One day at a time

Broc has still been pretty much the same. We still don't have the results from his test last Friday. So far he is tolerating his formula at a slower rate. Slow and steady wins the race right? He has had a couple bad days in between where we vent him more frequently throughout the day. We went down to Indy this week to see his Neurologist. She was very sad to see how much his body has declined over the past year. She ordered more testing and the decision to do Whole Exome Sequencing was brought up. The possibility of mitochondrial progression was discussed too. It was a really good visit.

Once we were done we headed back to the hotel and met up with Kelly and Aiden for lunch. What a blast!! Broc has so much fun just being a kid and having fun.

Once we were done stuffing ourselves with food, well everyone besides Broc we headed back to the hotel for a nap and some down time. I was totally exhausted from driving all over the place. We had to be back at Riley at 5:30 the next morning.

All went well with his Endoscopy. Dr Steiner was great as always and very concerned in Brocs health and decline as well. There were some findings on his scope. The biopsies that were taken will hopefully give us some clues. We may not like the answers but never the less they will be answers. He was hoping to have his CBC results before we left but unfortunately they were not available. I did receive the phone call while we were driving home about his results. Once again they were some critical levels. I spent the better part of Friday afternoon trying to get a hold of all his Drs to let them know the results. What a headache!!!

After many phone calls we have an app to see another hematologist at Riley tom. Broc and I will be making the trip down to Riley again tom bright and early. We are really hoping to get some explanations and understanding as to why his levels go so low and what is going on. We are really hoping to leave with a plan.

Please say a prayer for us that this Dr will be understanding and helpful.

We have started a booster to raise money for a wheel chair or special needs stroller for Broc. I know many of you say insurance will pay for it. Believe me we have tried. None of the many dxs that Broc has qualifies him for a stroller or wheel chair. He is needing more support for his body and legs that the regular wheel chair can give him. If you would like to purchase a Broc's Buddies T-shirt here is the link.

http://www.booster.com/brocsbuddies

We are going to have a couple more apps where we will need help with Lil Mark. If anyone would like to help please let me know.

Thank you for all your prayers,love and support. 

Waiting patiently.....

Broc saw his GI on Tuesday. He was very sad to hear that his gut had shut down again. He ordered some more testing which was done yesterday and another one will be done next Friday at Riley. We are hoping that these test will give us a few clues as to what we are dealing with. If the tests are all negative we have plan A. If they come back positive we have plan B. Our GI is trying desperately to give Broc the best quality of life as possible.

His lab work was looking really good on Monday when we had labs done at the Riley ER so we were all breathing a sigh of relief that hopefully things were looking up but unfortunately Broc had scheduled labs drawn on Tuesday and the rug was totally pulled from under our feet. Brocs ANC is not good again so we are staying homebound. If you wish to visit please make sure that you are not ill or been around someone that you know is ill.

Another referral has been sent to Riley for us to see another hematologist there.We are praying that it will not be a similar experience as last time. We are looking for a Dr to think outside the box as we know Broc writes his own medical journals.Also not to look at Broc as he sees him in front of him but look at his history and consider everything that has been going on. Anyone that knows Broc well he always looks good.Very rarely does he look "sick". His sensory has been extremely bad this week. He has been doing a few more things that he has not done before. Some of them are a little concerning so he has to be watched 24/7.


Little Mark had a wax museum on Tuesday. He had worked so hard on his Babe Ruth project. We really wanted to go as a family to support him.We were very happy with the good lab report Broc got on Monday so we thought it was safe to take him out in public. Unfortunately we did not have the results back yet.Thankfully we had him wear a mask.

By the end of the evening Lil Mark was done. They had done the wax museum for the whole school during the day and then all the parents and grandparents in the evening.

Thank you for all your love,prayers and support.

Some Good News , Some Bad News

Sunday night was a long night. Broc started retching and crying in pain again. This went on all night. Daddy was up helping me too which was very nice seen as he had to work the next day.

Its so sad to see him like this cause we know that we cannot do anything but try and help him get comfortable. We tried nausea meds, gas drops,venting him nothing helped him. Eventually at around 1:30am we switched him to pedialite and hooked up IV fluids.

He was finally able to get some rest but kept crying out in pain. Needless to say I only got about 2 hours of sleep Sunday night knowing we had to leave at 4am Monday for an app at Riley. It was a quiet drive there as he slept the whole way there.

