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Surgery Day! BD Native, Pre-Op

posted Apr 3, 2012, 6:31 AM by Manny Wilke
Well, today is surgery day. We were scheduled to arrive at 6:30am but it was pushed back until 11:00am, which really stinks because I have been keeping Manny purposely on WI time because of surgery. So, now he is awake and cannot eat or drink for 6 hours prior to surgery. Apparently, this was due to last minute schedule changes with the anesthesiologists. So, I will need to keep him busy for the morning and sneak Abe down for breakfast.
Yesterday was a long day. Didn't sleep much of anything the night before, nor last night, so I should be real ripe by the end of the day and already texted Nate warning him of that at 4am today! We had to leave Uncle D's house at 6am to get to LAX to catch our early morning flight to San Jose. We were able to check-in our hotel early at 10:00am which was really great, and some of the front desk recognized us and asked us how Manny was doing. We of course made it to Simply Sandwiches and ate in the park nearby. Afterwards, we went to Target to pick up some snacks. Abe was wearing a WI jersey and the check-out man said "where are you from in WI" and we said near Madison. He goes, "Have you ever heard of Beaver Dam?"  Yes, he did say that and I think GJ almost fell over. Apparently, he grew up there and brother lives still there - Bob Grook or Crook - and his dad used to work for Nate's grandpa at the chicken hatchery.
We then headed to our pre-op and hearing test. Manny is such a trooper - these are long, long appointments where he really has to cooperate. Unfortunately, and to much surprise, his right ear (which was revised in January) showed NO hearing improvement since this last surgery. I know he was hearing much better until about 2-3 weeks ago when the cough started coming on, but perhaps scar tissue is forming again...I don't know. All I know is that it instantly deflated me, brought tears to my eyes (which I try to hide from Manny), making it difficult to listen/focus on anything they were telling me because my head was spinning. Why. Why. Why. Why can't this little beautiful boy catch a break....he does everything right with pre-op and post-op care. Has missed out on so many things because of it all.
The doctors are as frustrated as we are and unfortunately, they don't know why we can't get the Right ear to hear better. I'm not sure really what was said (despite taking notes) but I guess we'll wait to see over time to see if the middle ear space grows (it can grow as Manny grows), get another CT Scan in a couple of years and see if there are additional options. We could always have the BAHA (what he wears now) implanted in his head, but that was our very last option. He mentioned that with VATERL (the syndrome Manny was labeled with at birth) can cause very malformed middle ear bones and surgery sometimes cannot fix it - yet, Manny seems to be the worse case they have dealt with. A prosthetic Stapes (middle ear bone) cannot be safely put in if he has or continues to have infection - prosthetics do not like infection. While there does not appear to be fluid/infection now, there was during last surgery.
I'm going to try to surpress that frustration/sadness for today and concentrate on my boy, getting him through surgery, and sending positive vibes and prayers that this Left ear will cooperate and be perfecto, perhaps carrying the Right Ear to hear "good enough". Nate/Eli will be flying in tonight, probably about an hour after we get back to the hotel, now that surgery has been pushed back. Nate did go out at 10pm last night to purchase another Angry Bird stuffed animal since I think we lost Manny's at Uncle Dereks - and Target did not have any. Way to save the day, Daddy.
Thanks for all the prayers. Manny needs them today. To be honest, I could use some too.