Cardiology and Immunology

I am sure you are all anxious for an update on how the past couple days have been so here it is.

We saw cardiology yesterday for Brocs anual checkup.We had it bumped up a little as he was showing some signs of fatigue and not been able to walk short distances without saying something.

Over all Dr C said that everything looked great.His numbers had not changed from last year June but he did say that his valve leakage from his Aortic Valve is now in the moderate range so it has got a little worse.He told us the serious signs to look for but hopes that we will catch it on echo before he would start to show the signs.

Eventually  we know that Broc will need his Aortic Valve repaired again or replaced. He does feel that his low endurance level is coming from his leg causing all the issues with not enough blood flow and that is causing him to be more fatigued. So we are hoping that once he has his ilio-femoral bypass surgery in June he should have more endurance and be able to run and play like his brother.We have been told that he will still have times that he will be tired and then we should let him rest. Dr C said that Broc knows his body very well and will be able to tell us when he needs to rest.

Broc is feeling much better and his fever has seemed to be gone.He is getting his energy back and went to school today.He wanted to go before Spring Break.

Now onto Immunology.At the beginning of the appointment we thought it was serious de ja vue as Dr N was saying the same old virus thing and that he will be fine. He then left the room to call Brocs ped and came back a changed man.I really believe that there was someone else helping us too as he knows the struggles we go through.

Dr N came back and went through all Brocs labs that he had done.He said that the EBV is no longer in his system which is great news.He also said that his immune antibody response is very good.That is the thing that puzzles him and many other Drs too.he has great repsonse but still gets sick all the time.He said that he has never seen anyone with such a high immune response but continues to get fevers with infections all the time. His is going to repeat his CBC next week to make sure that all his numbers have recovered.If they have not recovered then we will be looking at doing a bone marrow biopsy to see why they have not.So we are really hoping that his system bounce back to normal.

He also has never had a childs WBC and nuetrophil count drop that low everytime they have an infection.
We are not doing anymore antibiotics for Broc unless an actual bacteria is cultured as his risk of getting C-Diff again is extremely high and he is till suffering from the effects.It has given him irritable bowel syndrome which is causing him lots of pain when he eats and making him feel sick to his stomach a lot.He is taking pro-biotics for it.They said that his tummy will have to repare it self.

His genticist mentioned last week that there is a possibility of Broc having a mitochondrial disorder.Dr N is very interested in that and will be talking to Dr W the metabolic specialist to see if they can evaluate Broc.We also mentioned the MRI that he had done a few weeks ago and then he took off out of the room.He came back and said that the nuerologist is out of town and will be calling us when she gets back.He thinks that she will be a good Dr on Brocs care team as well.

BTW Dr S the nuerologist called me and wants to see us in 2 weeks.So we have another trip to make.

Dr N wants to follow Brocs fevers to see if there is a pattern to them so we are to take his temp in the morning and then again at 4pm in the afternoon.

The goodnews is that he will not need to have to wear a mask again unless we are in extremely crowded places such as assemeblies and conventions and maybe airtports too.We are so happy that everyone gets to see his precious face again.The mask was really not protecting him as he is still getting ill but in those places he said it will aid as a small protection.

So Broc is going to have a Care Team taking care of him which will consist of a Neurologist, Infectious Disease and Metabolic Specialist,Immunologist,Hematologist, and Geneticist.

I will have more updates once we see the Neurologist in 2 weeks.Till then thanks for supporting us n trying to help our little Buddy.