You know you’ve spent too much time in hospitals when you dream that Emma has surgery the next day and you don’t  wake up in a cold sweat while hyper-ventilating.  Rather, I woke up and wondered if she really did have nodules on her vocal chords that needed to be removed.  Think I’ve been reading up on Adele much?  Fortunately, I remembered that, no, she doesn’t need surgery for this, and I went back to sleep.  The end.

Getting a visit from a therapy dog during her last hospital stay.

You know how the saying goes.  This will be short and sweet, as I need to get to the hospital early today.

Emma’s taken a step or two backwards.  Yesterday she needed a blood transfusion because her white blood count was low.  After the transfusion finished, we noticed a few symptoms (of what, we don’t know) starting:

• Facial “droopiness” on her right side…reminded us of the stroke she had when she was 2.
• Unusual movement with her tongue, which I think is new seizure activity.
• A fever of 101.5 that was stubborn to break, but finally did.
• Uncomfortable and becoming angry.  She hadn’t been like this yet.

We’re not sure what these symptoms point to.  But because of her history, today they will do an EEG and MRI on her.  The MRI is a biggie for a few reasons.  It requires general anesthesia which is risky with her condition anyway.  Then you factor into that the recovery.  More than anything, we are checking for possible stroke (although they think it’s unlikely) and just to see how it compares to the MRI of ’09.  The EEG will check for new seizure activity.  Are we seeing a new kind of seizure?  Seemed like that yesterday.

What I’m hoping: this is all just worry and she was super-tired from yesterday.  We had quite a few visitors, and perhaps she didn’t get the rest she needed?  Last night, after I left, she got a sandwich to fill her belly and a good dose of morphine and/or valium.  Brett wasn’t sure on which one!  Either way, it’s a cocktail for a good nights sleep!  I’m headed in early so I don’t miss the visit with the ortho, anesthesia, or anyone else.  I’ll keep you posted.

In the meantime, please continue to keep her in her thoughts!  And pass this on to a prayer group or church if you have one.  The more prayer warriors on Emma’s side, the better!  She will get through this!  It’s just not as  quickly as we had hoped.  Thanks to my faithful blog readers!

Emma is sleeping peacefully next to me. Brett is sleeping peacefully next to me. Her surgery went beautifully. They were right on time and the surgery took the expected about of time. The hope looks great from the fuzzy x-ray we got.

She woke up from recovery in fine Emma fashion, wanting to go right up to her new room! Once in her new room, she wanted the tv on and lunch to be delivered. The food hit the spot and she was out as Grandma and Grandpa were leaving. I’m not a napped by nature, so snoozing in the hospital is not really and option. Perfect timing to let you all know her status!

Her pain is being controlled by epidural, yay for those! I will keep you posted on her progress tonight. Thanks for your positive thoughts and prayers. They are working!

To say that we’ve returned back to “normal”, would be inaccurate.  Upon my return, I was hoping for only the jetlag to be an issue.  Emma’s behavior, however, has been the biggest issue this week.  I wasn’t sure if the medication stopped working.  I didn’t know if she was adjusting to me being back home (she has a hard time adjusting to people coming and going, least of all Mom).  I didn’t know if it was thoughts of her upcoming surgery.  Brett and I sat her down one night on the tail end of a huge temper tantrum and the truth came out.  Emma is scared about her surgery and hospital stay.  <heart breaking>  We talked with her and told her it was okay to be afraid, but that mom and dad would be with her the whole time.  She’d get a brand new room in the new tower.  I was able to get online and show her pictures.  And I told her that on Friday when we went down to the hospital for pro-op blood work, that we could go see the new room she’d be in and the playroom.  We knew she’d be on the 8th floor.

Friday came, and I took on the task of bringing her down for the routine blood draw.  She has been getting so good at these that the last few times she hasn’t even cried.  Because this time it was at the hospital, she had the worst tantrum getting it done.  It was reminiscent of the very first time she was in the hospital and she was 2 and scared.  It took 2 nurses to do the draw, a nurse, me, and child life holding her down.  And they had to do it twice because she still moved too much the first time.  The thing is, though, that the minute people leave her alone, she’s fine.  She leaves while waving good bye and saying thank you.  Amanda, from Child Life, walked us up to the 8th floor and we got to see a new room and the playroom that Emma would play in.  Emma was super-excited to see these two new places.  With Emma, it’s all about her knowing what will happen next.  Where she will go.  This is very typical behavior for kids with her condition, as for many other kids, especially ASD.  Now that she knew, we went down to the brand new cafeteria and got ice cream.  The problem was that she actually didn’t want to leave the hospital.  She thought she was going to be staying there.  That’s another issue we deal with…how far in advance do we deliver bad news?  She perseverates.

The rest of the weekend has been a roller coaster of emotions for her.  I’m just taking it with a grain of salt (easier said than done) and giving her lots of hugs and encouragement.  I also was able to print out a picture of the new hospital room.  As I type, she’s in bed taking a snooze with the picture right in front of her.  She’ll probably take that picture with her to the hospital, knowing my girl.  It’s just one way for her to have a sense of control in a situation where she really won’t have much.

