Sawyer's 2nd Surgery

We made it!!! Six weeks has flown by in the best way possible! Sawyer has already had her 2nd surgery on her right hand, had her arm in a cast for 6 weeks, and just had it taken off and let me just say, this experience was night and day from our last surgical experience.  Granted this time around, she's a "big" two year old, there was less bone sawing, no skin grafts needed, and only ONE hand in a cast---phew!  We are simply over the moon excited to have this behind us and eager to see how she takes to her new configuration.  She isn't slowed down by much, so I have no doubt that in good time she'll be using her little fingers just as we hoped! But let's start at the beginning and I'll tell you how it all went down.

Like last time, we drove down to Houston the day before and stayed in the same hotel right by the hospital.  We visited friends, had a nice dinner, and were all in bed by 8.  Surgery was scheduled for 7:30 the next morning with a 6am arrival time.  Things went so smoothly.  We checked in, completed registration and intake assessment, then in no time at all they were escorting us to pre-op where we met with each person who would be present during her surgery.  The anesthesiologist was wonderful, very personable, chatted with us about our last experience, had already read about how many IV attempts it took, and asked if she would benefit from being given Versed prior to them taking her away from us to decrease separation anxiety.  I'm all about making sure she's comfortable so we said absolutely, but just to confirm that it would help, they had a child life specialist come and assess Sawyer and do a "practice run" of them taking her away to play to see how she would do.  Long story short, she got Versed.  I wish I had taken a video because she was the goofiest, giggly girl after it and I can only imagine she was seeing rainbows and butterflies above our heads.

After that, the surgical room liaison came to introduce himself---his job is to go from OR to OR and check on the procedures then update the family in the waiting room.  Best surprise ever, it was Donald, who was our same liaison from last year!  It took us a minute to figure out how we knew him and when we made the connection, he said he had already recognized us and had walked through the waiting room and saw that we brought the grandparent team with us again.  It was very comforting to see a friendly and cheerful face and we were so glad he was there that day!

Then the man of the hour came by (surgeon), did a brief run through of what his plan was, complication risks, initialed her arm, high five and knucks with Sawyer then they took her away.  While I felt very comfortable with Sawyer in his care and his team, no matter how much you  mentally prepare, it's still so hard to watch them walk away with your baby and know what's in store for her. A few tears and lots of hugs and we went back to meet our parents in the waiting room.

They took her back at 7:30, general anesthesia started at 8 (YAY OR nurse for being a one stick wonder!), and we all went to the cafeteria to get some coffee and breakfast.  After discussions about chickens, goats, and This Is US, we headed back to the waiting room and Donald let us know that Dr N was almost finished!  He finished the last suture about 10:00, anesthesia stopped at 10:15, and they took us back to PACU at 10:30.  It's crazy, but the 3 hours flew by as opposed to our 7 hour wait last time!

In PACU, Sawyer still had her OPA device in her mouth and an oxygen mask on her face so she looked pitiful, but she wasn't whimpering or seeming like she was in pain.  Her surgeon met us in there and went over everything---went as well as we could hope for and he didn't have to use any of the worst case scenario options we discussed.  He was able to reconstruct the ligaments around the finger, rearrange some tissue to help close the cleft, and only had to shave a small piece of bone off the second metacarpal in order to straighten the second digit and align it.  In order to keep it straight,  he inserted two very long pins through the tip of the second digit, all the way through each of the little bones in her finger, through the metacarpal, and down to her wrist.  Long pins.  Not sure if he's necessarily a hugging doctor, but I gave him one anyways. :)

When Sawyer started to wake up, I held and she went right back to sleep.  Our PACU nurse was amazing and so nice to talk to.  He was great with Sawyer and with telling us what to expect.  Again, much better experience.  After she took some water and stayed awake a little longer, they discharged us and let us go!  We were out of there and back to the hotel by 12:30!  Rather than staying another night, we opted to go ahead and make the drive back home since she would likely sleep the whole day anyway and at least we'd get better sleep.

The next few days were a dream.  She took her pain medicine every 4-6 hours, slept through the night, ate and drank fine, and her usual cheerful self!  She occasionally asked for us to take the cast off, but she really liked her pretty cast covers, affectionately named her "little thumb" peeping through the cast, and took no time at all to adjusting to her club.

School was a wonderful distraction and her teachers were equally as great at keeping an eye on her and staying on top of pain.  And not to be boring, but that's it!  No tearful stories of sleepless nights and despair and a child in pain.  This girl ROCKED it and we are SO proud of her!

We went back to Houston around 4 weeks just for a quick checkup and he gave us the option to remove the pins in the office with nothing more than her tylenol + hydrocodone on board (no, thank you) or his preference, to remove them as an outpatient "surgical" procedure at TCH where they would do conscious sedation.  Since our last cast/pin removal was a little traumatic for us all and we've pretty much already met our out of pocket maximum for the year (yay?), we opted for the sedation!  Similar to our other mornings, had to be there bright and early for a 7:30 procedure time.  For a kid who wasn't allowed to eat or drink anything, she was a doll.  Played with toys all morning, smiled and waved to the doctors, went to the nurse without needing Versed, talked their ears off all the way to the OR, went to sleep easily, and done!  Rather than starting an IV, they just used the sleepy medicine in the gas to get her to sleep, then gave her intranasal fentanyl and a shot of Toradol. From start to finish, it all took about 45 minutes!

She was a little disoriented and fussy waking up, but once we were discharged we got in the car and she fell right to sleep.  After a long nap she woke up STARVING and ready to show off her hand.  The hand and 2nd digit were super swollen and he told us to give it a little while before starting some at home PT to get the finger moving.  At first, everything looked great and we were super excited.  But now five days post cast removal, I'd be lying if I didn't say we're a little disheartened and disappointed.  Her surgeon said he was able to straighten the finger and reconstruct the ligaments and by adjusting things that way, thought he didn't need to remove extra skin from the clefted area. But now that she's moving her hand and fingers more, her tendency to open her hand in the same "V" way is still there.  YES, she can move that digit to midline now which she wasn't able to before and open the webspace between the thumb and 2nd digit, but more often than not, she still uses her little cleft for things.

So. Where does this leave us?  I'm trying not to stress too much about it and restraining myself from e-mailing him right away with my concerns.  Nothing we need to do immediately.  We go back in four weeks for a follow up and so we've just decided to let it heal and see how things go.  Maybe as she starts to use her hand more and strengthen that finger, things will naturally adjust?  We'll see.  Hoping putting her through another surgery isn't necessary, but y'all this girl is TOUGH.  She continues to amaze us with her resilience and we are so proud of our sweet little warrior.  And for some perspective, here are some before pictures of where we started! I can't believe the difference these two surgeries have made!

As always, thank you for your continued prayers for our family.  We LOVE our Team and are so thankful for you and your support!  I'll keep you updated in the next few weeks on her follow up with the surgeon and we've also got our round of specialists to start seeing again.  Looking forward to meeting a NEW geneticist that basically wrote the book (a short book...an article, really) on FDH, NEW ophthalmologist, NEW Nephrologist, and our same orthopedic specialist for her feet. ;)