Friday, July 06, 2012

Second Opinion appointment...

Today was a long day...
We took the kids to CF for my mom to watch them.  Brian's parents were out of town so they weren't able to do it this time.  We got the girls to mom and dad's by 10ish.  I nursed Eden and then we hopped in the car for our long drive.  I think the day just felt that much longer since we had to run south before going back north, but it was worth it!  I love and appreciate both sets of our parents for the help they provide in times such as these.  It allows us to just focus on Eden completely! We were trying to leave in time to plan for stops to nurse Eden and to feed ourselves.  We ended up arriving an hour early so we found where we needed to go and then went back to a home depot we saw on our way that was just a couple minutes away (big purchase-some lawn chairs!).  Our appointment was at 3:45 and I think we walked out of there shortly before 5:30.  We had so many questions and she never made us feel like we were wasting her time.  Dr. Debbie Song told us in her opinion it would be ok to wait on the surgery.  She said her brain tissue doesn't appear to be under any pressure right now.  She showed us Eden's scans and said that if the tissue was under pressure it would just be flat, there wouldn't be any hills and valleys like we see on the scan.  Her ventricles are very large, however, so she did say that it would be pretty impossible for her to get through life with ventricles that large, meaning she will need a shunt eventually.  One of them is quite a bit larger then the other and the brain tissue is very minimal around it.  It looks scary...I'm not going to lie.  But I still feel like God is still telling me to hold off doing the surgery.  Dr. Song's suggestion to us was to do another MRI in 6 months just to watch everything and make sure it's staying stable, but that we wouldn't necessarily say that it was time even after that.  I really liked it when she walked in (us having been in the car for so long we kind of took over the room and just spread out Eden and myself on the floor playing with toys all around) and right away saw one of Eden's toys and said, "Oh, a sofi the giraffe...we know all about that one at our house!"  I just felt like she could relate to us better than our other doctor.  And when she said, "if it were my daughter...this is what I would do", I believed her.  I felt overjoyed to be there and so thankful for her and her kindness.  She said there isn't ever really going to be a time we decide is the best time for surgery.  It is just going to be best to get her a little older.  But at the same time we can't ignore that she has enlarged ventricles, we need to be monitoring it by doing periodic MRIs.  I haven't mentioned anything about what she said about the cyst that is in there.  This seemed to be a pretty big concern of Dr. Menezes (our first opinion).  I think he was just being cautious in saying that if that cyst would need to be removed then there can't be any pressure from the ventricles on the brain tissue.  He said the brain tissue needs to be lax so he can lift it out of the way to get to the cyst.  Dr. Song said that type of cyst is really hard to get to and is rarely rarely removed.  It's not growing so she said it will not need removed unless it would start causing seizures that we could tell were being caused by that cyst.  She didn't want to tell us what to do and said we are welcome to come back to her if we decide our other doctor isn't a good fit.  She was very clear in saying that we need to like our neurosurgeon because if/when she has the surgery we are going to get to know our surgeon very well and have a close relationship with them.  I am not comfortable with Dr. Menezes but he is the best that we have found and I think he would do the best job at it.  We are just trying to take it one day at a time.  I find myself praying the Lord's prayer several times a day.  In that prayer it says, "Give us this day our daily bread." meaning, give me just what I need for this day, Lord.  I find so much peace in that and am able to enjoy Eden much more when I am not worrying about the things I have no control over anyway!  God is so good to have put Dr. Song in our lives!  We'll keep you posted on what Brian and I actually end up agreeing to do (since Brian still isn't convinced he wants to cancel Eden's surgery).  Pray that God's will is done!

1 comment:

The Josh Hill Family..... said...

WOW! I love you and enjoyed reading this update. You have so much on your plate, but it is NEVER too much for God to handle. He has that precious girl in HIS hands. Never doubt that there is a purpose! Hugs to you and praying!! Stay strong, Girl! Isaiah 49:16 "See, I have engraved you on the palms of me hands."