Congenital heart defects are the most common type of birth defect, affecting 1 out of every 100 infants. Hypoplastic Left Heart Syndrome (HLHS) accounts for a small percentage of all heart defects, but remains one of the most common causes of death in infants with congenital heart desease. Typically children with HLHS get 3 open heart surgeries. There is hope and more and more CHD warriors survive each year!
Wednesday, October 19, 2011
Optimistic about Stanford!
While on our way to Stanford I began having my kidney stone pain again...not fun! Wes made sure I kept hydrated and we stopped often so I could pee. We were a little late arriving to Stanford, between the traffic and the frequent stops. At first, we weren't sure if we would be able to see Dr Hanley because he was due in the OR soon. Luckily, we were able to meet with him. We both really liked him! Wes said, "I'm not big on celebrities, but I felt star-struck when I saw him." He was much more positive than most doctors we have talked to which gave us more hope for our little girl. He said that he wouldn't recommend the Hybrid for Cemaia. We were a little disappointed, but we kind of had that idea. We found out that she would only need to be on the heart-lung bypass machine for the first surgery and that Stanford has an incredible Home Monitoring Program! We were very happy because we've been asking UCSF about this for a while now. We were also told by a previous surgeon that Cemaia's surgery would be more difficult than most HLHS babies to perform because her left ventricle and ascending aorta is super tiny. Dr Hanley didn't seem to think it would be a problem. He said he sees babies like her all the time so he doesn't foresee a big problem. Another thing we were happy about is that they have replaced the BT shunt with a modification to the Sano Modification. They place a valve in the conduit to prevent an obstruction. Dr Hanley didn't make us feel rushed even though he was due for surgery soon and he answered most of our questions. I will be getting a referral from my insurance so we can go back and speak with him and take a tour of the children's hospital. On the way home, I actually let Wes drive because I was in so much pain. We were hungry so we went to Raley's and I got some bread and spinach dip along with a giant fruit platter! Yummy!! Wes went to Burger King to get the Whopper. We stopped at the GNC in Manteca to pick up some more protein powder for my shakes. They only had vanilla flavor...I don't like it too much, but it helps my little girl grow big and strong. We arrived home and I went straight to bed to sleep away my pain. I stayed in bed for the rest of the day, except for the 30 times that I had to pee. I got up to write this and now I'm going back to bed! I have a phone consult at 7am with Dr Galantowicz so I need to be well rested so I can think clearly. Good night everyone!
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