Vascular:
We saw Dr Eliason at the beginning of June. Broc was complaining of increased leg pain and his PT was noticing that he was having a harder time with his right leg. His appointment was bumped from October to June. Unfortunately we found out that Brocs legs are now further apart than they were in October last year. Then they were 3mm apart now only 8 months later they are now 6mm apart. That may not seem like a big amount but in the world of growth plates and blood flow it is. If his legs get to 9mm apart or more we will need to start talking about surgery and adding in another artery was that damaged when he was 2 months old. We did have this discussion in Nov 2016 when his legs were 9mm but he grew and things leveled out again. We are so hoping this will be the case again. Dr Elisaon also thought that Brocs heart murmur was a little louder than before and wanted us to get it checked out. We called cardiology and they were ok with us waiting till his appointment in October.
Pulmonary:
Broc has been having a lot sore throat on and off with choking episodes too. He has also been struggling with being out of breathe just by running to the bathroom and back. We went back to see his old Pulmonologist in South Bend. He was very understanding and intrigued at hearing everything that has been going on with Broc since he last saw him in 2011. He added 2 breathing treatments which have really been helping him not feel so out of breathe. He also added an antibiotic and steroid treatment for a week to see if Broc had any chronic sinus issues or lung issues that could be causing the reflux. We spoke a lot about his core muscles not being as strong as they need to be to help him with a productive cough when his body needs too. We spoke about long term assist machines that could help him if things got worse too. He was not getting much relief with the sinus issues as we had hoped for so he added something to help dry him up too. It has helped a little. He also ordered a chest and sinus CT which Broc will be having this Monday. We are hoping to see some findings on the CT so that we can possibly help him and we are hoping not to find anything which means we can rule them out.
Neurology:
We saw Dr Smith for Brocs annual visit. Broc has had increased tics. Some are effecting his daily activities and others not. The medications we could use have a lot of side effects and because Broc's body reacts to many medications we opted to just deal with his tics. Broc has been falling a lot lately, having increased leg pain and a couple other neuro issues. When Dr Smith was doing her exam she noticed left sided weakness and issues with his tone which his PT had commented on a couple times too so she has ordered a brain and spine MRI which he will be having next Wednesday. We are hoping not to see any more changes with his brain but if there are we will deal with them like we always do.
Cardiology:
Broc had his regular visit with his nurse supervisor and she also commented on how much louder Broc's heart murmur was. She advised us to call cardiology again which I did and they were agreed that Broc needed to at least have an echo done to see if there had been any changes with his heart. His cardiac team were able to get that scheduled on the same day we saw neurology which really aved us driving down for another trip. Unfortunately we go the news that his new heart valve that he had put in in September has already become obstructive. Its only been 9 months!! A valve we were hoping to last 10-15 yrs at least. We know that Broc's body is very different and doesn't like to follow the norm. We will see Dr Hoyer in October for our visit then back again for an echo in March to see the progress of his valve. It was very disappointing to hear that his valve is already going bad after such a short time.
G.I.:
Broc unfortunately fell ill on Friday night with very bad belly pain and it got worse by Saturday morning so after giving all the relief meds that I could at home we took him to the ER. It was discovered that he had a possible bowel obstruction/ ileus. They called his team at Riley and they asked us to bring him down to be evaluated and observed. Broc had been dealing with severe diarrhea and they were concerned he may have c-diff or another infection. Thankfully everything came back negative and with a couple days gut rest and close monitoring of his labs and xrays we were able to come home. He is still not back to baseline but doing much better. On the CT that was taken they found some findings with his kidneys and bladder. These are a little concerning so he will be seeing Urology in September for some testing.
All in all not a very uplifting update. These are all things that we know can happen to Broc and we know its part of all the diseases that he has. We just hope they wouldn't be happening so soon or so severely. When we have a plan after all these tests we will share another update. If you have any questions please feel free to reach out to me. We aim to give Broc the best quality of life that we can and help eases his pain as much as we can so that he can be the boy he wants to be.
Thank you all for all your love,support and prayers. Thank you too for all the friends that help with taking care of Lil Mark when I am away taking care of Broc.
