Just keep swimming.....

Well Broc had labs done again today. We were very happy with Fridays number but not with today's. Today's number is concerning cause it means the minute we taper the steroids his numbers start going back up. Dr says to finish the course and then we will see. Broc cannot get his flu shot nor be around anyone that has had the flu mist. School is definitely out the question for a while still. Our family is dealing with a lot right now but we just keep swimming even though the current gets stronger at times, and take one day at a time. 

I know to many people it looks and sounds like Broc is healthy and you are all wondering why this poor kid cannot go to school and be around other people. Inside his body is very ill and fragile. It beaks our heart to tell him he cannot ride his bike or go play at a friends house.

I know every post I have written for a while seems like I am repeating myself but it seems that is what is happening. Broc is also having choking episodes at random times which leads us to believe that his reflux is now out of control and he needs the Nissen surgery soon. But before we can think about that we need to have his heart evaluation to make sure he is cleared for anesthesia. After that we need to have his legs looked at. Something is not right with his right leg. He is having continuous pain and discomfort in his leg and foot. 

But before we do all of that we have to make sure his body is done rejecting the patch in his brain. No body will touch him while he is immuno compromised.

Our family will be going through a lot in the next couple of months. We know that we will get through anything by relying on Jehovah for strength and comfort. We appreciate all your prayers and support.

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

Neuro-surgery follow up.

Broc and I took a trip to see Dr Boaz on Friday. His incision is still not healing well. Some of the internal stitches that are supposed to dissolve are pushing through. He pulled 2 of the purple stitches that are coming out. The rest he couldn't get to and said they should dissolve. We are cleaning his incision with peroxide everyday. Once he goes back to school we will keep it covered while he is at school and then let it breathe once we are home.

He is hoping that since he cut the 2 knots out, the incision will continue to close and heal. We are doing labs again Monday to see what his eos levels are. Dr B is not happy with 1 point above the normal range. He thinks that normal range is even too high for Broc. Broc is still restricted from gym class,recess and all sports till further notice. This is not making for a very happy boy. He has been still for too long now so he says.

Broc continues to have fevers still. We are not thrilled with the side effects of the steroids either. He has also developed a rash too which we are not sure about. No-one seems too concerned so I guess its no big deal.

We visit Dr Walsh (Mito Dr) this week too per Dr Smith's request. Not sure what he will have to offer but we will wait and see.

Broc will start school this week ,half day only. He is really excited. We are not sure how being on steroids will effect that. So we might wait and see if that will happen.

Dr Boaz is also setting up an appointment for us to see Allergy/Immunology to see if they can figure out why his body is reacting so badly. Gortex was used to patch Brocs dura which is the membrane that covers his brain. People very rarely react to it, that is why Dr Boaz used it.

As soon as we have anymore news we will share it with you all.

Thank you for all your love and support.

The sky driving home.

Cardiology Update

Broc saw Dr C yesterday to have a look at his heart and see how everything is doing.

We spoke a little about all that has happened. His brain surgery, his new leg issues and continued fever for no reasons. We also spoke about the reaction that he had again now with his new patch in his brain.

He also thinks seeing an allergist will be a good idea to figure out if  Broc does have allergies to Nylon and other synthetics.

While Broc was having his echo he was a champ. He layed so still watching a show on the ipad. Once Pam was done with his echo Dr C came in and asked for more pictures. That is when a moms heart stops and you know the next thing he is going to tell you isn't good news.

The aortic insufficiency or leakage of his aortic valve has gone from moderate to severe stage. We spoke about all the things to look for but we also know that Broc has never presented us with any noticable changes where we can say we think he is having some heart issues lets have him checked out. He did show signs in 2010 after his cardiac cath and we knew something was wrong. That led to OHS for his aortic valve repair. That is the only time Brocs body has shown us a sign that something was wrong.

Dr C would like Broc to be seen by Dr Hoyer down at Riley for an evaluation. He would like the Drs down there to see what he sees to make sure everyone is on the same page. He also wants to make sure no intervention is needed at this time. He doesn't think so but would like to make sure.

Within the next 6 months we will make an appointment with Brocs cardiac team down at Riley. Due to ins we cannot make it any earlier than 3 months otherwise they may not cover the cost and we would have to pay out of pocket for everything.

We do know that once again he could stay in this stage for a couple years but will have to be monitored more closely and may also have more restrictions.

It looks like Broc certainly will have a full schedule at least the next 6 months.
We need to make sure that his body has accepted the patch in his brain.
He will be having another brain MRI to make sure every went well with his brain surgery.
We need to figure out why his right leg has stopped growing.
He also needs to have 2 small GI surgeries too.
Then lastly he will have his heart eval at Riley.  

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

Our Good News was short lived...

I really hate waiting for a Dr to call me with the results. Waiting seriously drives a mom crazy!! So I emailed the nurse last night to see if maybe they had the scanogram results ready. This morning I opened my email and there it was.

