Thursday, April 19, 2012

Another Day

Emma is still doing the same. Same is better than worse. I'm grateful she isn't doing worse. They started her on a different medication today. The diuril wasn't working the way we anticipated. It was causing some problems. She started throwing up the last two days and I'm convinced that's why. She hasn't even spit up once while in the hospital.

Her new medication is called aldactone. Which I just learned cannot be picked up at just any pharmacy. They actually have to make the drug, or compound it, was their term. Thankfully the pharmacist here went and found a pharmacy in Saratoga Springs that is right by us, that can make it.

Her doctors are now starting to wonder if there is another reason behind why she is breathing so fast. They are wondering if she has a very narrow airway that is not supported well. That could also cause rapid breathing. There are tests they could do, but they are quite invasive and involve sticking a lot of tubes down her nose to her throat. At this point they aren't interested in doing those, especially because it is something she will most likely grow out of as she gets bigger. So we are just keeping that in mind for now.

When Emma was first born the murmur was really hard to hear. Many a doctor did not ever hear the murmur. Then after it was caught, most nurses could not hear it and doctors would really have to search for it and could only hear it in one spot on her back. The last 2 days I have had multiple people tell me how loud her murmur was. These were people who had never seen Emma before. I didn't know what to make of this.

Today when her cardiologist rounded on her, he pointed out that the murmur was louder. This can either mean something awesome, or something not awesome. As holes in the heart close they get louder, because the pressure rises in that one area. That is the awesome part. Or it could mean that there is just a lot more blood flowing through that hole. That part is not awesome. Her hole won't get bigger. It is what it is. But the amount of blood flowing through can change constantly. I'm really holding out hope that the hole is closing. Oh how I will be praying that is the case.

They are going to do a follow up x-ray tomorrow to see if we are making any headway in the fluid in her heart and lungs. In the next couple days they are going to do another echocardiogram. That will be able to tell us if her hole is closing or if there is more blood flowing. So fingers crossed!

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