Unexpected hospital stay

We had a bunch of important tests scheduled for Broc on Friday and Monday but his body had other ideas. Wednesday night after the meeting he became very ill and started vomiting. He also had really bad belly pain at a 8-10 on the pain scale. We gave Broc all the meds we could to make him comfortable and he settled down. Then it started all over again. We got him cleaned up and started packing the rest of my bags as I had already planned to stay in a hotel so some of the bags were packed.

Unfortunately he woke up vomiting and in pain again Thursday morning so we called his team and they suggested that we bring him down seen as we were already planning on coming down to Indy.

We had a long day in the ER but finally got to our room around 11:30pm -12am. Needless to say 4 hours of sleep is not ideal and made for a very rough next day. Broc slept most of the next day too. His labs scared us a little but made a quick turn around. He was diagnosed with a virus that his liver did not like. His liver hasn't fully recovered but that just takes time.

He was doing really well Sunday morning so the team let us go to the hotel so we could be back fo his appointments on Monday.

Ophthalmology:
Dr Jones was really happy with Brocs eyes. He will continue to wear his glasses to help him focus better. She said she was really happy with how his eyes are tracking. She is very happy that his eyes are no longer so dry and irritated as we know Broc will not take too kindly to have drops everyday. We believe that increasing his IV fluids has helped. Which makes sense she said if he doesn't take in enough fluids then his body cannot produce tears to lubricate his eyes.

To think Dr Hoyer has been listening to Brocs heart for 12 years. He was such a little peanut when he first heard his heart beat. 

Cardiology:
It was so great to see Dr Hoyer. He really has Brocs best interests at heart. Although his heart pressures have lowered which is AMAZING!!!!!! he is still unfortunately extremely fatigued and runs out of energy fast with simple things such as riding his bike or playing catch with his brother and friends. He hates that he has to stop playing and that he is not able to keep up with them. We spoke about the surgery he had vs the surgery they were going to do. It really comes down to putting a NEW heart valve into an already sick body. The heart valve will only function as well as the body tells it to. If Broc only had cardiac disease then it would only be a heart valve issue but unfortunately he doesn't. He has a disease which effects every organ in his body.
We also spoke about enrolling Broc into a program that could maybe help us further but we will discuss that with his Metabolism Dr when we see him November. His vascular issues were also discussed as we know Broc has not had his big growth spurt yet and if we don't give the vessels enough blood flow for him to grow properly then there could be problems.We will be visiting the Vascular team in December to follow up on that.We spoke too about Broc being out of breathe a lot especially when he is ill and doing simple things like running to the bathroom. His O2 sats are not dropping when this happens so we know that it is a muscle issue. There is nothing we can do about that so we just keep supporting his lungs with breathing treatments to help them cope when he is not feeling well. When the O2 becomes a problem then we will deal with that. Overall Dr Hoyer is very happy with Brocs health considering everything he is dealing with.

Our big thing is trying to keep him as healthy as we can through the cold and flu season. If you don't see us around its because we are hiding away from the germs as much as possible. There are times when we know we have to be out of the house, then we will just protect him as much as possible. Brocs last 3 hospital admits have been from a virus that makes his body very sick. Unfortunately there is nothing we can do to prevent him from getting these viruses. We are visiting the Immunology Clinic in November and are hoping that they will have a few suggestions for us.

Thank you for all your love,prayers and support. Thank you too to the friends that take care of Lil Mark while I am in the hospital with Broc.

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.