I hugged him a lot, maybe too many times, but I couldn't help it. Feelings of love and appreciation just emanate from my heart for him and it's hard to control myself. I am endebted to him for the great job he did with Alexa's first surgery and allowing us to get to know our sweet baby and allowing her to form a part of our family and now again he will hold her life in his hands even though it just feels unreal at times. I feel like I can and should just hug him forever. But of course there was lots of to discuss so I had to let him go.
We talked about how well Alexa had been doing and about the cath findings. He explained that the extra muscular VSD's found present a little more of a problem but that he has a few ways he can go about finding and fixing them. For that he needs the cath doc to be in surgery with him though to help him with fluoroscopy if he cannot do the fix on his own the way he hopes. He also mentioned the importance of patching the main VSD in the left ventricle to the Aorta very carefully and with lots of smooth room so as to have no obstruction. I have read about LVOTO (left ventricular outflow track obstruction) and have read it is not good. The left ventricle is a very strong pump as it pumps blood out to the body, the way they patch the VSD almost creates something like a hallway before it gets to the door meaning the Aorta out to the body. This hallway if to narrow can create some obstruction to the blood flow which can lead to problems with the left ventricle, which equals bad news. I am very happy that he is aware of the importance of getting a big enough space there. He also talked about the conduit and what he might use, meaning a cadaver artery/vein with a valve or a contegra conduit, it all depends on what is available that day. He mentioned he would like to get in a 16-17 mm size conduit that he would hope it would last 5-10 years. I hope 10+. We talked about bypass, about hours in surgery mentioned hopefully getting in to the OR by 7 a.m. and being done close to 2:30 p.m. He said the risk of surgery has gone down slightly since she is older and stronger. Mentioned now a 95% success rate. But let me tell you that that 5% is enough to make your blood turn cold. I can honestly say though that we love him and that we trust him. We trust he will do his complete best and he knows what he needs to be aware of and take care of, which is everything. He mentioned Alexa also has one tiny collateral vein that he wants to clamp down and get rid of, and of course he will have to close off her BT Shunt. He said recovery time is about 7-10 days about. It is a big operation and completely rearranging the way her heart works and pumps blood, it will take some time for her heart to get use to the new flow.
As far as dates he mentioned Thursday Feb. 18th or more possibly Tuesday, February 23rd. He said he just needs to make sure about the anesthesiologist and that the cath doc agrees to travel down for the surgery. He mentioned he is going to be in and out of town for the next couple of weeks and doesn't want to do her surgery in between. He wants to do her surgery and be able to focus completely on her after care. Which is also what we want and another big reason why we like him. He likes to be very involved in follow-up care and we know he has a great intuition for things. So it reassures us knowing he will be there every step of the way. We also found out the hospital is a Magnet Status hospital and received an award as one the top ten hospitals in the nation, so this along with positive feedback from other parents make us more comfortable about the hospital in general. We are going to wait to hear back from him with a definite date but he pretty much told us to plan for Tuesday, February 23, which is as of right now is officially less than a month away.
My feelings are all wacked right now. Before starting this post, I had just finished myself a good cry and I even made my hubby cry with me.
Of course we try to focus on the positive but honestly it feels like I must face death in the face and go past it and hand my baby over to a doctor that will cut her open and try to make things better for sometime, hopefully for a long time.
But really I want God to make her better for good and forever.
But for now, this must do, and I hope and pray, and I cry and I wish, and pout, and I scream, and a sigh, and I hurt, and supplicate, and implore, and drop to my knees, and I bring my hands together, and bow my head, and bury it into my pillow, and sob, and I lose my breath, and stay quiet, and stay still ...
and then I feel God's hand and comfort and peace. He will lead us through.
"When my disquieting thoughts became many inside of me, Your own consolations began to fondle my soul." ~ Psalm 94:19
Good night. Going with my baby.