UF Results

Well... as Josh said... "today was a long day Mom."



I concur. He actually fell asleep on the exam table (above) while I was speaking with the doctor. She said it's not normal for him to be able to fall asleep that quickly and in the middle of the day, while we're talking. That just confirms he's not getting good sleep. I'm glad she could see that while we were there since we have noticed him being more tired lately as well.

It was a long day. We had our normal appointments in Gainesville today as well as meeting the pulmonologist again today.

First with the cardiologist... there is still no improvement with the meds. They aren't saying there is progression of the disease either so that is good?? They are going to increase one of his meds to the maximum dose. They are really hoping they can lower the pulmonary pressures. Dr. A also wants to add another medicine, Ventavis. Their website says:


"Ventavis is delivered right to the lungs—the site of the disease. Ventavis is the only inhaled PAH therapy that can be given alone to help patients treat PAH symptoms to walk farther and breathe easier with ordinary physical activities. It can also be safely used with many other drugs. Ventavis is approved for the treatment of NYHA Class III or IV pulmonary arterial hypertension (PAH).

In clinical studies, Ventavis has been shown to decrease pulmonary arterial hypertension signs including lowering high blood pressure and resistance in the pulmonary artery (main blood vessel) leading to the lungs to allow the heart to pump more efficiently."

The Ventavis is also supposed to help decrease the worsening of PAH symptoms. The hardest part of this new medicine will be that it's supposed to be taken between 9-11 times a day. YEP. You read that right. The main concern of course is compliance. We have a hard enough time doing three-four times a day each day. I just can't imagine this 9-11 times. WOW. It is also a nebulized medicine so it's a little different than the normal inhalers he's used. The doctor did tell us if we can at least get 6 in that will be good. We're going to try our best. A nurse will come out and show us exactly how to use this medicine and it's nebulizer.

Another issue that was brought up is that Joshua is still losing weight. Although this month he only lost half a pound, compared to two pounds last month. The half pound is not horrible but it's the wrong direction. I was disappointed because I really thought he was going to gain this month since we really made an effort to get more down him. We spoke at length with both doctors about different ways we can try to get him to eat more calories. It is SO extremely opposite of how the rest of us need to eat. Ugh.

Now... about the tonsils. It is looking like both docs are going to be on board with trying CPAP for now and hoping the PAH will improve enough to make him a better surgical candidate. For now, he will keep his tonsils until we get his lungs in better shape.

Good news is we don't have to go back to UF until January unless there are any complications with the new meds. YAY!!!!

That's about it for now. We hope all of you have a great weekend!!!!