A Difficult Day

Yesterday Broc had an angiogram to see if they could figure out why his right leg has stopped growing again. Thank you to everyone who came and stayed with Broc and I. It was wonderful to have the support esp when we were given the bad news and I had to make some very important phone calls. Having people to talk to and entertain Broc for the 6 hours that he had to lay perfectly still was wonderful. We truly have a wonderful,loving brotherhood.

Well onto the bad news. There is a reason why Brocs leg has stopped growing,having pain with activity etc. He has 2 issues going on with his leg.

This picture shows how wonderful his new grafted artery is growing. The new artery is on the left of the picture. Its almost as big if not bigger than the artery on the right side of the picture.

This picture shows the one reason. Where the end of his graft meets his artery its has caused lots of scar tissue and that has caused a narrowing or occlusion. This will be fixed. They will be putting in another patch here once they have cleared all the scar tissue to make the artery bigger.

This picture shows how wonderful our bodies are and the great network of collaterals that his body has made for the bottom half of his leg to still get blood supply. The problem is you can see the gap between the two veins.(it may be an artery I'm not sure). When they decided to do Brocs surgery in 2012 the Drs had the decision to graft and connect either the femoral or the iliac artery. They made the decision to connect his femoral artery as it was the most beneficial at the time and they said grafting and connecting 2 at the same time would be too much for his body to handle. Unfortunately Brocs body is not able to function properly without the iliac artery connected too. This would explain all the pain he is getting in the lower half of his leg with exercise. Somehow this artery/vein that was left before will now be grafted and connected too. Before when this surgery has been done this situation has never happened before.Other children have continued to grow and not have any problems. Brocs situation is very unique and his Drs are learning and trying to figure out the best solution for legs to continue growing at the same rate. They want to know that they have fixed everything they can to give him the most benefit. 

This surgery will not be as extensive as his previous vascular surgery, but it is still a major surgery. Dr Eliason knows that Broc writes his own book and is different than any typical patient. Typically a person would stay 1 night in ICU and 3-4 days on the regular floor. Broc will however stay 1-2 nights in ICU and 5-6 days on the regular floor. That is baring no complications such as gut shutdown,fevers or any other curve ball Broc decides to throw our way.

As soon as I heard that he needed vascular surgery in Jan, we moved his GI surgery up.That will now be on December 4. He will be 3-4 days in the hospital with 1-2 weeks recovery. Then he will have about 2 weeks until his vascular surgery which will have 8 weeks recovery. With that being said Broc will be leaving school the first week in Dec and returning sometime in March. We are not sure what we are going to do about schooling for him. Mark and I will have a meeting with the school to determine the best solution for him.

The biggest help we need is help with taking care of Lil Mark. He does not handle change very well and gets extreme anxiety whenever his brother is ill esp having a surgery. He is so brave with everything that our family has been through.

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

A fun Day!!!

The boys had 2 days off this week. I guess it's called Fall Break. Both boys had a wonderful report card. Third Grade has been a huge jump for Mark and he has had a really hard time transitioning.It was a little rough in the beginning but he is doing very well now. He had wonderful grades. He is not happy with them as he wanted all A's like he got in Second Grade but we had to explain that its okay not to get an A for everything. The homework is more intense this year. Its not more just maybe more time consuming for him.

Broc has done really well too. He was graded on all the work that him and I worked on at home. His teacher said that he has transitioned very well into school again. He only attended for 3 days. He will go back next week again for 2 days only.

Yesterday we took the boys with some friends for a fun day. We did mini-golf in the dark. That was pretty cool. Then we went bowling and lastly we ended our day at the boys favorite park.

These two pics are now and then. They boys had their pics taken in these exact same spots when they were 1 and 2 years old. Now they are 7 and 8yrs old. I so wish time could stand still. We loved that age with the boys. 

 

We are so happy that we had such a great day cause little did we know that Broc would be having his procedure 5 days later. We got the call yesterday to say that Broc will be having his angiogram this coming week. We were hoping that it was going to be later so that Mark could come with me but unfortunately the Dr that knows Broc and will be best for his procedure is retiring in Dec and they wanted to get Broc scheduled before he left.

Mark and I are very worried about the results of this procedure. We were told that if there is a blockage they would not be able to stent anything as they do not stent children with these issues so Broc could be looking at vascular surgery again OR if this is a bone issue he could be looking at an orthopedic surgery. Either way the news will not be good.

Please pray for strength and comfort for us as we go through this and that Mark,I and the Drs will make the best decision for Broc. Also please pray that Lil Mark has a calm heart and that his anxiety doesn't consume him. He has had to be so brave lately and we know that he worries all the time esp when his Buddy is not with him. He has really enjoyed going to school with his Buddy.

Thank you everyone for all your love and support.

A GREAT DAY!!!

Yesterday was  great day!! Our Buddy went to school after 8 weeks of recovery from his brain surgery. I was nervous sending him. He was nervous not knowing where to go and what to do. Markie took great care of him like any big brother would and walked him to his classroom. Truly he is the best big brother. Love him so much. He was so happy to climb on the bus with his Buddy yesterday.

It was a very grey morning but there was a  rainbow and the sun came out later.

We also got the most wonderful news yesterday. Remember in my last post I wrote about Broc getting immune testing well one of his numbers did come back low. Don't get me wrong the only reason we wanted his numbers to come back low was so that insurance would cover the treatment he needs. The fact that his numbers did come back low means that his immune system is not doing well. He has earned himself another diagnosis called CVID (Common Variable Immune Deficiency) We asked Dr Harris why his numbers have never been low before. He said that they have been low but not low enough for ins to cover treatment. His body is so tired of trying to keep it healthy and fighting viruses and bacteria all the time that its finally getting worn out. As soon as all the paperwork gets sorted out we will start his treatment.

Dr Harris says that we should start to see an improvement within 3-4 months. If not then we know that it is not working and we will move onto the next step. Not quite sure what that will be.

For now we have won half the battle, getting it covered. We were wondering how we could raise the money to pay for it on our own. Thankfully we don't have to. We are really looking forward to Brocs quality of life to change for the better.

We are still waiting to hear when his leg procedure will be scheduled.

Thank you to everyone for all your love and support and especially to our God Jehovah. We thank you everyday for the comfort and strength you give us.

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
  

Our mystery boy....

Finally Brocs eos counts are coming down. It seems like the third round of steroids have finally kicked the rejection. During Brocs recovery from his brain surgery he has had a rough time. His incision is also finally healing well. Although it is almost 1cm in diameter at some spots due to EDS and the scaring is quite noticeable we are happy that its finally closed.

Broc has had a couple viruses during his 7 weeks of recovery which have made recovery more difficult for him too. The last 2 he has had back to back not giving his body a break at all.
Tonight him and I were in the ER to make sure he didn't have an ileus or something else wrong. The Drs thought it may be a UTI but that was negative too. He is having a lot of abdominal pain with this virus and fevers too. Its leaving him really crabby and tired.

We normally don't visit the ER with a virus unless he has an extremely high fever or vomiting but we had to make sure there was no serious source for his pain. Preliminary results were all normal but I will know more when I go collect all his records tom. We will also see a ped tom to make sure nothing was missed.

Next week will hopefully be our last week of CBCs to check his eos count. Next we have to have his heart looked at to make sure no intervention is needed there. Then we can schedule the testing needed to figure out why his right leg is not growing anymore. After that we also need to schedule his Nissen surgery too. His choking episodes are getting more frequent too.

Broc has still not gone back to school yet but we are hoping soon. He has been working very hard at home with me and doing very well in all his tests. He is also doing some schooling on the internet too.

Thank you all for your love and support