SOOC Saturday: In the ER

New pediatrician at the med center, plus extreme symptoms with a residual of autism, equals a day in the hospital ER.

Do you know how many times I have been to the ER/hospital over the last year for my family? Too way damned many, that's how many.

Let's just say it's averaged more than once a month.

James was a patient kiddo through it all. He hurt like the dickens and fought the nausea like a champ. He did his best to communicate with a team that was not only new to him, but also unfamiliar in dealing with an Autistic pediatric patient.

He was so good about being poked and transferred from car to wheel chair to bed and then back again. I am glad I was able to talk them out of the ambulance ride. That would have stressed him out so much more.

 Trust me, you do NOT want to be watching Dora the Explorer like this.

While I am very grateful that we have some form of medical coverage, the copays just shot our monthly budget and added to our credit card debt, despite the weekly chunk that is already taken out to pay for said heath care.

And while the ER rocked and both the medical and administrative personnel in both facilities were attentive and lovely to us all throughout the long LONG day, I now know that I will also need to change pediatricians for the kids. Some things you can just tell are into going to work the way you need them to, true?

Yes, this so could have been a lot worse. I am very thankful it was not. It came at the tail end of a really nasty week, however, and it knocked me for a loop.

Still, there were parting gifts:

This is our life, straight-out-of-camera (well, some cropping was done in the interest of privacy issues); linking to the SOOC action at Marvelous Mommy's blog.
Come on over to see more or join in.

ABCs of ER on VaCay

So, we went on this vacation ... and all I remember clearly now are the two hours on the phone with bureaucrats/advice nurses, followed by five hours in the ER.

It started oh so well. So well. James was happy and excited to be someplace new with all of his family. He loves it when we all sleep in one room. The sun was shining and the weather warm. He ate muffins! He had lots of new words.

Then there was a cough. Just a little thing. Then he couldn't settle down for a nap. So I took him for a swim with his sister for about half an hour. It was over 80 degrees in the early afternoon. I whisked both kids out and scrubbed them dry as quickly as I could, then we all went down for a nap. James woke up sick. Fever, hoarse voice, weird cough. Then he tossed his cookies. He seemed to feel better & slept some more. He kept down some water throughout the night and his fever went down a bit.

But by next afternoon, 24 hours later, he was back to tossing cookies, fever, and that weird cough. And listless. Time to call. Here's where it gets tricky.

We have an HMO. With services divided into regions. Bet some of you are already knowing where this is going. Call home region to explain situation and get a new medical number & phone number for region where we currently are. Triage a bit over the phone. This all after 10 minutes of button-pushing, listening to taped messages that have nothing to do with my current situation, and patiently jumping through hoops with a call center agent to reach said advice nurse.

So fine and dandy. I got the new medical number in pretty good time. I always think that if the elevator music hasn't looped on me by the time I hang up. I call the number for the advice nurse in the region where we are now. Oops. Advice nurse gave me the wrong number. I don't even know what it was really to, because I did not want to pay $9.99 so my cell phone could find out.

Called again to our home region to get real number for our current region. Good-bye, another 15 minutes. Meanwhile. James is moaning and hacking on my lap. The bathroom floor hath lost its charm. Thank goodness the tub is *right here* because he's not giving me much warning before doing the old heave ho.

Call the number and pick my way through the new phone tree/taped (irrelevant for me) messages/canned music/bureaucratic phone center agents. Reach new advice nurse. He listens and then tells me he can't treat my son over the phone (my eyes are rolling up and getting a fine view of bathroom ceiling at this point). He then tells me to call 911 for an ambulance.

Wait. What did you just say?

