Surgery follow-up

We drove down to MI to see Dr Eliason for a follow-up visit for Broc.We also had some tests done too. Broc had an ABI (ankle brachial index) done which was great.His pressures were normal.

All the gel was so ticklish esp in his groing area.Mommy had to do some serious distracting with her phone.

Next we went to have the bilateral duplex u/s. I couldn't take any pics in there as it was too dark.We had a scray moment for just a moment as the tech couldn't find his graft.Thankgoodness someone else was called in and all was found.Phew...... Mommy breathed a huge sigh of relief.

Next we went to wait to see Dr Eliason.Playing games is a great way to pass the time especially when daddy is there to play them for you.

Dr Eliason came in and said that all the tests look great.His graft is wide open and the connection site is great too.His pulse on his right foot is almost the same as his pulse on his left foot.He has a great pulse in his right groin too.He said that Brocs scar is a little wider than he wanted but it does happen in some kids so we are putting scar cream on it to see if that will help.
He asked how recovery has been and we told him that Broc has been pretty active.He was not really happy to hear that and then in the second breathe said well he is only 5 what can you expect from him.So Daddy and I have to be much stricter with Broc.While Dr E was examining his scar on his abdomen he showed us some sutures that are under the skin and said that they will take 3-6 months to heal/dissolve still so we have to be really careful.

Broc does have a heamatoma at the top of his groin scar and that will take time to heal too.He said he is not sure why Broc is still having leg pain at night but has assured us that it is not from a lack of blood flow.He thinks it could be the body's way of getting used to the new growth if its making any or just his muscles from still being overworked.

He also cleared Broc to start P.T. on his right leg to build muscle strength.

They have determined that the high eos. level was caused by a reaction that his body had to the graft.Fortunately his body is accepting it now and his eos. levels are going down.He is still having fevers and we are not sure about those yet. He will have his last CBC done on Wed and if all his numbers look great then we can stop those.I am sure he will be so happy,although the boys loved getting a hot wheels car everytime Broc had blood work done.

We will go back to MI in November for another follow-up study.He will have a ABI,duplex u/s , CT scanogram for bone length and see Dr Eliason for a visit again. Broc will be having 6 months visits with studies for the first 2 years and then we will have yearly visits with studies after that.

Broc is still struggling with tummy pain so we are not sure if the meds are working for him or not.He is able to eat a little more than a few bites at a meal and is back up to 50lbs again.

Here is a pic of Broc with Dr Eliason.

This is Big Bird that is at the entrance of Mott Childrens Hospital.The boys loved him.

Mark was pretending he was a baby bird.

On our way home from MI we stopped at a Big Boy for breakfast.

Here is Brocs vascular team :

Last night we stayed over at Christine and Adolph's house.We had a lovely dinner together with friends.There were some children too that the boys had a great time with. We have made some wonderful friends during Broc's journies.

Thank you everyone for your continued love and support.

Neurogeneticist - Mito /Metabolic

We all drove down to Indy this morning at 3:30am. Lots of rain on the way down so I was very fortunate that we left early.

First we spoke to Dr Walsh's colleague.She asked all about Brocs history -birth,medical,physical etc.As usual she cannot believe how many things he has been through.

Once we were done talking to her Dr Walsh came in.He was very polite and had a great manner with all of us.Broc really like him which is huge in his world. He firstly explained what the mitochondria are and how they help our body. He thinks that the eye rolling that Broc has is a form of tics.We are doing the Video EEG in a week to rule out any seizure or epileptic activity. He said that nothing will need to be done about it unless it causes him harm or gets in the way of normal daily living.

He then said that the chromosome disorder that the boys and I have (16p11.2 Duplication Syndrome) is Brocs primary dx and that any motichondrial disorder would be secondary. They have found that anyone that has a chromosome syndrome would more than likely have an issue with their mitochondria. He said that they would draw some labs and see what they say. He said that a muscle biopsy is another way (actually the most accurate way) to determine a mito disorder but he said that most people with 16p or any other syndrome would come back with an abnormal muscle biopsy due to the chromosome issue they have. He said that with Broc having been through so many surgeries he didn't feel that it was necessary unless any of the lab work came back with red flags.

We also found out that many or all of Brocs health issues are related to the 16p syndrome.The only difference is that he has Shones Syndrome as well (his heart condition) and that makes it all the more harder for his body's defense systems to kick in when he gets ill.

The reason too that Broc is very unstable when he does get these viral illnesses is that with his low muscle tone his body is normally trying so hard to function and keep itself moving then add in an illness and now the body has to fight the illness as well as still keep his body functioning properly.Therefore making him unstable and very clumsy when he is ill.

Although there may not be a cure to what Broc has Mark and I have a really good understanding as to why his body acts the way it does.We know that his fever and viral illnesses is part of his 16p and that we just need to manage it the best way we can.Staying away from crowded places during cold and flu season and also not taking any risks with him either.We have some protocols set in place for when he does get sick and we will work very closely with his ped and immunologist when this happens.

The labs from the mito testing should take about 3 weeks to come back.We will share the news -
good or bad when we get the results.

Broc is still dealing with his low grade fever and high eos. levels.He will be having a weekly CBC done until these levels go back to normal.If they start to climb again then more extensive testing will be done.

All the biopsy testing came back negative from the G.I. scope he had last Monday which is great news so now we are trying a new med to help with his gastroparesis pain and motility.

We will be travelling down to MI next week for Brocs follow up appointment to see the vascular surgeon.We are very eager to see how his body is healing itself on the inside and how his body is accepting the new graft and adjusting to the new blood flow.

