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.

Another virus......

So Broc has not really had a break with being ill.Last week he had a small tummy bug ,then last Monday he had strep and now this Monday wakes with a fever of close to 104F.This is crazy.He was so lethargic so we took him to the ped and then for blood work.His WBC was low and so were a few other numbers.Fortunately his ANC level was higher than 1000.

Fast forward to today his fever is still up and down with Mortin.He is still lying around and not eating much.I took him for another blood draw this evening to see how his counts are doing.OH MY WORD.....
His WBC is lower and so is his RBC,Hgb,Hct. Now his ANC level is 490 something.

I called the ped and he said this is serious again.NO kidding. He thinks he may have the Parvo virus B19 again??? I really hope Dr Nelson has some good answers tom otherwise some sparks are seriously going to fly.

Our Buddy seriously needs a break.He has missed almost a whole month of pre-school if you add up all the days he has missed.He only started in the middle of December. He needs to be heatlhy with a good blood count for his major vascular surgery coming up in June.

As parents , we are seriously frustrated that Broc has to go through all these illnesses,blood draws,hospital stays,time away from his brother etc.That is not the life of a 4 year old.

We had never heard of Pravo virus until he tested positive for it last year and now they think he has it again.It is truly crazy , madeness.

I will update tom once we see Dr Nelson. We pray that he has some answers or solutions for us.If not we are thinking of taking Broc out of State to find help for him.


We thank you for all your prayers and words of comfort.

Not what we were expecting!!

A lot has happened since I last wrote. Broc has continued to have fevers and sore throat.His ped did not treat him this time round with antibiotics as they are really messing with his tummy and really don't seem to be working.
This past time it took a while to get over the infection but he finally did.He still continues to have tummy pain,fevers daily and only eats a little at a time.

He is also starting to tire more easily again and getting full after eating only 2 or 3 bites.He will play hard or be running for a few minutes and after 5-10 minutes he is exhausted.It is worrying me a little as those were signs that he was showing the last time his heart needed a repair.The slow on eating, getting tired easily etc. I will be watching him for a little while longer to see how he does.

Onto the BIG things.
We saw the Head of Immunology on Wed.He seemed like a very cold person at first but after a few minutes he started playing basketball in his office with Broc.He asked for his whole history not the paper version but the parent version as he calls it.He then looked over a few of his labs that he had done previously.He was very curious about the EBV infections that Broc has had in the past and of course the recurrent strep infections that he has had too.He also redid some of the labs that were borderline or low to have them tested by his lab in New York.
He ordered a ton of blood for testing that will be sent to New York and will be back in 3 weeks time.

What fun we get to make the trip again in 3 weeks.
Then off to MRI - Let me back up.Broc had a CT for his sinuses in Nov '11.When I saw the report there were a few findings that I thought were odd.Needless to say I sent the report immediately to his ped to see what he thought of it.
He was horrified that these findings were not looked into sooner, so he ordered the MRI while we were there.
The ped called last night to say that the original findings of moderate ventricularmegaly was found as well as mild to moderate loss of white matter in the brain.
This is very shocking to us all as we never expected to find anything else was wrong.
There could be a number of reasons for this: it could be part of his chromo disorder,it could be progressive and therefore get worse as he gets older or it could be serious and need treatment right away.

The Nuerologist at Riley is going to look at his MRI this weekend and see if its urgent or if we can wait for a later consultation.

So as usual its wait and be patient.

We did have fun last weekend and take the boys to the Monster Jam in Indy as well as the Childrens Museum.They love that place especially the Egypt exhibit.

I will be updating as soon as get any results.

Hope you enjoyed all the pics.We even stuck one in of Brittany and our dear grandson Bentlley.He is getting so big.

Please keep our family both here and in South Africa in your thoughts and prayers as we are dealing with a lot of things.Thank you for your support.