July and August update

July our Buddy had a big sinus infection that he needed steroids and antibiotics for. Broc continues to fight recurrent viral infections. They leave him with a very sore throat,dehydration, lots of body aches and chocking on his secretions. The really bad ones he ends up in the hospital with an ileus or bowel obstruction. We have also had some quiet evenings at home just enjoying the warm sunshine and sunsets.

We were able to take the boys to the fair to enjoy some local Monster trucks.

Broc had an MRI of his brain and spine to rule out any nuero changes. Some new issues have come up and we are still looking for answers for them. Thankfully no new brain changes.

His central line sprung a leak unexpectedly and it had to be replaced. It's always fun when we can meet up with friends.

Broc and I took a trip to Cincy for a sleep study. Thankfully no new changes there either and he doesn't need any intervention while sleeping.

In the beginning of August we had a few cooler days and we visited our local zoo. The boys love watching the animals and reading all the interesting info about them. They could spend hours there.

We consulted his Pulmonary team and another breathing treatment was added to help him. We are also having to drain his belly more often on the bad days to help with the secretions. Unfortunately sleep is a hug part of Brocs life now. He naps almost daily now, sometimes twice a day depending on how hes feeling or what he did the day before.   

 We said goodbye to another wonderful therapist. You will be missed greatly. We wish you well on your next adventure. We are sure all the new kiddos will love you as much as we do.

We had a trip to Cincy for Brocs annual scopes to see what his insides were looking like and to rule out some things too. We did rule out some things but as usual found out some more important things which will be investigated by his Riley team. They discovered that he hemorrhages in his trachea and bronchi when he coughs. We have seen this happen to other mucosa membranes when they have trauma so this is very concerning. 

While we were there we met up with some friends for dinner and also took Broc to the museum for a bit of fun. 

This past week we saw hematology to discuss the findings from Cincy. They drew a ton more labs on Broc to see if Broc has any other blood disorders. Broc also needed a booster of the pneumaccocal vaccine as he has a very low immunity against it. We are hoping the booster will help him have better immunity against it. We are also hoping that it will help him with the upcoming Winter months. Joe did an amazing job with giving Broc his shot. They are also referring Broc to Immunology for a further workup. He is not able to be on the immune therapy he was on last year so we will see if there are other options for him.

Palliative care has agreed to give us a little pain relief medication for Broc until the Chronic Pain Team can see us. Unfortunately it seems that his team still want him evaluated when his pain is extreme as they feel it is not safe for him to be at home during those times.  

Broc has a few more appointments coming up. Lil Mark has a test and then a procedure at the end of the month. Please keep us in your prayers as we navigate all of these.

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