Moving!

I realize this title could be very misleading!  This girl keeps us moving-physically, emotionally, spiritually, just moving! 

Leaving for Fort Worth early Monday morning for her 24th surgery.  She has gotten REALLY good at picking up on all the signs that something is up so she began suspecting something on Sunday.  We do not believe in lying to her even if it prevents some anxiety (for all of us!)  So, if she suspects and asks then we tell her yes.  We never want her to not be able to trust us so we never try to mislead her.  Now that does not mean that we do not do many things for her to not suspect something too early because it is stressful on all of us but we tell her once she asks.  In fact, her daddy hates when nurses say no ouchies today.  He has even told them before that they were lying to her!  Yes, he did!  She just has to go through so much and we want her to trust us when we tell her what is going to happen to her.  We are like that with all our girls.  We don’t sugar coat.  It is what it is and we feel life #1 we have to be honest with them and #2 it better prepares them for real life.  ALL of that to say that she knew what was going on and she handled it really well.  She is getting so much better with handling these things.  She did ask a million times if it was her ears and was good with that.  I guess she figures what can they do to my ears that they have not already done!  Gown on and ready to move to the OR.  This was right before pre-meds.  Bless her smiling face, you can see the anxiety in her eyes.  She will be really brave and then she will fall apart and then get it together again before falling apart again.  I wish I had gotten a pic of all the caretakers in their yellow attire!  We wondered why every person that came in to take care of her had a yellow covering over their scrubs.  I also wondered why on earth they were taking her temp with a regular thermometer.  Well when they took her blood pressure with a monitor that they took out of the box and then placed back in when they were finished A asked why.  Turns out that somehow her chart has been flagged as MRSA.  They have to cover themselves and throw away everything that touches her.  She has had staph many times in her ear but it has never been flagged.  So, hospital policy is that we get this special treatment for 3 years!  Dr. Bauer said he started to ask them why now but decided she would be better protected by her special treatment from catching everyone else’s germs so he let it go.  We love him!  In recovery and still very drugged but determined to sit up and to get dressed!  She immediately insists on putting her shoes on because she knows that means she gets to go home!  She is funny!  Notice her bright pink shoes.  These are actually orthopedic shoes.  I was so excited to be able to find cute ones.  Her feet are extremely flat and as she gets older and bigger it gets worse so these are the best shoes for support.  Also, notice she always has this bear and that it has a band on its ankle.  She has never really cared for stuffed animals.  When she had her cochlear implant surgery they gave her this to take to surgery and she has been to surgery with Sallie the 2 times since.  She loves this bear.  She sleeps with it sometimes at home but prior to surgery, during, and for recovery she wants this bear.  Works for us!  Only Sallie would entertain herself on the way home with a barf bag!  She thought it was so funny to do this!  Silly girl!

Everything went well.  He said the left ear had healed really well once he got everything out to be able to see.  He told us that he felt better about implanting that ear than he had before.  He got a few surprises in the right ear (implanted ear).  He was planning to clean it while she was under anesthesia. Part of the muscle flap in that ear had resorbed (which means basically it has disappeared).  This could be a major problem.  However, she has a skin layer over the electrodes.  Praise God!   The electrodes can not be exposed which would be an issue with the muscle flap resorbing.  Also, in a “normal” implanted ear with a middle ear the muscle flap not being there could cause that area to be pulled down and leave the electrodes dangling all of which would cause a trip back to surgery to try and get the electrodes back in place and/or covered.  So, he is not overly concerned at this point about what is happening.  Also, because of this happening with the muscle flap a pocket was created in the ear and we want NO pockets in her ear.  A pocket is a great place for the tumors to grow and hide.  So, he removed this pocket which created a good deal of bleeding.  She has done great.  She had some bleeding and some balance issues both of which did not last very long.  GOD IS SOOOOOOOO  GOOD!

What now?  We have a follow up in 6 weeks with him to check everything from surgery.  We have made the decision to move forward with the second implant.  We feel this will give her the best hearing possible and most importantly we feel at peace that this is the right decision.  We do not know when this will happen.  Of course insurance first has to approve and it might take longer for them to approve the second implant.  We just made the decision and called them yesterday to get everything moving.  The scheduler at Dr. Bauer’s office told me she would have their insurance specialist get the request in yesterday.  They have up to 8 weeks to respond.  Once it is approved (trusting it will be in HIS time) we can then schedule a date.  We are looking at Jan or March.  That could change but right now that is what we are thinking.  Of course there is a lot to coordinate with us and all the Dr’s so we will see.  SO, looks like more moving!  I would be lying if I said I did not dread it all because I do but I just have to keep reminding myself this is progress as hard and trying and tiring as it all is…