Cleft Palate Surgery

Joseph, as he literally ran all over
the pre-op wing in his hospital booties

Wednesday morning we left our house at 4:40 am to get to VCU's hospital in Richmond.  Joseph's surgery was scheduled to start at 7:30.  By 6:30, we were in the prep area meeting all members of the team, signing final paperwork, and getting last-minute notes from the wonderful Dr. Jennifer Rhodes.  The whole time, Joseph was a terror on two legs, running all over the place and if he was held or kept from running, he screeched and squawked.  I think that caused the anaesthesiologist to give him the happy juice sedative a little earlier than planned, but he got all loopy and drunk and yet was still pretty insistent that he should still be running around.  Then at 7:30, she (the anaesthesiologist) carried him down the hall, followed by other members of the team.

At 7:50, the ENT came out to talk to us.  She said that, given the amount of gunk she had to remove from his ears before she could place the tubes, Joseph was suffering from a not-minor hearing loss before the tubes.  Larry and I had been speculating that this was the case, given that he wasn't able to repeat many sounds we made or even register sometimes that we were making sounds.  

"Hey look at this"
Joseph's happy juice finally was taking effect

At 10:00, we met Joseph in the PICU with Dr. Rhodes.  We were so happy that she got a private room for him in the PICU for his recovery and stay.  The cleft was in his soft palate and was 7 cm wide, I think she said and she had to use some cadaver material to get it to close and that she had to work around an extra blood vessel that he wasn't supposed to have, but other than that, it went perfectly.  She was pleased.  Then she told one of us that we should go home and sleep and leave the other parent at the hospital until tomorrow; it was going to get bad sleep-wise after we got him home.  Larry quickly jumped on this chance and sped away, leaving me with our drugged boy.

The next 18 hours were a cycle of Joseph waking up, freaking out, pulling at his wires, yanking on his IV, and the nurse giving him an anti-anxiety medicine that put him back to sleep.  Our nurse, a mother herself, was amazing.  I couldn't have asked for a better, more caring, compassionate, going above and beyond nurse than Jenny P.  She really cared about Joseph and me, making him and us comfortable.  (I say "us" because he spent most of those 18 hours sleeping on me in some position or another.  It was like an international flight.)

First day home and he had to
vacuum the playroom.  

First meal back home:
big surprise, it is Ramen
This is about 28 hours after palate surgery!

Then, at 4:00 am, Joseph decided he was DONE.  He was sleeping on me belly-to-belly and he lifted his head and kissed me two times and smiled the sweetest smile at me, as if to say "Thanks for taking care of me." His IV was swollen so the night nurse removed it and broke the cycle of needing anti-anxiety meds to deal with the anxiety inducing IV and wires.  This was only possible because they were managing his pain only with Tylenol and Motrin by then.  He ate 2 pudding cups, 1 yogurt, and drank some juice.  He wanted to play.  He wanted to be all into everything.  This is when it got hard. He was still dopey and so when he tried to move any faster than a turtle, he fell over.  The staff wanted him off of the germy floor, but he wasn't staying seated or on the bed for another second.  That began a long 6 hour slog until discharge time where I tried to keep him from licking garbage cans, running into other kids' rooms, playing with the dirty mop water that the orderly was rolling down the hall, throwing his cream-of-wheat covered spoon across the room in protest of not being allowed to pour the cream of wheat on his head... you get the picture.  I spent this time telling everyone in the hospital that we needed the discharge papers getting written up NOW because we weren't waiting until 2 pm this afternoon to get this high energy kid out of the confines of the PICU.  It worked.  Larry finally showed back up after 9, Joseph was allowed to be discharged at 10, and a few minutes past, Jenny brought us the papers that could have been written on gold: the discharge papers.  It was wonderful.

Since then, Joseph has been mostly happy playing with his toys, playing outside, playing with his sister.  However, he is not sleeping.  Not enough.  Not even close to enough.  Larry and I are again split into 2 shifts:  he has the night shift and I have the morning shift, which isn't how these 2 teachers wanted to spend their summer break.  Larry finds himself up at odd hours in the middle of the night, playing with a wide-ass-awake Joseph, I find myself unable to get up and enjoy a morning run when I "sleep in" (as Larry calls it) until 6:30 because Larry needs to get to some sleep and Joseph is, you guessed it, still wide-ass-awake.

But keeping the important things in mind, such as we only had 24 hours in the PICU and some families have to see their kids suffering in there for days or weeks or months for various conditions.  We are lucky.  Also, we are hoping Joseph heals nicely, starts to get speech, and it feels like now he can really begin his life in America.

A few other thoughts:The two sweetest things happened during our time in the hospital together:  one was that as he came out of his haze, Joseph planted 2 sweet kisses on my lips when he woke up at 4:00 am and the other was that 2 times he called out "mum mum!" to me as he came off different sleeps and wanted me to hold him.
Abigail's palate was fixed in China. Who held her for 18 hours after surgery?  It makes me sad.