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
  

Brocs MOTT update and good news.

Yesterday Broc and I took a trip to Michigan to see Dr Eliason and his nurse Char. Broc loves them and so do we. They have been so kind and patient with us all. First we headed to ultra sound to see how his graft is doing.

As usual it really doesn't bother Broc unless he has something to watch on the ipad. It is very sensitive for him to have the ultra sound so we try and distract him as much as possible. The calmer he is the better pictures they can get. Great News!!! He has excellent flow through his graft and the velocities are great too.

Next step off to have ABI's. They measure the pressures in his legs and arms.

This took a little longer than usual as the tech only had 1 cuff that was child sized. Normally they would do the pressures at the same time. He did wonderful at laying so still.

More Great News!!! He has great pressures in his legs.

Then off to see Dr Eliason and Char. He was very surprised to find out all that has been going on with Broc. We talked again about the patch in his leg that he reacted to and we found out that it is a human umbilical vein graft that is wrapped in a nylon woven mesh. So the mesh that Broc reacted to was the nylon mesh. So its synthetic and not human as we thought. That brings us to the reaction that Broc is dealing with at the moment with the patch sewn into his dura (the membrane over his brain). Dr Eliason thinks that is would be wise for us to see if Broc has some sort of allergy to nylon or synthetic materials in case he would have to have something again in the future.

He never ordered a scanogram with this visit but with Brocs PTs concerns about his leg lengths and the fact that he is favoring his right leg still and looking a little lop sided he went ahead and ordered one anyway. We dont have the results of that yet as it was an add on. If Brocs leg length is starting to go the wrong way then we will be referred to ortho so that they can see why his bones are not growing like they should. The reason they did the surgery when they did was to give Broc the maximum benefit of having his leg length coming back. The last time we had his scanogram taken his legs were only 8mm different.

All in all it was a great visit with great news. If his leg bones or spine or hips are causing issues then we will have to visit ortho for that. We also only have to come back next year and not in 6 months time.

More good news is that Broc had labs today at the hospital and his eos level was down from 16 to 4. Normal is between 0-6 so 4 is a wonderful number. We have to keep checking his labs every 3 days to make sure that number stays in a good range.

Broc will be having a cardio check up next Monday to see how his heart is handling all these fevers and inflammation.

Thank you every one for your love and support.


   

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.

Some Updates on Buddy's & Mommy's appointments

I will do my update first as it is short and sweet ( I mean pretty). I had a short arm cast put on on Monday and have to wear it for 2 weeks.After that I will be doing some intense therapy to get the full range of motion back in my wrist. I have been using it a little too much as it is hurting tonight. Nothing a little pain med wont take care of.

Isn't it pretty? I figured how many times in your life do you wear a cast. I might as well make it a stylish one.

So Broc saw Neuro and Immuno this week. Neuro thinks he may be having migraines and that is causing his off balance ,excessive talking and many other things he does when he gets ill. She thinks the migraines are causing him not to focus well and just total confusion in his body. His system is a total mess when he is ill so it could be a possibility. She wants us to try and describe his headaches to me and show me where they hurt. We have a picture of his head and he has to point on the picture where he hurts.

Immuno was very surprised that Brocs illnesses have not let up at all and nothing has changed. Not sure why he was so surprised.... He drew all his immune levels ,anti body,and every vaxine anti body level to see if they are still the same or if they have dropped any. He also asked me to get all the bills we have gotten from the insurance when Broc has been ill. Which includes cost for CBC , Drs visit,

x- ray,and then hospital cost if he was admitted. He is hoping to make a case with the insurance to ask them to approve a 3 month trial of treatment vs the cost of Broc being ill several times a month. He is going to be meeting with the medical director of our insurance as this will be Brocs only hope. We are not certain that this will work but he wants to give it a try. If it doesn't work then we know that we have done everything we can. Prophylactic ABX are not an option for him due to his risk of c- diff.

He also has chronic drainage which we need to try and dry up as its causing him to be re-infected over and over.

Although I am not holding my breathe on this as we know its a long shot we are certainly going to hope he gets approved.

Here are a few pics from last weekend when we went to the Special Day Assembly.

Sitting on the bench at Bob Evans after breakfast.

Taking a walk during the lunch break.The boys love to come outside to see the fish.

Rollercoasters

There is a reason why I hate rollercoasters.They make you sick to your stomach.Broc had another CBC done today and yet another blood culture. His Immuno Dr was concerned that he may be having a reaction to the mesh but the surgeon said otherwise.As long as he has been doing these vascular surgeries since 1995 they have never had anyone react to the mesh, but I guess there can always be a first time.

So we were instructed to have another CBC done today.His eosinaphil count was up to 31.4% today.It was 27.9% on Friday evening.Last night everyone was concerned about the mesh and saying possibly that he may need surgery again and now the Immuno Dr feels that his fever and eos.levels have nothing to do with surgery and that maybe with Brocs immune system being low from surgery he has caught another virus that is causing havock with his levels. So once again we are on the virus train again.

If Broc still has a fever tom the Immuno Dr will put him on a course of steroids to see if it helps.He will also call the surgeon on Thursday to discuss if anymore needs to be done. So from having possible surgery again to now him having a virus.OH MY ..... what a ride it has been for us. Now we are in wait and watch mode. Wait to see if he developes any other symptoms or if his fever goes any higher.

Two of his stitches are sore to the touch so we are keeping a close eye on those too. Everyone is on high alert for Broc developing an infection somewhere. With it being a holiday tom all the Drs are away.So all we have left is the ER. We are going to try our hardest to avoid it at all costs.

We were really hoping to have a break from lab draws, Dr visits and hospitals after his surgery but I guess with Broc you never can tell.

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.