Anna Surgery Update

It's been a rough few days!  Anna had a cough/cold all last week and I was worried they wouldn't proceed with surgery.  Thursday night, we put her to bed and hoped for a good nights rest in preparation for our 4:30am wake-up call on Friday.  Well, little Miss decided to cry most of the night, so on about 2 hours of sleep we headed to the hospital early Friday morning.  It felt like deja vu, we had the same nurse admit us as last time and as usual Anna was pretty cranky after being woken up extra early and HUNGRY.  Her cough was also MUCH worse... after several people listened to her lungs, they all concluded that we could still proceed with surgery but warned that after 4+ hours of being intubated her cough and congestion would be much worse, so we would need to think about adding some additional medicine to open up her lungs.  We said no biggie, let's get this show on the road.

 

I was once again impressed with the nurses at Duke and how accommodating they were. When Anna got cranky they quickly found her special toys, bubbles and a nice car to ride around in!

 

 

 Looking rather happy :)

Of course, one of the hardest parts was when the nurse said it was go time and asked us to say goodbye to Anna for a few hours.  They left Anna in her car and she drove herself right on into the OR- didn't even look back!

 

Anna's surgery included Tubes placement in her ears, then Palate Repair, and lastly a small revision to remove excess scar tissue on her lip.  After about an hour the ENT called us to let us know the Tube placement was successful, however Anna had an ear infection so she needed to drain a good bit of "gunk" from her ears and would need to be on antibiotics post surgery.  No problemo, and that explains her being up all night before surgery.  Then Dr. Marcus started on his work.  We got a few phone calls in between, but by noon we got the call that he was finished.  We met him in the consult room and he said that surgery went great.  He thinks her tissue was perfectly aligned (thanks to the NAM) and hopefully will not need another surgery for at least 4-5 years!  Woo hoo!  He explained what he did in surgery- 2 large gashes on either side of her palate to help loosen the muscle and bring it towards the center, then stitches down the center of her palate starting at the gum line and going back towards the throat.

 

Then we went to see Anna as she was waking up...This is seriously my least favorite part.  It's actually just plain horrible.  Anna woke up screaming in pain and needed to be sedated and "reset."  So the nurses pumped some meds into her IV and she went back to sleep for a little bit- they commented that she was a "fighter" and required more than the normal dosage to go to sleep.  That's Miss Banana!

 

When she woke back up she immediately took her bottle.  We were so excited!  Little did we know this would be the only time she would take her bottle.. her mouth was still numb from surgery. 

 

The doctors were right about her cough and congestion as well.  Anna's oxygen sats were sitting at around 88-90 (needs to be more like 95-100), so the anesthesiologist came back to see her and suctioned some liquid out of her lungs and then gave her a breathing treatment.  It worked wonders and they said she was under control enough to be discharged from the PACU and moved to a regular room on the pediatric floor. 

 

Notice how red Anna's face/head is...she was burning up and we think she had a small reaction to the fentanyl they gave her right after surgery.

  

5 hours later we finally got to our room where we spent the next day trying to get her to eat.  She is in a lot more pain than she was with her first surgery and it's been a real struggle to get her to take anything.  She refuses the bottle/cup/syringe, everything!  The nurse told us this surgery is much more painful and the doctors don't tell us beforehand because there is no point in making us worry. Fantastic! 

 

We were discharged late afternoon on Saturday and were all happy to get home.  Anna woke up Sunday morning with a fever of 101.7 though, which was another worry of possible infection.  She's on a ton of medication, so for her to still have a fever is not a good sign.

Sunday was stressful to say the least.  We tried all day to get her to take liquids- milk/apple juice/Pediasure ANYTHING but she would not take it.  We literally had to hold her arms and head and force feed liquids into her with a syringe.  On an average day she has about 40 oz of milk and food... Sunday she had about 8 oz total and didn't have a wet diaper for 13 straight hours, but we did get her fever to break!

 

Today is Monday (I think?!) and we haven't really slept since last Wednesday.  Chris gives Anna her medicine at midnight and then I get up at 2am and 4am to give her additional doses. So far today she has eaten a little more.  She still won't take her bottle, so we are mixing milk with baby food and trying what we can.  Hoping each day gets a little bit better and hoping these sweet tears disappear soon!  It's so very sad to see Anna in this much pain.

Thanks for all of the calls, texts, thoughts and prayers! Keeping praying that she starts to eat and feel better soon.  We are hopeful the worst is behind us and so thankful for Anna's amazing doctors, nurses, friends and family!