Mayah’s Surgery Update

Since we are HOME I am going to update Mayah’s surgery day.

We left for the Ronald McDonald House on Sunday afternoon, after church.  We dropped the boys off at Nana and Pappy’s.  They had chosen to stay there instead of coming with us.  Since Nana was home-that was okay with them!

We had a nice time with Mayah the night before her surgery.  She got to play in the RMH and enjoy her new Nintendo DS game we bought for her.  At RMH they have a pull out couch in the living room and a queen size bed in the bedroom.  Mayah slept in the bed, Dan slept on the pull-out. 

I stayed up late reading “Twelve Sharp” by Janet Evanovich.  *note to self, need to get 13 tomorrow at the library*  I crawled in bed and snuggled with Mayah-she wasn’t feeling anxious, but I was.  I confess, I was upset even before the surgery at dealing with the pain I thought Mayah would be in.  She was having her BAHA’s implanted into her skull.  (Bone Anchored Hearing Appliance) Sounds painful to me.

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Enjoying a snack the night before her surgery

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I was chowing down on a delicious chicken and shrimp kabob for dinner

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Playing her new game!

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Waiting for them to call our number to go back and get prepped for surgery!

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I think by this time Aunt Mimi had sent Mama a “Mommy we miss you” video message from the boys.  I loooved it!

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Getting silly with Daddy on surgery day

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very happy! 

This time I opted for her to have the little shot of cherry-like syrup to relax her before we headed back to the O.R.  The nurses said it would make her silly or relax her.  I was hoping for relax-she got silly.  I kept trying to calm her down and Daddy kept getting her all wound up.  By the time she got into the O.R.  she hit panic mode.  They let me put the mask on her to make her fall asleep.  Eventually she calmed down and went under.  Next time Daddy promised to help keep her calm instead of playing too much after the “happy syrup”.

The surgery took just over 3 hours.  Everything went well.  We met with her awesome ENT to go over the details. 

The bilateral implants went well.

Her esophagus is still red so he biopsied it.  We will have results hopefully by Thursday.

She has to see him again on Thursday to check the wound and remove bandages.

She needs to have her jaw extracted to open her airway even more.

She needs another sleep study in 6 weeks.

Her red esophagus could be food allergies.  We will discuss more at the next appt.

He is fully confident that in 3 months she will be healed enough to add the hearing aids to the implants and she will be HEARING!!  (that’s my favorite part)

We had to wait a little while longer after meeting with him to see her.  Finally they called us back and this is what we saw:

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She gave us some nice smiles right away.

She was still groggy so it went back to this:

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She got settled in her room in the PICU and was immediately asking for food.  We were able to order her a soft diet dinner and she had plenty of drinks before that got there. 

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watching movies

She was pain free for much of the night.  She asked to go and play-since she had no issues they allowed us to take her to play.

We didn’t make it far.  Dan and I went to grab dinner and Mayah looked green.

I grabbed her and went to the nearest trash can.  She didn’t vomit so I took her right back up to her room.  She played Nintendo DS instead.

She ended up throwing up a few times that night and once on the way home today (playing DS in the car, which generally doesn’t bother her, but today it did).

She is grumpy.  Mostly because she has actually ZERO PAIN (praise the LORD!) and I won’t let her play anything “fun”  she has to have no exertion for 2 weeks.  Hopefully the doc will let us shorten that once we see him on Thursday.

It’s difficult to explain to your child who doesn’t understand any of this why she can’t play.  Especially when she is having no pain.  This is generally a tough time on Mayah, but I understand why I do the things I do and that’s all that matters.  I know it’s making me look (and feel sometimes) like the bad guy because she doesn’t understand, but I have her best interests in mind.  She will make it through this.

Hopefully we only have 1 more surgery left this year!!

We are home now (one day early!!) the boys are happily asleep in their own beds.

We have decided with a few of the smaller incidents that next time they are definitely coming with us to the RMH to be near their sister.  Nana and Pappy (and Aunt Mimi too!) are awesome for reaching out and wanting to help, but we think next time we’ll all prefer to be together.  Time will tell.  It’s worth a shot.

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