I Over-Reacted. She Retracted. - AND We're Home!

Over-react?  Who me?  Thanks to my Momma I'm really good at it!  (Much to Lon's dismay!)
But, again, I plead "temporary insanity", due to the stress over a sick child...and major lack of sleep!!!

When Dr. Glew came by the next morning and did her physical exam and assessment, and consulted with the rest of the docs, she retracted her idea.  She is on board with the rest of the team, and they are all leaning towards it being REFLUX.

Eli had the Endoscopy Friday morning at about 8:30.  The pictures showed mild to moderate Esophagitis.  And his valve between stomach and esophagus is a little loose.  They've taken him off Prevacid...and he is now on a new drug called Zegerid.  Let's hope it works.

My "mommy instinct" says such a simple solution is not the complete answer to the major issues we've been having for four long months!

Lon and I are now approaching the idea of him getting the Nissen surgery, with a new attitude.
Surgery is a horrible thought for us.  It will be a very hard and stressful stay in the hospital, because Eli will be miserable during the healing.  Then a long recovery at home.  He is under-weight as it is....and we don't want him to lose more.  BUT.  If it will make all the pain and discomfort go away...we will have to do it.

Right now, they want to try the new drug for a few weeks and see if it gives him relief.  So that's what we'll do....while we pray hard for good results.

We drove home Friday afternoon.  Eli slept most of the way.  He woke up just as we got off the freeway.  He sounded awful!  His throat is really dry and sore from the intubation (breathing tube) while under anesthesia.  We got to our driveway, but I was scared to go home because I didn't want him to go into respiratory distress...and have to make the long drive from our house.  So, we turned around and went back to town and our local hospital.  We just weren't sure what to do.  So we sat in the parking lot for a while.
I called a some friends, around 6 pm, who live about 5 blocks from the hospital, and they graciously welcomed us into their home, with a moments notice, so we could keep watch over Eli to see how he'd progress....or not.

Eli fell asleep on their couch at 6:50 pm.  Now what?  :)
So, Andy and Jan offered us their family room for the night!  (Thanks guys!  We greatly appreciate the love you showed us last night.) We made Eli a bed on the floor, I slept on the couch, and we were WAY more comfortable than staying at the hospital for observation!  Mr. E decided to wake up at 3:00 am!!  After a failed attempt at getting him back to sleep, I called Lon, and he came and took us home.  We were home by 4:30 am, and at 5:20 I started feeding Eli, via syringe, slowly while he laid on the floor.  (We do this often, and don't have any problems.  We're getting worried because he hasn't eaten for three days!  He was on IV fluids)
So, the first liitle bit of food caused him to reflux, and I'm sure burn/irritate his sore throat!  It's been a hard morning as he's got a lot of stridor going on.  His throat is tight, and feeding continues to cause reflux....causing more stridor....etc...vicious cycle.  Dang it!

But, the boy has gotta eat...so I've now been holding him for over 2 hours, he's taken a couple little naps, and we've got his feeding pump at 1 oz an hour....so far so good!

Thanks to Lon, I got a three hour nap this morning...and got to shower.  I feel much better now that the hospital cooties are off!  sorry this post is so long.  A lot has happened and I don't want to forget anything....as this blog serves as my journal!  :)

Thanks for all the prayers, words of love, and happy thoughts!
Lon, Amy, & Eli

Good Morning, Sunshine!

Eli woke up much happier and calmer this morning.  I am so glad.

His procedure (see previous post) is scheduled for 8:45.  I was a little nervous about him waking up at 4:50 am, because if he was as miserable as he was yesterday morning....it was going to be a long four hours.

I've processed last nights information a little more, and I talked to Lon.  He gently reminds me to not put the cart before the horse.  I know...but just hearing the "T" word...makes me sick. I have video for the doctors to review today, to see if they are on the right track.

I'll continue to keep you posted as I can...  Stay tuned...

Thanks for all your support and prayers!!!

She said the "T" word

I just spent 1 hr and 20 minutes with Dr. Glew, a Developmental Pediatrician.  We talked about a lot.  She seemed to be the most knowledgable person I've talked to yet.  Every other doc has their specialty...but she works in the clinic that specializes in kids like our Eli, and is experienced in lots of areas.

After much discussion, I told her about the problems Eli has been having breathing.  I say it looks like "apnea" while he's awake.  Our pediatrician at home said,  "in apnea they turn blue.  These are just breath holding spells."

She said the "T" word. 

Tracheostomy.

THAT IS THE ONE WORD THIS MOMMY NEVER WANTED TO EVEN HEAR!

I had a little melt down.  I'm very sleep deprived and a little emotional.  I feel like I cannot handle that if it were to come to that.  I said, "What do we need to do to rule that out?"  It's going to be her focus tomorrow.  She is quite concerned.

Please pray that she is wrong.

Me and God are gonna get real close tonight.  Won't you join me?  Petition him on my son's behalf.
Please.
Eli needs prayer more than ever.  I need prayer more than ever.  I feel like I want to puke...

Endoscopy Has Been Scheduled!

They are going forward with their reflux ideas, and have scheduled an EGD ( Esophagogastroduodenoscopy ) for Friday at 8:45 am. All anesthesia carries the possibility of risk, but because of Eli's issues....we are a little concerned. I know God is in control, and I pray that we are going to get solid information that will help us figure out what Eli needs to get better....but I'm still human...and I'm just worried about it all.

