Sleep Terrorist Update

Most of my readers are familiar with the daily, exhaustive struggles of living with our little Sleep Terrorist.  For those of you who aren't, he falls asleep between 7:30 and 8 pm.  He often wakes several times throughout the night before popping up, wide awake in the 4 o'clock hour.  I mean Up For The Day at 4:something.  It can be 4:10 or 4:23 or, when he is feeling generous, 4:54. Even on the night of the DST time change, we thought we were guaranteed one "sleep in" as his body slept to Old 4:something, it would be New 5:something and it would be like sleeping in, except on that day he awoke at Old 3:50.   
(And sure, several people think they have the solution.  "Longer naps!"  "Shorter naps!"   "Earlier bedtime!"   "Later bedtime!"    "Weighted blanket!"   "Essential oils"    "Melatonin drops!"   It is amazing how many people feel the need to tell us what the Magical Sleep Bullet is just because something worked for the non-adopted child of a cousin of a neighbor of an imaginary friend.  Sometimes, when a person is going through something, they just need someone to listen, nod emphatically, not preach and say "Damn!  That sucks!"    Know what I'm sayin'?)  

A week ago, Lar was sick/congested so he slept in the guest room and somehow (a finely tuned toddler telepathy I guess) Joseph discovered that (A) there was a vacancy in our bed, and (B) he can climb into bed with me while I am sleeping in the middle of the night and I wouldn't even know until I get accidentally toddler-kicked.  

And while he is cuddly, that wasn't sustainable.  Since then, we have been working with him at bedtime.  We practice "waking up" and checking the Bunny Clock.  We practice "going back to sleep" when Bunny is still sleeping and we talk about waking up Mama and Baba if the Bunny is awake.  (The Bunny is set to wake up at 5 am.)  I said to him "Do not wake up in the middle of the night and climb into bed with Mama.  Okay?"  When I said that, he got very sullen and just hugged me and buried his face in my neck and wouldn't let go.  The next morning he woke up at 4:something but laid in his bed crying quietly, staring at his Bunny like I told him to do!

Eureka!  We had suspected that he understands everything, even though he isn't able to speak much yet.  And sometimes he even wants to please us!

But today, this little bed-headed Sleep Terrorist gave us a delightful surprise.  

He not only slept straight through the night, but he didn't wake up until 5:20!  The little guy received so much positive reinforcement for this miraculous feat.  Maybe it was the new Elmo pjs.  Maybe it was all the fresh air and sunshine after a long winter.  Maybe it was an isolated incident.  (No!  Say it ain't so!)  We are being cautiously optimistic that maybe 5:something could be our new normal.  But I won't get my hopes up either!

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.

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.

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.

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.

Sunday Snapshot: Epic Parent Fail

Okay, I think it looks worse in the picture than
in person, but you get the idea.
I swear that we put sunscreen on her.
I think the problem was that she went right into the
pool after we slathered it on.  Truthfully, she has
never burned before but I feel like the worst mom ever.