 13. Please feel free to message or email me and I will give you any extra details.

We also saw Neurology for Mark last week. Another great Dr. She really cares about his quality of life and how much he has missed out this Summer due to all his migraines. She has given him the same med I take for my heart but it helps in migraine patients too. So far it really seems to be helping. We are also focusing on what his triggers are and trying to avoid them at all costs.

We have our Regional Convention this weekend. We are really looking forward to all the encouragement and new faces that we will meet. The boys love the Dramas too. This year there will be an extra one so that is very exciting. We will also be tied in with other Regional Conventions as well as an International Convention. It will be the boys first International Convention experience. I always loved them as a child. Loved meeting all the foreign delegates. Although they wont personally get to meet any of them they will be able to see them via video screens. We will be posting many pics after the weekend so look out for those.

We thank you all for your continued love and support.

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