Tuesday, September 29, 2009
When Zac called today, he said that the echo results were virtually the same. Not at all what we
wanted to hear. The primacor drip is on the lowest dose, and they have slightly increased the
dose of Coreg.
Bethany continues to walk several times a day. There have been a few low
Bethany continues to walk several times a day. There have been a few low
blood pressures, but, as long as she is not symptomatic, they are not going to let that interfere
with giving the Coreg.
I was surprised to hear that Dr. Ventura is out of the country. He went
I was surprised to hear that Dr. Ventura is out of the country. He went
to Argentina...I don't know if that was a planned trip, or not. Dr. Mandras was in a couple times
today. She has ordered a "dry CT" scan, which means without contrast. This test is still part of
the transplant work-up, and was ordered because the 1st echo showed her aorta was dilated. It
looked better yesterday, but they wanted to get a good look at all of her major vessels. Zac said
that Dr. Mandras was planning to come back later and discuss the ICD (Implantable Cardioverter
Defibrillator) placement. I haven't heard back from him, but wanted to go ahead and send what
updated information I had. He may wait until after 9 to call, to save on the cell phone minutes.
Finn saw Dr. Sands today. He is 13 pounds 13 ounces and is 25 inches long. That puts him in
the 90th percentile for size at this age, in both categories. He got his 2 month shots :-( and
voiced his displeasure at that event LOUD and LONG. He is a little cross tonight, but not too
bad, mainly just not his normal smiling self. He is still enjoying his big butterfly balloon, though.
After the visit to the doctor, we went to the lounge in L&D, so he could calm down, rest and
have a bottle before going over to Tara's house (Tara is one of Bethany's cousins). Tara fixed a
nice lunch ready for me, and enjoyed holding Finn. Bethany's aunt, Yolanda, another cousin,
Atchison, and Tara's mother-in-law, Barbara Barber all came to see Finn. Tara's three adorable
children were there as well. Great kids! Finn napped most of the afternoon, while I ran to
Irvington to collect some more baby things, and drop off some clean laundry. One of Tara's
friends had a meal fixed for me to take home, so all I had to do was pop it in the oven. Nice
treat, after being away from home all day.
It is now about 90 minutes later than when I started this note. Zac called again, and spoke with
Kim for awhile. So, I waited until they finished, so I could include the latest. As I said earlier,
Dr. Ventura is out of the country. Dr. Patel (the original doctor in NOLA) wants to put the
Swanz-Gantz cath back in, and list Bethany as a 1A. Dr. Mandras wants keep listed as a 1B,
and work toward getting her home for awhile on Coreg, so that they can wait for the best match
for a heart. Going home would involve the ICD, of course. There was a heart available today,
but the donor was a 45 year old woman who weighed 110 pounds. Dr. Mandras did not think
that was a good match for Bethany. Dr. Mandras also said that she suspects that Bethany had a
heart condition prior to the pregnancy, and that this is not completely related to peripartum
cardiomyopathy. Dr. Owen came in 45 minutes after Mandras left, and spent a long time
questioning Bethany about her daily activities over the past few years. He feels that, given her
normal activities prior to this, her heart was fine, or she could not have been as active as she
has been. He is still convinced it is peripartum cardiomyopathy. So, can you see how confusing
this all is?
Zac had been doing some research, and read that the Coreg works better if you eat
Zac had been doing some research, and read that the Coreg works better if you eat
before taking it, and get up and walk to keep the blood pressure up, and the heart beating a
little stronger from the activity level being up. He questioned Dr. Owen about this, and Dr.
Owen confirmed that to be correct. So, my questions is, WHY do they not optimize the Coreg
by ordering that it be given after eating, and have tell Bethany to walk before and after the
Coreg is given?????
Zac and Bethany are making sure now that she eats prior to her next
scheduled dose, and that she walks more before and after the medicine.
So, to make a long story short, not much has changed. Thanks to all for every prayer, every
kindness, every email...You help us stay strong!!!
God Bless!
Beth