A busy week

On Monday Broc and I spent 4 hours yes you read that right 4 hours at Dr Harris's office. we spoke about everything that Broc has been through since we saw him last which was the end of 2012. We also went through his diary and all the viruses and fevers that he has had too and the impact that these have on him. Not only does he deal with the fevers with these viruses but he also deals with gut shutdowns, crazy sensory issues which impact his schooling,his balance is also thrown off too which causes him to fall and bump into things.

Dr Harris decided to draw all his immune labs again and some others. We are hoping that one of these labs come back low so that insurance will finally help cover the treatment that we have been trying to get for him.It is really sad to hope that your child has a disease or something wrong in order to get the help you need. In 2011 we tried to get him a trial of treatment but ins denied coverage. One treatment alone will cost about $1000.00 that excludes all the monitoring that Broc will need during the treatment. He will have to be monitored in the hospital in case he were to have any reactions to the treatment. We don't know for sure that it will work, but if we don't try it we will never know.

He also has some other "out of the box" treatments in mind too. Some of the labs are not back yet so hopefully we should hear something next week.He also checked for Broc for any food allergies just to rule them out. It was not a very comfortable test but he did really well and tested neg for all of the food allergies.

On Wed Broc and I took a trip down to Riley. It was a very early morning. We left at 3.30 but that meant that we were home early enough to get Mark from school and he wouldn't have to ride the bus home. He really doesn't like it but will do it on days that I cannot get home early enough to get him. We had our lovely tech Nancy do Brocs echo. Mark and I will never forget her. She was the first person to take the time and explain everything on the monitor to us. She explained that if we see lots of colors like on a storm weather doppler then its bad. That was way back when Broc was only 8 weeks old and he was just dxed. That is a day that Mark and I will never forget. She was so happy to see Broc and how well he "looks". She did a fantastic job with his echo and got all the pics that she needed. She was also very interested in all that Broc has been through since we last saw her which was in 2010 when Broc has his OHS for his Aortic Valve repair.


Before her we went and had an EKG done too. Broc was able to pick out 2 prizes from the treasure box. He always picks one for his Buddy so he doesn't feel left out. I love the way they look out for each other. Then off to see Dr Hoyer. We caught him up to speed with everything that Broc has been through and dealt with. Also all the different surgeries and procedures that he has been through. We also discussed how we saw cardiology at Cincy and the not so great experience we had. He was great about that and said lets just forget you ever went there. Totally agree.

Onto Brocs heart. He feels that Dr Capannari is doing a great job of taking care of Brocs heart. He said that everything Dr C saw was what he saw on the echo. He did put Broc on a low dose heart med to help his heart along and prolong the time before his next OHS to replace his Aortic Valve. He said we could be looking at the next 3-4 years maybe a year or too longer if the meds help.
Initially we were hoping that Broc would be in his teens around 15-18yrs to have this surgery but its not looking that way.
We discussed all the different options that we have. Bovine,cadava,mechanical valves and also discussed the ROSS procedure as an option too. With all the rejection issues Broc has been dealing with from his bypass and now brain surgery this could be very tricky. It is imperative for us to find the source of the rejection and see if there is anything we can do to prevent it the next time. Rejecting a heart valve would not make for a very happy heart and a very sick little boy.
He also felt it best that since Broc is dealing with many other medical issues too he should see him too. So next year we will see Dr Capannari and then the following year we will see Dr Hoyer.
He did say the regurgitation is moderate to severe as well as some back flow over the aortic arch.

So now we have the rejection issue of his brain sorted for now as well as the cardiac clearance. I called CVC yesterday and they should be receiving all of Brocs heart info so that they can start scheduling his CTA.

For now he has had 2 weeks of low eos levels so we are thinking that we are done with this chapter for now. Broc has not been cleared for gym,recess etc yet. He will be cleared for school this afternoon. We have a very happy little boy who cannot wait to go back to school on Monday and one very happy Big brother who cannot wait to ride the bus with his brother again. Next week will be a short week for Broc as he will have school Monday and Tuesday and then Wed he has another app at Riley to see another immunologist.(Dr Boaz is hoping that he will be able to figure out the eos number issue.) Then Thurs and Fri are Fall Break. I think it will be a great way for him to start.

Thank you everyone for all your love and support