Broc and I will be checking in Peyton Mannings Children Hospital the first week of August for his Video EEG.

A special outing for a special boy

Little Mark has really had to grow up so fast and learn to deal with so much at such a young age. When Broc is ill and has to be in the hospital or when he has surgeries Little Mark just goes a long with what ever we do.He never complains about staying with different people or being separated from us. Sure he misses us, but deep down he knows that we have to take care of his brother.

He has been looking forward to seeing the new Ice Age movie.This past Saturday Little Mark and mommy had a special day.We had a great conversation in the car on the way there.He was so excited to be going out by himself. We spoke long and hard about how he feels when his brother is ill and in the hospital. I told him that Broc always asks for him and always asks for a sticker for his Buddy when he earns one. He was so amazed so find out how much Broc actually misses him and that he cares so much for him. Mark spoke openly about his feelings which was really helpful for Mark and I so now we know what he is concerned about and how to calm his fears the next time we have to leave him.

Once we got to the movie he couldn't wait to get a BIG bag of popcorn to share with mommy and head to the movie.

We had to sit right in the back in the middle so he could see everyone. He LOVED the movie.He laughed so loud and so hard.Mommy loved the movie too. Once it was over we had to wait for the credits to end incase there was something funny at the end. People always miss funny things at the end cause they leave before the credits end but not Mark he stays till the screen goes black. The poor cleaning people came back 3 times to check and see if we were gone yet. There was no funny thing at the end, just a big ACORN.

What a special day for a special big boy. Sometimes we just take for granted that he should understand what is happening and he should know how to deal with his feelings. I think we forget that he is only 6.

Little Mark I hope one day when you are able to understand all of this and you can look back at this post and read how proud mommy and daddy are of you and we love the way you take such good care of your Buddy.

 

Happy 9th Anniversary

Congratulations Honey.We have had 9 wonderful years together and I know we will have many more Jehovah willing. We have certainly been through our fair share of ups and downs and trials. We have 2 wonderful boys and a daughter who has an adorable son and loving husband.

I look forward to celebrating many more years together and creating many more memories. What a wonderful day it was.

Happy Anniversary and I love you with all my heart. Here are a few pics from our wonderful day.

07-12-2003

My mom and dad.

My new family

Thank you to everyone who has loved and supported us the past nine years.

Out of OR

Broc was really loopy by he time he went back.I will post pics when I get home.He is out and Dr Steiner said he did really well.Everything looked great.He did however have food in his stomach.He said it looked like a french fry.I am hoping not as we had that last Monday.So he definitely needs meds to help with motility of his stomach. He did take many biopsies and we will get the results next week sometime. Thank you for all the prayers and support.

 Playing Angry Birds on Travis's I-pad.

All woozy after the Versed.

G.I. Procedure

SUNDAY:
Broc and I will be heading down to Indy this afternoon to stay at a friends house so that we can have a good nights sleep.We have to be at Riley at 7:30am (MI time) tomorrow morning.
Brocs procedure will be at 9am (MI time) tomorrow morning. He will be having general anesthesia for this procedure. We are hoping they can figure out why he is having pain with eating and sometimes drinking.

Thank you for all your prayers and support.

What a scare....... and another procedure.

YESTERDAY:
Broc is still running a low grade fever but acting okay.Not eating a whole lot and is now weighing 47lbs.I know to a lot of you that seem like a lot but before surgery he was close to 52lbs.
The Immuno suprised me and I think he finally respects and me as a person and a mom.He gave us a list of things that can cause high eosinaphils and we checked them all off as not being the answer.He then asked for all his notes from the surgery and he made a copy and said that he wants to study them all.He asked about antibiotics that he was given.He said that can be an option.Another thing I told him about the reaction he had with the dilaudid and he said that could be another possibility or it could be the mesh over his graft.

He feels that surgery and all related are the most recent and they should be looked at carefully.

He said that cause of the way he is acting(fine but something is off every now and then) and the fact that I am very careful with taking care of him he sees no need to admit him as he knows I will call as soon as any more symptoms develope or he gets worse.

He said that it could also be a virus that has attacked his body with his immune system already being low from the surgery or a parasite.He did a lot of blood work today and will let me know when he gets the results.

The range for eos. levels are 0-4%.Broc has been up to 8-10% before but we knew that his allergies and asthma were causing this.He said that he is okay with a count up to 20% but beyond that he is not comfortable with unless it is on the down trend or only a little elevated.He said that if it was nothing serious then it should be only a little higher or going down, but if we are looking at 50-60% then he needs to do more investigating.

He also talked again about doing a bone marrow biopsy but wants to leave that till the last resort as its not what he wants to put Broc through right now.

TODAY:

I got woken up this morning with the surgeons nurse saying they think Broc may have a malignant vasculitus. So I quickly got on the phone to speak to the Immuno Dr and ask what the results were yesterday and what the surgeon was thinking.

So he called the surgeon and I guess the Immuno Dr was one step ahead of us all and had tested Broc for those very diseases yesterday but never told me as it would just worry me. A bit too late now.....

Anyway his eos. count is going down and his neutrophils are low too so we are thinking that he has caught another virus or he had a reaction to one of the medications that he had in the hospital. We can live with a virus or reaction. He is still running a low fever but acting otherwise fine. His appetite is still very low.

Then I get another phone call to say that both of Broc's G.I. Drs have spoken and have decided that with the elevated eos. levels they need to rule out any G.I. issues that may be going on.Broc is still having pain when eating and continues to loose weight. So now we are looking at a very early drive down to Indy on Monday morning for the Upper G.I. Scope. Praying that all goes well and we will be home by Monday evening.

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.