All I wanted was an urgent care appointment (if available) or a recommendation for where to take him. So, there are no urgent care appointments. Okay, So that means the ER. Which med center is closest to us? Please bear in mind that wildfires have been springing up and raging out of control all day here. The air quality sucks and besides the fact that my son's breathing is not normal, going into a fire zone is just plain stupid, not to mention really dangerous. He says if I am not going to call 911 that I should go to the nearest med center. Okay, brainiac, I am not from around here. Where would that be? He gives me a location. I say thanks and hang up. I plug in the address of our hotel and the med center in Yahoo Maps. Goddess, how I love the internet in times like this. Daughter is awake and whining.

Yahoo tells me that the med center is right in the fire zone. Oh, and the two freeways I need to take to get there are completely shut down. Thank you, TV and voices on the phone. So I phone back, madder than spit. I am told by a different advice nurse to call 911. I explain this will freak out my son and make him even sicker. The first med center is in a fire zone. Where is the next closest med center? The nurse explains I need to take my son to the nearest medical center's ER. Yes, which one??? Daughter whining. James throwing up. Me gritting teeth. The nearest med center. He needs immediate care. STAT.

Why the freak didn't AN#1 (in this region) just *say* so? And AN#2: Can you tell me where that would be? This is starting to feel like a sick version of The Dating Game.

No. (That would be telling, #6)

Surprise. Not.

However, AN#2 really was trying to be helpful. She reminded me my hotel had concierge service and could help me. Which they did, bless their hearts. Christine, I will remember you with gratitude forever.

And I have to be honest, UC Irvine was probably the best place to take James. Not only were we completely triaged within 10 minutes of walking in the door (which has never happened with me before), James received excellent care during his entire 5-hour stay.

Final findings: dehydration (over 600 units saline solution via IV drip), croup (my first experience with it can you tell?), and pneumonia (for the bonus points). He had steroids, a 1-hour cool mist treatment, anti-nausea meds, and the first dose of antibiotics. My poor buddy. Thank goodness I brought his blankie and enough brain power to recite his favourite bedtime stories. By the time the monkeys were doing their stuff in "Caps for Sale," James was alert enough to thump his feet along with the story. I was never so happy to see a foot thump.

James is fine now and this is his second day back in school. Wish I could say the same!

Morning at the Med Center

After another rough night and early morning, I brought James in to see the doctor. I wanted to rule out everything else (e.g., ear or throat infection, stomach bug). Because I wanted one of the first appointments of the morning, we saw a new doctor. She introduced herself to us and told me she'd reviewed James' chart as well as the information coming in for today's visit before asking me about my concerns as she checked James' breathing, ears, and throat. She was very calm, thorough, and quick. She did however, have concerns it might be appendicitis.

Oh God. 

This, this, this, and this flashed through my mind, and I teared up.

I explained as calmly as I could to the doctor that we'd been this route before, and it was rather traumatic and we really didn't want to do another ER stint unless it was absolutely necessary. I give her all kinds of kudos because she did make it a much more positive experience for us, while still taking steps to make sure we were not dealing with appendicitis.

First, she ordered an x-ray of James' digestive system, which could be done on the same floor of the building. She had a wheelchair brought so that James would not have to walk. The x-ray was quick and efficient. James even perked up because he thought the technician was cute. We were soon back in the waiting room, and the new doctor saw us before I could get halfway through a short Winne-the-Pooh book.

This makes sense if you read down to the end.

Next, she showed us BOTH his x-ray, and answered our questions. Because yes, James was interested and asked "Is that me?" I loved how she communicated with us. The image showed some constipation and air in his intestines, as well as a stomach full of even more air. So the diagnosis now leaned more towards constipation. The doctor offered having an enema done down the hall in the Treatment Room and then recommended getting blood drawn to definitely rule out appendicitis. That being far preferable to an ER trip at another facility a mile or so away, I agreed.

Well, the enema triggered nausea and yammying. Not much happened at the other end. I did, however, manage to get a urine sample. There was a bit of a mess. How weird am I to be happy that it happened in a med center and not the car or our house? After it was over, we had no BMs, but a much more relaxed guy.

