This past Tuesday, after we had dinner with the Justin and the girls, Vada and I took another trip to Peoria. She was scheduled to be at the hospital on Wednesday at 8 AM for her sedated ECHO so the hospital reserved a room for us at a near by hotel that way I wouldn't have to drive at five in the morning to get there on time. I am so grateful that they do things like that. This was the second occasion where the hospital provided us with a room.
Besides spilling cheese sauce on Vada's head and forgetting the baby soap the night went well. She fell asleep at midnight and woke up at four, with a feeding somewhere in between (which is pretty close to her "normal" nightly routine), but I was able to get ready and not be rushed so it all worked out.
When we got to the hospital everything went better than I could have imagined. Vada fell asleep and I was able to lay her on me and keep her asleep during the ECHO so we didn't sedate her.
Dr. Bramlet was able to see everything that he needed to see didn't but we didn't receive any set in stone answers then. Actually, what I was told that day was a one extreme or another case scenario. She either would need surgery and need it right away, or she wouldn't and we would be holding off for at least two months. I was dumb founded (which may or may not be an easy things to do) at how undetermined he actually was acting. I didn't understand how it could be one way or another, with nothing in the middle. So, I questioned him.
Dr. Bramlet said that over all children who have Down syndrome and heart issues tend to need operations sooner than those who do not have Down syndrome. Typically the issues seem to arise no later that four to six months, hence the original date for surgery that was given to us during our pregnancy with Vada. He explained that it was either one extreme or the other because she is past that point. He said that he wanted to meet with all of the Cardiologists and get the opinions of the whole group. He told me that they would discuss Vada either in their Friday meeting or on their Monday meeting. Then once they had discussed her he would be calling me back. Mentally, I had decided that if he called me back saying we would need to do surgery that I would take Vada in for a second opinion. Truthfully, while I am happy with the news that I received today, I am still wondering if I should do that, or if I should leave well enough alone.
Around 8:30 AM I did receive a call from Dr. Bramlet (i'm so grateful that I didn't have to wait until Monday). He said that he had discussed Vada's case with his partners and they had come to the conclusion that Vada's VSD is what they are considering "nearly insignificant", (his words). What that means is that yes, the hole(s) are still there, they haven't gotten smaller, but they haven't gotten larger either. Vada shows little to no signs of "struggling" and they all agree that the surgery should be held off awhile longer. By waiting it will give Vada time to grow more and for her heart to recover from the nasty affects that took place because of the ACTH. Doing the surgery now could also bring forth issues pertaining to her recovery due to her stenosis and immunity.
When it comes to Vada and her many different medical concerns I am constantly reminded of the movie Dude Where's My Car. There is a scene when the guys are in the drive through of a Chinese restaurant...
and while it may seem a little inappropriate, there has always been another "and then". I cant wait until her heart and the seizures are no longer an issue so the next "and then" is something joyful and exciting!
As long as Vada does well on a cardiac level, her next appointment will be in four months making Vada fourteen months old and putting us into the month of May 2011.