The results of Brocs scanogram were certainly NOT what we were expecting. When Brocs PT teacher expressed her concerns about his leg length discrepancy a month ago, that night Mark and I measured Brocs legs too and we also came up with a similar number to her. All 3 of us were thinking surely not. We knew Broc was having a check up in a months time and never thought of it again. They cannot be that bad? Could they?

Unfortunately they are. Brocs LLD is now 1.2cm. Six months ago his leg length discrepancy was only 8mm. Essentially Brocs right leg stopped growing between now and 6 months ago. This huge difference is very concerning to Brocs vascular surgeons. They want him to have a CT Angiogram as soon as possible. First things first we have to wait for Brocs body to stop rejecting the patch in his brain. We are on our second round of steroids for it. We draw labs every 3 days for this. Once the steroids are completed we will continue to draw labs. If his eos count stays within normal range for a week straight then we are good to go for the angiogram. The angiogram will tell the Drs if there is any other vascular issues going on or if there is diminished blood flow to that extremity.

Mark nor I have the heart to tell Broc that he has to undergo yet another procedure. When it gets closer to the time we will let him know. For now he is dealing with so much with the rejection of the patch and now his incision has come open too we don't want to stress him anymore than he has to be. We have to put ABX cream on his incision now and keep it free from infection while it heals from the inside out. The steroids that he is on is also slowing the healing process a lot.

Little Marks anxiety is also on a very bad high at the moment. He just wants his brother fixed. He told me tonight that he wants to take Buddy away so that he wont have to have anymore surgeries. He said he knows that Jehovah will fix everything in the Paradise. He prays everyday at breakfast for him to please bring the Paradise so Buddy wont have to be sick anymore. I can only imagine what is going through his little mind. As parents Mark and I are having a rough time dealing with all this. We are relying on our God everyday to give us the strength and faith we need.

We want to thank you all for 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.


   

Feeling a little defeated...

Today Broc went to the hospital for his lab draw. I was very surprised to see that his eos count was much higher than it was 2 weeks ago. Broc finished his steroids on Tuesday morning. The labs we had drawn on Tuesday morning were very good his eos count was all the way down to 2. Today it was all the way up to 16.

Broc started a fever Wednesday but we thought maybe he had caught something. He does now have congestion and a cough so he does have something brewing but the Drs are thinking that his fever is related to his inflammation and allergic reaction coming back.

Our ped got a hold of Dr Boaz and together they decided to put Broc on a 10 day course of steroids with a strong dose for the first couple days then we will taper his dose towards the end. We are really hoping this new steroid will do its job otherwise we could be looking at another spinal tap or more testing.

The last time as I have said before the reaction did take at least a month or 2 to calm down but this time we are dealing with Brocs brain and not his leg so its a little more concerning this time round.

Thank you to everyone for all your prayers and support today. It was a really rough day for me.

On a happy note Broc will start his virtual learning this week. I am very excited for him to start school. He will also see his teacher once a week too.

Another long night

Tuesday night Lil Mark and I ended up in the ER. He has been having a few urology issues. These have been going on for a long time. We always thought it was related to his any GI issues but since he missed a whole day of school and spent a night in the ER the Drs decided that it was time for a referral to a urologist.

I called as soon as they opened yesterday and we got him in to see Dr Ransone. The same Dr that did daddys kidney stone surgery last Friday. He looked at Mark and his history and decided that he needs a kidney ultra sound and a cystoscopy. With having the 16p he could have kidney issues and with having Ehlers-Danlos Syndrome many urology issues like I.C. (which I have) go along with that. Its better to have him checked out to make sure we are not missing anything.

Broc had a meatotomy done a few years ago and that seemed to have helped him a lot. Next Friday 12 Sep Lil Mark will be having his procedure. It will be done under general anesthesia as it is too painful to do under local.

This mom just keeps swimming , swimming ,swimming.

On another note Broc has caught a Summer cold. We have started breathing treatments and are hoping that since he was on the steroids his immune system is not too weak to fight this off.

Thank you everyone for your love and support.

Marks first bible reading

Lil Mark gave his first Bible reading tonight. Mommy and Daddy are so proud of you Buddy. We know that from here you will only grow spiritually. You read so clearly and with lots of confidence. We love you Buddy.

GREAT NEWS!!!!

The steroids have done their job. The inflammation and allergic reaction that Broc had in his brain is gone. His eos count is back to normal. Despite all the nasty side effects that Broc experienced like eating and not eating, flushing cheeks, leg pain and high blood sugar. He was a trooper this past week dealing with all of these. He will be starting therapy tom to help build his strength up again. He was a little too active on Sat and paid for it on Sunday. He feels like he is all healed until his body reminds him that he had major surgery and its still recovering. The mind of a 7 year old.

We had a camp fire this weekend too with some s'mores. We also grilled sausages too. They were yummy.

Daddy is feeling much better from his surgery. Thank you for all your love and support.

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