Saturday, July 26, 2014

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.

Monday, July 21, 2014

Happy Match Day Abigail!!

We do not celebrate "Gotcha' Day" for Abigail for several reasons.  I detest the term "Gotcha' Day."  It is the day after Christmas.  It was probably the most traumatic and awful day of Abigail's life, including the day she was abandoned.  But we do make a big deal out of her Match Day.  

Me: Abigail, what is a Match Day?
A: The day you get matched to a family.  It is a big celebration.  You might get a present or a surprise or cupcakes but it is about getting picked for a family.

Pretty darn good, I thought.  Joesph went to daycare today so Abigail got undivided attention from both of her parents all day long.  At first she wished we didn't adopt Joseph so it could be like this all the time, like it used to.  But by the end of the day, we had worn her so completely out that she was begging for time alone and happy to have her brother back home.

When we were in China in May to adopt Joseph, Abigail really REALLY wanted a pearl necklace from the pearl market.  It isn't time.  So I made a cute little choker type of necklace for her using some left over pearls.  When she saw it this morning and how she looked in it she whispered "Wow.  WOW," very softly.

After that, we rented a horse for a 1-kid "pony ride."  It was 45 minutes through woods and fields while the horse was on a lead rope.  Abigail didn't want to get off.  The horse was named "Melody" and Larry and I can't get over how naturally athletic Abigail is at everything she does.  Her posture was perfect.  Absolutely amazing.  She was so at ease on Melody. 

 (The car ride home wan't too cheery because Abigail was just *so* sad about not being on the horse any more. It was like the stages of grief condensed into 30 minutes.)

I make her take a pic every year on Match
Day of her holding her Match Picture
She told me last week that she regrets ever saying
that she wishes for her own horse because now it
can never come true.  :(  

Next up, she picked lunch: the what and when.  That was followed by brownie making, eating a whole carton of raspberries, coloring, going to the library (where she wanted more books on giraffes- I love that she is so into non-fiction), and a trip to the frozen yogurt place.  

The evening ended with Karate lessons, her favorite dinner (dumplings), and reading books on giraffes.  

I could not imagine Abigail being matched to another family, and I couldn't imagine a more perfect kid for our first child.  We love her so much and she brings us so much joy.

Thursday, July 10, 2014

Hand-Foot-Mouth (Part 3, Day 6) Insidious Virus and Dumbledore

We can't get a good look in his mouth.
I hope it doesn't look this bad.
Days 4 and 5 were pretty rough, as more and more blisters were forming in Joseph's mouth.  He refused to drink and after dangerously few wet diapers we began force-hydrating him with pedialyte squirted into his mouth by me using a 5 mL dropper while Larry held him in a death grip.  I felt like Harry Potter pouring the water into Dumbledore's mouth as he screamed in Half Blood Prince.  With this method every 12-15 minutes all day long, he produced a few more wet diapers and we avoided a trip to the hospital for IVs.

Today is Day 6 and Joseph is getting some energy back, but is still hoarse from days of screaming.  He no longer has a fever, but is still in pain, although drinking a lot of milk on his own.  Sleeping is still a challenge.

Joseph has decided that it is very comfortable to sit in the refrigerator.  

The most insidious and evil parts of this disease are the following:

1. It puts little kids in too much pain to eat or drink
2.  It causes insomnia in little kids.  Evil, Evil, Evil.  Pure Hell.

Apparently, it isn't always this bad.  And the CDC describes it as "usually mild" but that must be when compared to ebola or something!

Larry and I are thankful that my brother and his wife came yesterday for hours to play with the kids, take Abigail to karate, have dinner, provide us with some adult conversation and watch the Netherlands/ Argentina game.  It was a mental health silver bullet for the two of us.  

Our old soul now enjoys sitting on the front porch swing,
waving at cars as they drive past, collecting leaves from the
red bud tree by the porch and making Larry hold them.

Tuesday, July 8, 2014

Hand-Foot-Mouth Part 2 (Photo Update)

I could only get these pics because he was
(finally) sleeping some.  This hand.  Just, wow.  
The foot sores hurt him so much
that he won't walk without screaming.
The blisters have not stayed on his
hands, feet, and mouth.  His legs, belly
 and groin all look like this too.

Monday, July 7, 2014

We did not see this coming, aka, coxsackievirus is a bitch

Poor Joseph.

He has these sores on his throat, in his mouth, on
his tongue, all over his palms, soles of his feet,
stomach, and legs, as well as in the "diaper area."

He got hand-foot-and-mouth disease.  According to our pediatrician, it is going around town fast.  Joseph is miserable.  Starting with Saturday night, he cries/ screams/ doesn't actually sleep.  He is in pain.  He is uncomfortable.  He is confused.  And there isn't much we can do to help him.  He won't even eat or drink, and those of you who know him, you know how much food he can put down in a day!  We are trying to get enough liquids in him that he won't end up dehydrated in a hospital, hooked up to an IV, which is not impossible at this point.

My wonderful mother-in-law, Grandma Kathleen to the kids, had to cancel her planned trip to visit this week because her weakened chemo-immune system can't risk the exposure to very contagious diseases.  Abigail cried when we told her this news.  

The real cherry on top of this mess:  Joseph is teething.  So he is drooling buckets.  This virus is contagious through saliva, among other things.  I cannot stress the bucketfulls of drool the poor kid is leaving in his wake, apparently full of nasty little microbes out to due in our whole family.  Abigail is finally wanting to play with her brother but we are trying to keep her away from the waves of drool lapping over every toy and shared surface.  It is an impossible effort.

I am hoping that:
1) Joseph can sleep and eat and be comfortable again soon.
2) No one else in our house ends up with this thing

Keep your fingers crossed for us.

A better pic of Joseph, during a more content time:
after stuffing himself all day on
his first 4th of July, hanging at the farm.