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.