Once we got there I was able to grab a quick bowl of oatmeal and coffee. Then we headed off to EKG,Echo and to see Dr Hoyer. It was great to see Nancy again,our favorite echo tech. Getting Broc comfy on the bed was quite the challenge as his was in so much pain any movement was so uncomfortable for him.

Nancy had Disney channel on TV for Broc so we were able to distract him very well. She was very sad to hear all that has been going on with Broc since we last saw her.

 

Once our testing was done we went to see Dr Hoyer. He was also saddened to hear all that has been going on and continues to go on. He kept saying that he has ever had another Broc patient. He surely is unique. He is not the first Dr to have told us that this which makes this journey all the more difficult.

Dr Harris said that Brocs heart looks good. He was very happy with the function and said that the leakage that is still there is in the mild to moderate stage pushing closer to the moderate stage. Once again nothing surgically will be done at this point which we are very happy about as this boy surely need a break from the OR. Unfortunately he will still need to have surgery down the road. His leakage is something that will continue to get worse over time. He is also going to bring Brocs case to the table when they next have a conference to get some other opinions. Broc is having all the symptoms of needing surgery at this time but his heart is not bad enough. His ventricle is not thickening like they would expect to see so that is great news.

While the news of his heart is great we still have no answer as to why Broc is experiencing all these symptoms. Seen as we were there at Riley yesterday Dr Hoyer wanted us to go to the ER and have Broc checked out. They did labs and xray and said that its possibly another pseudo obstruction but nothing that they could help us with as treatment is gut rest and IV fluids and since we already have IV fluids at home we were good to go.

We are seeing GI again this morning to see if we can come up with another plan. We may have to have the TPN talk again. I have spoken to a lot of moms whos kiddos are on TPN and it really seems to be beneficial to help these kiddos. 

Thank you for all your prayers love and support. We are trying our best to hold our heads above water. Life with special needs kiddos certainly has its challenges. If any of our friends and family are willing to learn Brocs care and would like to help out please let us know. Mark and I would really like a night to recharge every once in a while. Taking care of Broc is a 24/7 job. He has good days and bad days. We are learning that what is happening to Broc is not going to go away. Life is going to change for us all as we learn how to adapt. We have some more apps coming up for him and more labs as his local team are really hoping to figure out the best way to help him. 

We know that through all of this Broc truly does rely on Jehovah to help him and comfort him. He was so eager to tell his echo tech yesterday about jw.org and how they have wonderful children's videos and songs and that she would love to watch them cause she loves children. My heart melted. He wasn't afraid or scared it was like he was just talking to to her in regular conversation. This boy truly can warm his parents heart. 

 

We are stronger than 1 man!

Mark and I took a trip down to Riley to see a Dr who we thought was going to help us. Instead it was the WORST appointment I think we have ever had with any Dr besides that same person a couple years ago. It makes us so mad and hurt to think about how we were treated that hes not worth talking about.

A new day is here and we are very thankful for that. We have a few specialist here locally on Brocs team and they truly care about Broc and giving him the best quality of life they can. We need people that truly care and have Brocs best interests at heart.

We saw GI yesterday and he has been in contact with Brocs EDS Specialist. Together they have been brainstorming and coming up with some possibilities of what we could be looking at. We are still in the testing stages. We have been told that they are looking at the more rarer diseases. We have also been told that it could be a mitochondrial issue and this could be the start of progression for Broc too. GI ordered a slew of blood work yesterday to rule out some things and figure out what Brocs body is not absorbing. If necessary we will start adding some supplements. It seems like he may not be absorbing them in his gut so they will have to be IV medications.

Brocs counts are still very low therefore he is still susciptable to catching anything that is floating in the air. We are extremely fortunate that he hasn't caught anything yet as his immune system is extremely low.

We have to be patient with the testing. He will be having a small GI study done next Friday. They will also be ordering a series of biopsies of his GI which will be done in the OR too. That will be done at Riley. They need to see what his small bowel and intestines look like now and see how they function. They will be checking the mucosa in his small bowel ,stomach and intestines which will give them some clues too.  

Broc will be having a cardiology checkup next Monday too. That will give us a good idea as to when his next Heart Surgery will be. We know that his heart is weakening and are sure that its taking strain with all these illness and low counts that he is dealing with. We are hoping it will still be a couple years but will know more once we have his app.

