Monday, July 6, 2009

Meeting of the Minds

Well, as I am writing this five days after our last cardiologist visit, most of you already know the update and the news from the appointment. But I would be doing an injustice to my daughter if I did not write about our visit. I have not written about her condition in a while anyway so here goes!

As you know, we found out at Presley's two month check that she had a heart murmur which was caused by a defect in her heart...essentially, a hole in her heart. Medically known as ventricular septal defect. I have written about this in the past so this is just an update!

We have been several times to see her wonderul cardiologist. Each time we go I have a feeling in my gut that that will be the day he says it's time for surgery. Presley has, overall, gained about one pound during the whole process. The doctor has her on three different medications, seven doses a day. He has gone up on her caloric intake three times. We are at the highest he will go...10 calories per ounce. He has taken three chest x-rays. He has done two echocardiograms. He has drawn blood. He has evaluated and re-evaluated. He (and I) are getting very impatient. We are not seeing the improvements we would like to see. For instance, he wanted her to have gained a pound in the first stretch of our appointments. Four appointments later...she has gained a pound.

On a positive note, her symptoms have gotten better. The amount of time it takes her to take a bottle has been cut in half. She does not seem to be working as hard to take her bottles and is not very sweaty when she eats. Because of this he says it will not be necessary to put her on a feeding tube. YAY!

However, as he described, just skimming by. The echo that was done Thursday showed that her hole is not any smaller than what it was on day 1. Though we are doing a lot of "wait and see" she is not getting worse. She is not getting better either though. She is not doing as well as he hoped for. Therefore, he is beginning the process needed to schedule surgery.

A week from this Thursday our cardiologist will be presenting Presley's case to a panel of ten cardiologist and threee surgeons. They will then have a meeting of the minds to determine the best treament plan for Presley. This is the initial step in the surger process.

We will return to our cardiologist on July 30th to hear what their results are. In the meantime, I will take her to the pediatrician for a weight check.

It is almost amusing to me to watch Presley at our appointments. She is so oblivious to what exactly is going on. She laughs when we talk about how big the hole is. She never fusses about having her blood pressure taken or anything. Her mother on the other hand, has more knowledge than she wants to have about the whole situation. I know the inside and out of her defect. I know that she will have to have OPEN-HEART-SURGERY. Those are very scary words for my 18 week old baby. Her mother also knows that God has His healing hands all over this baby girl; whether she is healing from a surgery or her hole is healing naturally, one way or the other she is in the best hands she can be.

*Note to self...come back and read this when you are fretting this procedure!!!

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