Have you ever handed your baby over to an anesthesiologist and watched them walk out of sight?

It sucks.

Eli was only 5 months old when he had his g-tube surgery.....and that was hard enough. But, you know what? I'm even MORE attached to him now! :) I know I will be a blubbering mess in the morning.

Here is a picture I took this afternoon...before he went to sleep.

What do you think he's thinking?

Leave your thoughts in a comment...I'd LOVE to hear from all of you!

Eli Update from Children's Hospital

We got to the ER at Seattle Children's Hospital, on Wednesday at 4:15 pm.  They took x-rays and blood work.  Nothing showed up.  Same stuff we'd already had done in Yakima, but they have to follow their protocol.
Finally got up to a room at 10:15 pm.  It was a long night.  We are on auto-pilot today.

We woke up this morning to find a massive snowstorm hit Seattle!  Seattle!  Of all places...and times!
Lon went home last night around midnight....as he needed to go into work this morning.  He got back this morning by 8 am.  He got about 1 hour of sleep....and had to drive in the storm.  God gives us strength when we need it....it's the ONLY way to explain how we are functioning.

Eli is on lorazepam....and it drugs him into a stupor.  He slept all night!  Even slept in!  (If you follow me on Facebook, you'll know how crazy early our mornings are!!)  Then was awake less than two hours....and fell asleep again.  He's awake now and doing Ok.

Doctors made their rounds, and the Attending came in to let us know the plan for the day.
We are waiting for a GI doctor to come and visit.  They are going to pursue reflux issues.

If needed, they'll call Neurology....but at this point it doesn't seem to be seizures.  Praise God!
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We have a roommate.  A precious one month old baby that really needs your prayers!
Meet:   R Leriah and her Mommy...

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So as we wait around for tests and such....here is what Eli is doing:

Listening to Elmo and the Orchestra on his MP3 player...and watching Finding Nemo on the DVD player.

I'll update as I know more.

Don't forget to add us to your prayers chains....we need all the help we can get!

Thanks!

Bailey Kazoo

She's a papered Seal Linx Point Himalayan Persian.

This is Bailey.   

Her papered name was Kazoo - so we call her Bailey Kazoo...or BK....or Bales...or Belly Button...

She was an inside cat for 12 years!

Last summer when we moved, we decided to let her outside...and she loves it!!!

She loves exploring in the trees, pooping in the grass, laying in the sunshine :)

and running!!  I love to see her enjoying the outdoors.

We desperately would love to find a new home for her though. 

She is a very social cat, not a lap cat!, but she'll follow you everywhere...because she just wants to be by you.  We just can't let her in the house anymore.  She got very jealous after we had other cats in the house, and she starting going potty in the house :(

She really needs to be the only animal in the house. 

Do you know anyone who could love on this beauty for her last years?

My Baby and Me, a Cute Little Octopus, and Dog named Cliffy

I've ended up making it a tradition for Eli and I to have a little "self-portrait" photo shoot together on Valentine's Day.  Since we don't really get our picture taken together unless I take it...it's special to me to have them each year to look back on, compare, and reflect. 

Can you believe I don't have a single picture of us on a Mother's Day!?  Hello!!

Each time a do a photo shoot, I probably take at least 20 pictures....in hopes of one or two "good" ones.

WELL, TAKE A LOOK AT THIS:

Seriously, folks.  Could he be a model, or what?

This is one little handsome dude God created right here!

(But, why does the camera have to not focus on such an amazing shot, though?  Grrrrr!!!)

Hugs and Giggles.  Who could ask for more?

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When introducing a new toy to Eli's World, we usually play with it just a little at a time and let him get used to it slowly.  He's never liked a toy the day we brought it home!  Then we place it on his blanket...so he can see it often....and roll over to touch it if he chooses.  We bought the Octopus for him in October.  Just this month he's decided to start grabbing onto one of his legs....and just hang out with it. :)  Is that cute or what?
Eli doesn't usually hold on to anything longer than a second or two.....but with Mr. O - he'll lay there like this for a few minutes!  It's a pretty cool toy.  If you press the top of his head he plays songs....and then each leg is a piano key.  Hopefully Eli will get strong enough to squeeze the leg and hear the sound it makes!

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And then there's Cliffy.

If you'd like to adopt him he's available through Wags to Riches Animal Rescue.

Valentine's

New Blog Background & Header

I finally learned how to create a new background AND header! Woo Hoo!  I am having so much fun.

It seems, however, that depending on your screen resolution it may not look right. Sorry for that!

This color palette is my FAVORITE!! I'll probably be tweaking it often as I learn new tricks in PhotoShop Elements. What a great program! I can't believe I waited so long to buy it!

Have a wonderful day!

Physical Therapy Fun

Last week in PT, Laura and Eli sat in the ball pit and played.

This is a swing, believe it or not.

It's a large platform base with an innertube on it.

There's a boppy and a seat base in the middle,

which is then covered with a sheet.

Eli LOVES swinging in this.  The faster the better!

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Any idea why our cat "Little Girl" (I DID NOT name her!)

likes to sit on this tote and face the corner?

What a weirdo!