Marks Neuro app and an update.

Yesterday Mark and I went to Indy for his neuro app. I love Dr T. She is so easy to talk to and was even willing to give me some advice on Brocs recent issues. I love a Dr that is willing to help a mom even though that child is not her patient.

Dr T was very impressed with Marks progress that he has made. His neurological exam was very much improved. She said the first time we saw her she was very concerned about Marks neurology exam but didn't want to alarm me. I kind of find that funny cause seriously nothing could alarm me anymore.

We think we have finally found a good dosage for Marks migraines to stay stable. He is still having them but not nearly as often. It definitely is sunlight and exercise induced so she thinks when he is back out in the bright sun and riding his bike or playing hard on the playground they may return more often. If that happens she says we have a lot of room to go up on his meds. So for now we will stay at a maintenance dose for him.

I myself had a terrible migraine yesterday so driving back and forth to Indy was quite an experience. Thank goodness the glare wasn't too bright on the road and the weather was fine for driving.We made it home safely and layed down. It was really nice that daddy came home early so I was able to rest a little at least.

Mine is definitely brought on by stress. Yesterday I was trying to handle a bunch more things with Broc medically and Marks app. Sometimes my body just says its had enough and forces me to slow down.

I'm trying to conserve all my energy for the next few months coming up.Soon I will start filling up the freezer with meals for Mark. Lil Mark is not much of an eater so he is really easy to feed.

Brocs G.I. surgery will be Dec 4. His vascular surgery will be Jan 8. We got the phone call yesterday.This surgery cannot come soon enough as his pain is getting more and more frequent, which means he is getting less and less blood flow to the bottom half of his leg. So we are on the watch for any color changes or temperature changes in his right leg. As soon as everything is scheduled we will get the call about all the pre-op plans. Before both of Brocs surgeries he will be pre-med with prednisone. He will also have IV prednisone in the hospital and then a small dose after surgery while he is recovering. The benefit of this is to reduce the immune response his body will have to the whole surgical process it will go through. His immunologist feels this is what is happening to his body. Instead of us dealing with high temps and high eos levels again after surgery we are hoping that they will remain stable throughout. Unfortunately that may not be the case and he may still have some reactions but we are hoping to lessen the reaction. His body really takes a beating when it deals with these responses which effects his heart too.

About the choking episodes that Broc has been having too. After speaking to Dr T yesterday she feels that his laryngeal cleft needs to be fixed as it can be complicating matters too. Unfortunately we cannot get it scheduled during his Nissen surgery as the ENT is booked until Feb. We also cannot do it at the same time as his vascular surgery as there is a big risk of bleeding. Which means once Broc is completely healed from his vascular he may be looking at another surgery. The other issue is and we will discuss this with Dr Boaz next week when we see him is that it could be a central issue and is a result of him having chiari and his brain being squashed. So it may never get better. If its a central issue and just needs time or it may be there for life, then we may decide not to do the surgery. BUT that will wait till next year. He has not lost consciousness yet or passed out and is able to come out of an episode on his own so we are hoping that it will get better and not worse.

After typing all this I can understand why I had a migraine yesterday. Its not completely gone today but much better.

Broc has his first treatment on Monday so he will be in the hospital so they can monitor him closely. If anyone has any questions about his treatment please feel free to email me. sambuka18@yahoo.com

Thank you to all of you for all your love,prayers and support. We really appreciate everything that anyone is able to do to help us.

Quite a scare!!

On Wednesday I picked the boys up from school as usual. Instead of Broc running out to meet me he was very slow and quite. He told me he was freezing cold and very tired. I was a little taken a back cause normally he is so crazy I have to stop him from bounding across the road. We went to pick up Mark and got in the car.

I asked how the boys day was and Mark told me all his news. Normally Broc cannot stop talking and Mark cannot get a word in edge wise. All Broc said was that he was so tired in computer lab that he only wrote 2 lines and then had to put his head down.

We got out the car at home and I felt the back of his neck as he was getting out the car.OH MY GOODNESS!!! the poor boy was burning up. I rushed inside the house and had him lay on the couch while I put all the bags inside and reach for the thermometer.

 He covered up with a blanket and was out. I took his temp.104F!!! Oh man panic mode set in. The last time he had a fever this high we were in the hospital for a week and then transferred by ambulance. I called the Drs office and they said bring him in immediately. I grabbed all I could and we ran out the door.By this time Broc could not walk and was barely responsive.

Anyone who saw him was very concerned. We are all so used to him bouncing off the walls and trying to control him. Dr Moustafa came in and took one look at him.He gave me the plan of action. First flu and strep both were negative. By this time Mark had met us there. Then off to the hospital for lab work and blood culture.

His labs came back very concerning so we all thought infection. Broc had dental work done last Friday. If he gets any bacteria in his blood stream it can go straight to his heart. We were all thinking endocharditus. He suggested we come back to his office to give him very strong antibiotic shots. They are very painful but much better than being admitted and being on IV meds. Dr Moustafa knows that we can handle Broc at home just as well. He was drinking so that was the main thing.

Wednesday night was rough but he did well. His fever Broc and then shot back up again. He woke up Thursday morning with little pin prick spots all over his face. I know what that is, petechiae. It can be very serious so panic mode again for everyone. Dr M sent us to the hospital to check Brocs platelets. They had dropped but not low enough to cause the petechiae all over his face. PHEW!!!!! Dr Moustafa thinks the reason is from his fast,extreme high fever. That is his bodies way of dealing with the stress from the fever and infection.

We saw Dr M again Thursday evening and he was very happy to see that Broc is improving. He still doesn't have all his energy back but his fever is much lower and staying low. Yesterday he became very nauseous and had lots of tummy pain so we will be checking him for C-Diff again too just to make sure that is not causing the infection in his body.

Fortunately his blood cultures are still negative which is a good thing it means that what ever infection he has it not a serious blood infection.

We are hoping that he will be better by Monday as there is only 2 weeks left of school and we have a very busy Summer ahead of us. Unfortunately it's not all fun it will involve flying, hospitals ,dr offices, procedures and IV's.

Thank you to everyone for all your love,prayers and support.