I did a quick emergency call to his Nana to please bring clean jammies and underwear. While we waited, James was able to lie on a padded gurney and watch a movie, covered by a beach towel from home. The doctor came back to check in. She told me the urine sample had no indicators for appendicitis and asked James to jump up and down on his toes, which he did. She then told me she didn't need a blood test, that James would not have been able to do that if he'd had appendicitis.

I almost kissed her feet, I was so happy. Everything was checked out with a minimum of fuss and delay and a maximum of compassionate assistance. James could go home to rest, and they even sent some suppositories home with us to try later tonight and tomorrow. Good Lord, I hope they work!

This looks like a cool x-ray app for the iPad - I think we'll check it out. Click the image above for more info.

SOOC: Intense

The past few weeks have been extremely intense. I think the picture from this particular week will reflect some of that.

ER visit #1

Wettest March in 8o years; our garage leaks

ER visit #2

New use for walkathon shirt -- staff can "see" autism and adjust accordingly

Sick, better, sick ... planning for a funeral ... being alone ... sun and storm, that's life

A good way to remember those who are gone

Preparing for the funeral

Reception with family and friends

Long drives in stormy weather

Science Fair delight

Odd moments of peace, calm, and renewal

A lot to share with the SOOC action at Marvelous Mommy's blog. Visit her site to see more life, straight-out-of-camera (SOOC) or share some of your own.

Long Night in the ER (Day 5-6)

Open Letter to Emergency Rooms: We have to stop meeting like this. It's wrong, wrong, wrong and I want it to stop.

I never intended to spend so much time with you and have you reach so far into my life. But you have. No one can save lives like you, ER; you make life and living seem so precious. I've met some amazing people through you and had to stretch to keep up with your bursts of frantic energy, shifting teams, and constantly change of game plans. My life will never be the same after being so much with you recently.

I will always remember our special times together, especially late at night. The waiting during those fantastic hours between 2 and 4am, where time seems seems slow and the world narrows to just the two of us. The random weekends and odd vacations cut short, where we had the unscripted rendez-vous.

But the sleep deprivation and anxiety are wearing. I think it best that we just be friends, and see each other in a much less frequent basis, in future. Can we just try that, please?

Yours, sincerely - Me

P.S.: Yes, we are back home, and intend to stay there together.

Take Me to the River

My mom and I took the kids to play in the River this morning. My daughter has been there before, but this is James' first time playing in the water. He really liked feeling the water on his legs and getting cooled off on a hot morning. He threw a few rocks, and really got into a game with his Nana. He stood upstream and emptied a bucket of water on himself. Then he'd laugh and throw the bucket into the current, where it would be carried downstream and scooped up by Nana. Lather, rinse, repeat!

He was really looking around and taking everything in. He called out "bird" when a backbird landed nearby on a log. He went "Qak, qak!" at the ducks flying overhead. And when his sister exclaimed "fish!" he did too. He sang his "walking, walking" song as he plowed through the water. He also loved walking through the trees and grasses to get to and from the beach. I am so proud of the way he totally jumped on board and explored everything around him. And how fortunate that he seems to have grown out of eating rocks!

Up until his nap time, I kept hearing the occassional exclamation of "Wah'er! wah'er!" I am looking forward to summer!

Autism: Can't Leave Home Without It

We're back! I'll be recovering through next week.

James developed Pink Eye and the Summer Flu while we were on the road. While I am thankful there were no horrific constipation issues or ER visits, managing James' testing behaviours and both kids' sensitivity issues while being the single parent/caregiver 24/7 for over a week nearly pushed me past my limits.

For the first night in a long time, I can sit down and get some observations down:

• Don't keep James up past 9pm. It's not pretty the next day, especially if we're headed to some place like Disneyland (good luck with that because fireworks from Disneyland start at 9:30 and can be seen and heard from our "Letter Q Hotel").
      
