On steroids again....

Yesterday Broc and I went to see Dr Walsh. It was a great appointment. A lot of my questions were answered and we discussed how we could best help Broc. We know that we will never find a cure for everything that he has wrong with him.Nor will we be able to find answers for everything either. So our best plan is to fix things we can fix and provide with the best support and services that we can provide him with.

Dr Walsh is going to give us a letter to give to the school. Stating some more of the services and different things Broc would benefit from to help him to better. We are trying to make school as enjoyable for Broc as possible. He does fatigue very easily. Although if you saw him it looks like he never runs out of energy. But he does. He cannot write for long periods of time. Just holding his head up and looking up and down at the board is tiring for him. Sitting on a chair is tiring for him. He has to hold his head up, hold his pencil, focus his eyes on the board and then back on his paper. His eyes loose track so then he has to start all over again and by the time he is done he is totally lost and very far behind the rest of the class. This is totally frustrating for him. One thing we have been doing at home is having him write on a slant board. It seems to be helping the fatigue on his hands and also his head is not totally looking down.

Dr Walsh also answered my question about a muscle biopsy. He said that anyone with a chromosome anomaly will have a muscle biopsy positive for mitochondrial issues. There is no need for us to put Broc through this surgery. It would be painful for him and not worth the results we would get which would not be conclusive anyway.

Broc has a lot of things going on. He has the EDS,CHD, his leg issues, ADHD and his weird immune issues too. So no-one knows what causes what symptoms or how everything is effecting each other. The best we can do is try and make him as comfortable as possible and give him the best. Things that we cannot fix we will just deal with them. Things that need attention we will take those one at a time. Broc is going to be very busy medical wise for the next couple of months maybe year or 2.

We need to figure out his leg issues but we cannot do that until he has been seen by cardiology and they will not touch him until we have figured out the rejection/inflammation issues in his brain. So yes he has a long road ahead of him. He is still needing the GI surgery too as his reflux is causing him a lot of issues again too. But this surgery will have to wait till he is cleared cardiac wise too as we cannot do any anesthesia until we know for sure what is going on with his heart.

Onto the labs. He had labs drawn again yesterday and his eos count is still high. Not as high as in the past but none the less above normal. Dr Boaz wants a normal count for 2 weeks in a row. So he will start his third course of steroids today and that will be for 12 days. We will continue to monitor his labs twice a week until we have normal eos count for 2 weeks straight. If that does not happen then we will be seeing Immunology sooner than the 2 months scheduled appointment.

Also his WBC is low and so are the rest of his numbers off so he is fighting a viral infection too. With that all going on we have decided to keep him home from school another week. We need to have Brocs best interest in mind. We all know how fast he can go from being healthy to extremely ill.

Thank you everyone for all your love and support