This past couple months has been really stressful on all of us. Trying to get used to a new normal with all Brocs medical equipment ,hospital stays and surgeries. We appreciate all your prayers and need them now more than ever. Lil Mark is dealing with a lot trying to understand why his brother doesn't have the energy to play with him like he used to, why he has to have different people taking care of him in the morning and afternoon when mommy and daddy are gone taking care of his Buddy. Why we all cannot sleep under the same roof every night. Wondering how his brother is feeling and going to feel from one week to the next. Mark and I try not to talk in front of the boys about Brocs medical issues or what we as parents are feeling or facing. I'm sure they can feel the tension in the house. Lil Mark broke down on Wednesday evening. I think everything finally got to him. He has a really hard time expressing his feelings we think it got too much for him. He even woke up in the middle of the might sobbing all I could do was hold him till he went back to sleep.

As a mom you heart just breaks into a million pieces. Mark and I know how stressful this all is but for an 8 year old to comprehend all of this is just plain crazy!!

This blog is a wonderful outlet for me to express my feelings and really helps me. We really appreciate all the friends and family that are reaching out to help us. It means so much to us. The next couple weeks will be filled with apps and procedures and all your help is appreciated. I have tried to let people know in advance if we need help but sometimes that is not always the case.  

Here is a picture of Broc playing with his nurse Jeremy. No matter how busy his day is,he always makes time to have a little fun with Broc.

I know many of you have not seen this precious face in a while so here he is.

Another crazy week

It has been an emotional week for Mark and I. Brocs body has never recovered from what landed him in the hospital at the end of April. His WBC and ANC continue to be low. Some of his other numbers are a little higher than they should be too. He has lost his olive complexion and become a pale little boy. He is trying really hard to do all the things he used to but having a hard time finding the energy to do them. We know that his heart is weaker too so that could contribute to him not having enough energy. The fact that he is sick is also putting a lot of strain on his weak heart, all the more reason for us to figure out what is making him so sick. He truly should look a lot sicker than what he really is with the blood counts that he has. He has not felt well for so long that his body is used to being sick and he can handle it fairly well. The big tell tale sign now is how his digestive system is failing him.

We have been on the phone all week with trying to get Drs to give us answers. Finally I was at my wits end and called a Drs office at Riley and begged them to help us. We have an app with this Dr on Wed afternoon. We are trying not to be negative but at the same time being realistic. Once again they could come up with nothing and we are again back to square one which would lead us on another journey. OR they could come up with some not very pleasing answers but non the less they will be answers and we can hopefully have our little Buddy feeling better again.

Because his body is fighting something he has very little energy left for his digestive system to work properly. He has already been on IV fluids at home due to him not tolerating his feeds properly. His gut is extremely slow at times which makes him have lots of pain and not feel so well.

I'm trying to vent him every couple of hours to help with the gas/air trapped inside his belly. Today was another bad day so he is on pedialite until we can speak with his GI in the morning. His GI has consulted with Cincy and he is waiting to hear back to see if there is anything they can do to help Brocs GI system.

Thank you for all your love,support and prayers. We can really use lots of prayers this week. Prayers that the Dr is willing to help us and listen and prayers for Mark and I to have a calm heart.

What a week.

Broc was discharged from the hospital on Tuesday afternoon. Finally he was able to tolerate his feeds again and feel a little better.He has still not gained all his energy back and his very tired at times. Even a short run outside with his brother is tiring him out like crazy. He is getting frustrated cause he cannot keep up, he has to keep taking breaks and Lil Mark is getting upset cause his brother cannot play with him. Man .... tying to keep everyone happy and explain all the reasons why is really tiring in itself.

Brocs count continue to stay low so it will be another week of staying at home. We are trying to keep up with his school work and give his body the rest it needs to recover. We have been in contact with some more specialists to see if they can help us. We are still waiting to hear from them.

We really appreciate everyones help while I was at the hospital with Broc. Unfortunately we never have a lot of warning before something like this hits him and we need to head to the hospital. Hopefully with our new plan we will be able to stay home from the hospital more often.

He has a wonderful nurse that comes to the house once a week to change his dressing and play with him when he has the time. Broc loves playing games with Jeremy. His Uncle also came to visit him at home and spend some time playing with him too.

Unfortunately Broc does not have the energy of a regular 7 year old so sitting down playing games with him is what he loves to do.

Broc doing sand art at the hospital with Mike. That is the Wii station he played while he was passing the time too.

Here is his dinosaur sand art that he did. 

Uncle Troy playing games with Broc

Both boys have learnt to tie shoe laces now but Broc was going a little too slow for Mark so he figured he would help. 

Broc will be having a cardio check-up on the 18 May so we can see how his heart function is doing.

Thank you for all the prayers and loving support for our family