• While not ideal for getting a good night's rest, it's sweet to sleep next to my buddy (and a good safety procedure, as he can still roll off a bed). He starts off hogging the bed diagonally but can be nudged over to one side. He still looks like my little boy while asleep.
       
• Bring and use more hand cleaner. James still mouths handrails when maxing out from sensory overload. Also? He's now using the boys' bathroom by himself. Hand washing is vague and inefficient, plus we still have that wiping issue.
     
• Writing letters and playing Angry Birds really help focus him, even when he's being a King Stinker. Try to give him these breaks *before* he gets too naughty and lands himself in Time Out in the stroller or facing the wall, wailing and melting down in public.
        
• James loves to help -- let him take bags to help load/unload the van. He's good at it and it gives him exercise. Ditto with cleaning up.
      
• Remember that special attention/time with big sister is more important than ever. Let James watch TV or play a little Angry Birds on my phone while I take time to brush out and style her hair or read out loud to her and ask what she's enjoy doing on vacation.
     
• James' gag reflex is getting worse. Don't try to make him be quiet when he's trying valiantly to not throw up. The anxiety triggers an awful mess. Also? he will always say he's feeling fine, even when producing evidence to the contrary.
     
• Must wrap son with a beadspread like I used to with feral cats. It's the only way I can pin him on the bed and keep his hands and legs from interfering with getting antibiotic eye drops in his eyes.
     
• James will now display behaviours that are more aggressive when he is frustrated/upset.
  -- He screamed so loudly in a food line that he startled people near us. I saw those
      eye rolls and stares.
  -- He bit a small toy in half when I physically removed his hands from the bin
      (where he'd been furiously messing with them in a temper) and instructed him
      to stand still, and
  -- ... he tried to swipe a group of ceramic mugs off a display shelf.
      The sales lady was very nice but he earned that little swat on the rear,
      order to make an apology, and little chat with Mom in the middle
      of the store.
  Not yelling or showing despair were the two best things I could have done and they were effective, but dang! I wanted a drink after. Yes, I am in charge -- don't even *think* of trying that one again, because it's *not* acceptable. Let's go some place quieter and all calm down. 

Do they have Calm Down Bars? They should.
    

Night Swimming

It was so hot today that I took the kids swimming tonight at 8 after dinner. It was a fantastic experience!

The sun was down and the blue sky was swooshed over with dramatic clouds that threw back orange-pink light on us. The air was warm and still. The water was delicious on our skin. The quarter moon was soft and misty behind some gauzy clouds. I felt like we were in a big Maxfield Parrish snowglobe.

It was one of those nights I hope I'll always remember. Especially the looks on the kids' faces -- total amazement and delight.

This is James' first time in the pools since last year. I think he will like spending more time there and in the River.

First we stood on the steps of the middle pool, and then headed to the wading pool. His sister was very good and gave him a kick board to play with. He immediately called it a boat and put both hands on it, getting more into the water. James' words for this outing: wa'er (water), 'im/s'im (swim), boe (boat), moon, boo (blue), ah-pen (airplane). He put the words water and boat together! He leaned over and got his arms wet up to his elbows, and he brought his face so close to the surface that he got water on his cheek. He learned to get out of the wading pool by himself. He would walk carefully to me and then launch himself into space so I could catch and lower him back into the water. We will work on his re-entry!

I've Got My Work Cut Out For Me

Well, I'll know what I'll be doing today:

Note: Allergies and stomach flu do not mix well.

I had to give James some of the anti-nausea pills that the ER doc gave me the last time he started yammying and could not stop, once started. The climax after that was pretty awful.

Then we both got 3 hours of sleep.

This morning he's taking on electrolyte water (I love you, Trader Joe's), blowing up the Death Star (go, you Angry Birds!) and has kept down 2 yogurt tubes.

Meanwhile, I love my washer and dryer.

Special Exposure / Wordless Weds: Pause

I looked through some of the images I'd taken last week, and was reminded of a drive I took with my daughter this afternoon, during what turned out to be my one lull between trips to the ER with James. Which came after hearing about a death in the family.