To top it off, we finally have Emma’s placement meeting tomorrow afternoon.  Yes, tomorrow afternoon, the day before Emma’s big surgery.  Brett and I would much rather be spending time with the kids instead of having to prove why Emma belongs in a different setting.  And I will say as much.  I’m so frustrated with the whole situation that I have a few key points I will be making tomorrow.  While I’d like to go ape-shit on them, I will retain composure and be very firm in stating our case.  Thank GOD for our advocate, though.

I promise to keep you all posted tomorrow evening after the meeting!  And then I’ll post nightly (and maybe even from the hospital) during Emma’s stay.  We’d love any prayers and positive thoughts sent our way, especially for Emma.

So, anyone who is creative is probably already in love with Pinterest.  Consider that the wagon, and me jumping on board.  LOVE that site, and could honestly spend way too much time there.  Anyway, today I was on browsing around, and I found a great kids project that I would love to do this weekend for Emma’s hospital stay.  Check this out!

Pinterest

Have you discovered Pinterest?  What have you found?

We had Emma’s pre-op appointment yesterday with the orthopaedic.  Dr. K is the “hip” doc and so that is who we see.  And we got so many of our questions answered.  And one super-great piece of information…Emma will be in the new tower!  Have you seen the new tower?  It’s beautiful!

This is the lobby:

And this is what a new (private) patient room looks like:

So are we looking forward to this?  In certain ways, yes.  This needs to happen.  Her hip needs to get fixed.  It’s obvious to the untrained eye.  The hospital stay will be nicer in a new room.  The recovery will be better because there will be no SPICA cast.  This is what Emma’s cast looked like when she had her first hip surgery at age 3:

Standing in the cast was frowned upon…but whaddaya gonna do?

This go around, I will be looking for a water therapist (anyone have any ideas with that?) to start therapy in the pool after week 3.  She’ll be in a wheelchair 6-8 weeks.  We will bling it out, no doubt.  And I got the clearance for roller coasters after week 12.  If you’ve been reading my blog for awhile, you know that every fall we see Dr. Borchert in L.A. for her eyes.  And this, of course, requires a trip to Disneyland.  It’s an annual girl thing.

So the plan is this.  Paris on Thursday (how do you say “woohoo” in French?).  1 week to recover upon coming home.  Just recovering from jet lag takes that long.  And I’m sure it won’t be any easier than it was 10 years ago.  One week after I return home we have the surgery.  And we’ll be buckled down in the nice cool house while it’s sweltering outside.  Could be worse, right?

…to keep insanely busy, and…

to get sick

to have a leak in your shower UPSTAIRS

to have one child going on his first trip without you

to have the other child be admitted into the hospital for 1 or 2 nights

That’s what we’re doing tomorrow…taking Emma to Phoenix Children’s Hospital.  She will be in their epilepsy monitoring unit for 24-48 hours.  Being in that unit gets her constant EEG monitoring to watch her seizures.  Basically we want to know if the seizures have increased or decreased.  Or if they’re staying the same.  Her anxiety has been a little higher this time around.  I think it’s because she’s older and she gets that she’s going to be staying in the hospital.  Even though we’ve shown her pictures from her last EEG visit, she’s still pretty nervous.  I have new things for her to do, though, and visitors lined up.

This weekend we kept her busy while Mason went with Grandma to Napa, CA, for his Great Great Aunt Dottie’s 90th birthday!  What a treat for him!  Around here we’ve gone to the park a bunch to ride bikes and play soccer and swing on swings.  We’ve gotten hair cuts (“we” as in Mommy and Emma), went to see Tangled, which is A-Dorable!  We tried a new restaurant. We watched Frosty The Snowman.  We’ve done as much as we could do to keep her mind occupied.  I think it worked for the most part.

Anyway, before this gets too long winded, please keep Emma in your thoughts and prayers tomorrow as she gets checked into PCH.  This is very routine and “easy peasy lemon squeezy” (as she says), but she’s nervous.  And I hate coming home to an empty house at night.  Especially when one of my babies is in the hospital.

Emma getting her EEG in the spring of 2009

I promise to keep you posted!

I’m becoming active on a community I found about a week ago…BlogFrog.  They are a company that helps you build your own blog community, brand, fans, etc.  They are extremely helpful and it’s been a lot of fun meeting new people and reading new blogs!  (okay, and a wee bit time consuming, but fun none-the-less)

They have a wonderful challenge this month that will help give back…I love this idea!

Come interact with other readers of this blog and help The Children’s Hospital at the same time!  BlogFrog is sponsoring the “Give the Gift of Community” challenge to its members to inspire blog readers to connect with their peers in communities this holiday season.  If my blog gets 20 new participants to start or reply to a community discussion, BlogFrog will donate $10 to The Children’s Hospital, one of the top 10 hospitals in the country for kids and teens. Don’t be shy, hop on over to my community and meet your fellow readers!  I hope to see you there!!

Have a wonderful weekend and see you back here on Monday!