We had our appointment with Dr. Parrish this morning. We brought the Sildenafil with us and gave the first dose to Drew around 9 am. The nurse took his blood pressure every half hour and while it did go down a little, it stayed in an acceptable range. Drew spent the morning watching Happy Feet and Cars on our portable DVD player in the treatment room. He didn't even seem to mind the frequent BP checks. The medication should be at its peak concentration about two hours after it is administered so since we didn't see a reaction by 11:30 we were free to go. They started Drew on one-quarter the maximum dose and we are supposed to go back in one month to increase the dose. Also, we have to give him the medication three times a day, which means I'm going to have to remember to take it with us if we're out in the middle of the day.
On the way home from the appointment Drew fell asleep in the car before noon! This is very unusual for him, he hardly ever falls asleep in the car unless he's exhaused and all he did this morning was watch movies. His naptime isn't until 3 and even then he usually only falls asleep every other day. Since I was told that if his blood pressure got too low he'd get dizzy and pass out I was a little worried that this might be caused by the medication. I called Dr. Parrish and he doesn't think it was caused by the Sildenafil. I think Drew may be starting to get a cold (Ava came down with one last night) so maybe he was tired from fighting that.
Some technical notes about the medication:
--We were concerned that Drew would have to be on this medication forever. If it lowers the pressure in his pulmonary artery and they increase blood flow to the PA by doing the Fontan, won't he still need medicine to keep his pressure down? The answer is that when the pressure is lowered it gives the arteries the opportunity to heal themselves and then the pressure will be lower without medication.
--We wondered how they know if the medication is working and how they decide when to do the cath in the 6-12 month period. A lower blood pressure indicates that the medicine is working, but we won't know if the arteries are being healed until they do the cath. The nurse said they will probably do the cath in six months and if the pressure is not low enough continue the medication and do the cath AGAIN in another six months.
--We were concerned that Drew would have to be on this medication forever. If it lowers the pressure in his pulmonary artery and they increase blood flow to the PA by doing the Fontan, won't he still need medicine to keep his pressure down? The answer is that when the pressure is lowered it gives the arteries the opportunity to heal themselves and then the pressure will be lower without medication.
--We wondered how they know if the medication is working and how they decide when to do the cath in the 6-12 month period. A lower blood pressure indicates that the medicine is working, but we won't know if the arteries are being healed until they do the cath. The nurse said they will probably do the cath in six months and if the pressure is not low enough continue the medication and do the cath AGAIN in another six months.
Drew watching Happy Feet
1 comment:
we are keeping him in our thoughts and hoping this medicine works.
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