I am so glad we took this drive up that twisty country road. I can't think of a better use of this quiet time between emergencies than to spend time with my other child, breathe, and admire a bigger picture:

For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.






               and ... Wordless Wednesday

Gifts on a Spectrum

It's Black Friday, and time to think hard(er) about gifts for the kids. Especially as big sister's birthday comes right before Christmas and James' is shortly after New Year's. Aaaaaand the property taxes are due right before then, so we really need to shop wisely because there's not much moolah to spare.

Add to that the fact that finding presents for James is a challenge. I've seen him rip and eat books, puzzles, and flash cards. He looks politely at cars and trucks, for the most part. If he can push buttons and have things light up and make loud noises, he's all over it for about 5 minutes at a time. Unless it's driving me crazy or waking the family, then make that 15 minutes, minimum.

He loves computers, clocks, and CD players. He also loves to rend them into pieces, if given half the chance. My little boy, the Destructor.

Some of the best toys for him have come from therapy sessions. We've gotten more mileage from an ice cream scooper and tongs with a bowl of cotton balls than the expensive LeapFrog read-along electronic gadget. It took 3 years before he became engaged with the super LeapFrog magnetic fridge Word Builder.  I could go on .... and end up with the sad memory of James' Christmas just before he turned 3, when he looked at the presents, but did not get excited about them, let alone want to open them. I seriously cried that Christmas morning because he'd recently been diagnosed, and this was like a knife in the heart.

But things got better. James became more engaged, and this year he's reading, doing math, and started some imaginary play. I've scaled back my expectations and become more philosophical about what will make this child happy.

I'm still thinking of toys, however!

So I was very happy to see this Special Needs Toy Guide by Emily Vanek, mentioned in Five Minutes for Special Needs.  We've already had good success with a number of items listed in her guide. There were some misses too, but that's because kids are different and special needs means, well, the antithesis of "one size fits all."

Oh yeah - he loved these things for years!

Here's what James has liked: Connect 4 and the piggy bank (although we just used a regular one that we had lying around the house). Sensory balls and ordinary balloons have been huge hits. My husband found one of those Fischer Price play kitchens at the Salvation Army and brought it home for our daughter.; both kids ended up loving it. James also loved the Singing Popup character toys.

He did not care for the large building blocks (or wooden blocks or regular Legos). He likes Play Dough but starts to crumble it all over into tiny bits. It's just not work the clean-up for me.

I think I'll take a more focused look at what James has liked. That will not only help me zero in on what might be good to get him, it could also help others.

What kinds of toys have been great for your special needs kiddos?

The Power of Blankets

Every since he was old enough to track familiar things, James has been attached to his Bear Blanket. It was a hand-me-down gift from a cousin. What a wonderful gift it's been!

That Bear Blanket has seen Disneyland, ER rooms up and down the state, traveled through Oregon and Washington and visited the MIND Institute at UC Davis. It has soothed him through many an illness and helped him go to sleep at night at and away from home. It must always be positioned just so, with the red border tucked under his chin at bedtime.

While James does not carry his Bear Blanket around as much as Linus did his, he does like to wrap it around his head, and sometimes drape a chosen person with it for a big hug session.

I know most 8 year-olds don't carry their blankets around anymore. But really, when I see him smile like this, I just don't care.

And you know what? Blankets are awesome. The people behind Project Linus know that. We've made a couple of fleece blankets from a kit for them. Check them out, and spread some comfort and cheer.

Oh Lucky Little Man

James celebrated the end of Daylight Savings Time the way he has the past three years -- he got up 2 1/2 hours earlier than usual. I was up at 4:45AM. That kid is lucky he is cute! He inhaled a lot of food for breakfast too. He is over 40" now, and I guess we are in for another growth spurt. Yikes!

