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
  

Broc is getting tired.....

About a week after Broc's surgery he was getting really tired and having no energy.We thought it was just him recovering from being in 2 hospitals and putting his body through all that stress. So we thought nothing of it but as a mom I had an inclination something was up as the dr said that he should be fine with in a few days. So I called the card and he said it has nothing to do with his heart as he just had the surgery and it should be fine.

So we accepted that as the dr should be right and we didn't want to question him.On Thursday I took the boys to the mall as they wanted to play at the play -place there.Broc started out fine and then about after running and playing for about 5-10 min came back and said that he was so tired he had to rest.So he sits down for a while and then goes back.That happened 4 times so I decided that he was getting really tired and we left. I called the card back again and told him what happened and he said that maybe he had a low blood count due to the surgery and to call the ped to have it checked out.

To us as parents that did seem reasonable that his iron count could be low.So Sat we had a full blood count done as well as a Thyroid test.The thyroid test was fine and the blood count showed that he was a little anemic but not enough to require meds.

Monday he was running with his around the house and had many tired spells as we call them.The same happened Tues and Wed. Wednesday I called the ped to see if I could talk to him about my concerns.He only called back later that evening and said that cause of him just having surgery he should not be acting that way and also that since he never had tired spells before the surgery then this was something new and had to be addressed. I asked him if a 3 year old could know when they were out of breathe and not act out.He said that 3 year olds will never stop for no reason as we all know.As we know we had to restrict all activity before his surgery and it was really difficult to do.The ped says to call the card first thing in the morning.

Thursday morning I call the card and leave a message and tell him that the ped said to come in.He asked what had been happening and I told him that we did the blood tests and they were fine.I told him about the spells too and he said come in right away.So I picked Broc up out of bed in his pj's and all and off we went.In the meantime Broc had spiked a fever of 103F 2am that morning so he was so hot with fever too.When we walked in everyone could see that he was not the bouncy little boy that was there a month ago.The card came in and checked him over.He did say that his murmur was louder than the last time he saw him but that could also be because of the high fever he was having.Anyway he said that besides the fact that he did not look well he could feel all his pulses and that was a good sign but didn't like the fact that he was getting out of breathe when he was really active.So we go into the tech's room and she does the ultra sound.Broc is so sick he is not even interested in the DVD that is playing.He was very sleepy during the echo.After the echo the card comes back in to tell me that we are dealing with 2 separate things.

First he says that he is clearly ill and needs to see the ped asap to find the source of the fever as it is putting strain on his heart.Second he says that his pressures are back up to 50 for mean gradient and 100 for the peak.Those are a little higher than before he had his surgery.So clearly the surgery didn't work for him.He said that he either needs a more aggressive cardiac cath or we are looking at open heart surgery to either repair the Aortic valve depending on what it looks like or maybe even replace it.

Well, with that news I was sort of prepared for something like that as I knew something had been going on.I think as a mom when you have a hunch that something is not right you kind of prepare yourself for the worst but we were hoping that his heart was fine and that it was just going to be a re-assurance that the surgery worked and his tiredness was related to his sleep-apnea from the tonsils and adenoids.

As we left the office he was talking to the surgeons and drs at Riley hospital to let them know his findings and what the next plan of action will be.

For now we are waiting to see what will happen.

As for the fever , when I got home from the card Mark was telling me that his neck hurts him and I felt his head and he was burning up.So I ended up taking both boys to the ped.He checked them out and said that they both have strep throat.That is number 8 strep for Broc this year.

I thanked him so much for listening to me and being so pro-active with Broc.He did say as well as the card that if we had left Broc and not checked his heart he would be in heart failure in a weeks time.Especially if we had not shut down his activity levels.They said that he could have been playing really hard or running really fast and his heart would have given out.It is a really thought to think of but it's reality.

So once again we are house bound until Broc has his next surgery so as to keep him as well as we can.Both of the boys are on antibiotics.

We thank you all once again for all the prayers and e-mails that you have sent us.Although we may not reply we do read every single one of them.They are really encouraging to us.