His new favourite thing is watching the Disney Sing-Along video shot at Disneyland. I like this so much better than Caillou! We watched it 3 times today. I also took him out in the back yard once the sun rose. He explored a lot and had lots to offer talking-wise: "leaf!" "Oooh! Whassat?" "kee-tee" and "I want DADDY!!!" That brought a smile to someone's face!

He loves playing with Play Dough. He and his sister shared a big activity barrel of it for almost 45 minutes this afternoon. He rolled out the dough, asking first for the roller ("Roh-er?" Pease?") and then cutting out as many purple stars as possible, before mushing it all together and starting again. Both kids also spent some time playing with their musical toys with their dad. James flipped through many books. He loves one from Switzerland, from some reason. Bern is his muse, I guess? And it has been pouring cats and dogs outside, so we love the fact that he still uses his trampoline. Go get out that energy, James! And please, have pity on your poor mother and sleep until at least 6:30 tomorrow morning!

Play Time

James has been really starting to play creatively. Right now he likes to pretend he's a rocket ship, and count backwards from 5 to the "Blast off!" He swoops around the house, calling "Beep-Beeeeep!" and "vroom!" Airplanes continue to delight him, and he will stop what he's doing if he hears aircraft overhead and say "Oh. Eees airpane!" or "Hey, Mommy. Is heh'cop'er!"

The one that cracks me up, though, is when he pretends to be a dinosaur. He can produce this *sound* from deep in his chest to make dinosaur roars, all with the most delighted grin on his face.

If his sister isn't helping his whoop it up, then Caillou is. Just when I thought we had finished with that cute little Canuck, he delights again.

Road Trippin'

Yay, we got to take a few mini vacations! My husband is still saving up vacation days with his new job so we made weekend trips to Santa Cruz and Southern California. Both trips involved major time at the beach. Both kids loved it, and by the time of our last day at Newport Beach, James had started to bat away our hands so he could stand alone n the surf, and brace his legs against the waves.

He didn't mid getting sandy, but he remains a picky eater. After some frustrating tries to get more than milk inside of him during the Santa Cruz trip, I made PB&J sandwiches for James to take to SoCal. My husband rolled his eyes a bit, but I've seen the prices for PB&J on the menus -- $3-7, and there's no guarantee that James will like the (1) bread), (2)PB, or (3) jam/jelly.

They home-made "Shamiches"? So. Much. Easier! James gobbled them down. And thank goodness Trader Joe's sells watermelon precut, in a nicely sealed plastic bowl. Money well spent and it kept James happy, still, and hydrated at the beach.

What a nice change for both kids to jump, run, and yell as loudly and long as they liked! They are both really good travelers on long car trips, and it feels good to having something worth their while at journey's end. James kept up his words with "bird!", "wah-er!" (water), "Mennon!" (watermelon), "bwoo!" (blue) ... and "haycopper!" for when the helicopter buzzed us at the Newport shoreline. He also likes to count. He can get up to 14 and count back down from 5. He can sing the A-B-C song, but doesn't really know the letters.

Magic Marker Monday: Red Journal

Just before Winter Break, James brought home his writing log, which he calls his Red Journal. Considering he had trouble getting 4 letters on 1 page of paper last year, this is a Magic Journal for me!

Baseline, from September:

We have our puzzling days:

I see his teacher and aide's names there ...

 ummmmmm ...

"At school, the lights were not on. I feel bored. I went to speech with Jack. We watch -- "
 er, um, cheeus cager goose? This will keep me awake at night.

The ones that make my heart ache a bit :

Although I have to take the "worried" with a grain of salt, because:

Even though he writes he's mad, he enjoys the spelling practice at home and this is his usual result for spelling tests:

I also know that James reverses his pronouns (mostly on purpose, I believe) and mispronounces his own last name. He gets a big kick out of that, go figure.


For more great masterpieces or to share some of your own,
visit 5 Minutes for Special Needs for more Magic Marker Monday.

                   
 
(and yes, I know it's Friday -- it's been a week)