Friday, January 28, 2011

What day is it??

I think it is Friday, and if so, we've been here a full week.  It's hard to be too upset when I look at my happy healthy girl, but this situation is frustrating to say the least.  For three days/nights now, Ella has been keeping her stats up during her wakeful hours, but drops her O2 when she is asleep (for nap and at night) to a level they are not comfortable sending us home with.  We've been in this holding pattern for three days now, and just today they've decided to be "proactive" and see if perhaps there is some other reason than the virus for her stats to drop.  We just had a pulminologist here, and she thinks Ella looks and sounds great and perhaps the reason for the drop is either anatomical or sleep apnea.  So, next ENT will be coming to do a scope (to check for any anatomical issues), and depending on what they find, the next step might be a sleep study. 

So rather than retype all I've written above, I'll just start a new paragraph, as we just had the scope done.  Everything looks normal, so on to the sleep study; at least that's my assumption.  Boy, wouldn't it be fantastic to have the sleep study tonight?!  How do I make that happen...My fear is that if we don't get something done today/tonight, it won't happen until Monday.  I might lose my mind by then.

Well, looks like at least one more night at Hotel Nationwide.  This place is no where near worth ten grand a night.

Don't want to leave you hanging, so I've attached a few more pics.  It is wonderful that Ella is so happy and smiling all the time.  If she were miserable too, I think that might just put Grahm and I over the edge.

Do you like my thousand dollar nightgown?? My butt hangs out the back :(

Jailbird!  Someone let me out of this place!!

Wednesday, January 26, 2011

Just another Friday?

Well I hope anyone reading this blog is not just finding out that Ella has been in the hospital since last Friday.  But since I feel like I've only given pieces and parts of the story, I figured this is a good place to document the whole event, so here goes!
Ella had "cold symptoms" most of last week, runny nose, cough, etc.  On Thursday when I picked her up from school, she was running a low grade fever, 100.5.  She fell asleep on the way home, I carried her to bed where she slept some more and woke up her happy, chipper self.  She was smiling, playing, etc just as she always does.  In fact, she had crawled (army style) all the way from the living room to the front door to see the snow coming down.  She was fussy for dinner, but drank plenty, so I just figured she didn't feel like eating.  Friday we couldn't send her to daycare even though the fever was gone, so Grahm stayed home with her until noon, then grandma came to take over.  She was a little fussy for nap, but otherwise an uneventful morning and afternoon.  I got home around 4pm to relieve grandma, and she was asleep.  I transferred her to bed to let her rest some more.  When I checked on her an hour later, I could tell she had a fever and her breathing was short and shallow.  I called the on call doc right away, and she said the breathing was due to the low grade fever (so long as it stayed under 40 reps per minute).  I got her up around 6pm to at least get some fluids in her, of which she happily obliged, then back to sleep.  I then checked her around 7:30pm, and I could tell her fever had spiked and her breathing had gotten worse.  I again called the doc, who agreed I should take her to the Urgent care so I didn't end up in the ER later (little did we both know).
Children's Urgent care in Westerville took us right back (dad met us there, so at least I'm not alone at this point, thank God).  They tested her oxygen saturation and found it to be 79. 79...I remember from the NICU days that that number should be as close to 100 as possible.  Another, more accurate oxygen saturation test was done, and 79 was still the answer.  Long story short, you cannot self transport your child if the situation is critical.  It took me a minute to register what "cannot self transport" really meant - we were going to take an ambulance ride.  911 was called, and we were speeding down 71 within 10 minutes.  Dad was trying his hardest to keep up (there was no way I could drive a vehicle at this point and no way I was not getting in that ambulance with my daughter), but was cut off by a dump truck and delayed just a bit.  Note to all, I've never really thought about it, but when you pull over to the side of the road to let an ambulance pass, wait a few extra seconds for the frantic family member following close behind to get by you as well!  A "team" was awaiting our arrival at the ER.  Surprisingly, I kept it together until this point.  At this moment, Ella is on a table with no less than 8 people over top of her, doing all sorts of things and working frantically.  I could only stand alone off to the side and count the minutes until Grahm arrived.  What seemed like an hour was really only 10 minutes, and then dad was there.  4 hours later, we get admitted to the PICU with a diagnosis of RSV and Pneumonia.   Ella needed to be in the PICU because she was getting assistance with breathing.  We spent 3 (very restless) nights in the PICU, and upgraded to a regular room early Monday morning.  She left the PICU on a nasal cannula, which we have been working to wean her from.  She needs to breathe room air for 24 hours and keep her stats up before she can go home.  We started the room air at 4pm yesterday, but had to have some oxygen at 11am today.  I'm not sure what this means for our discharge, but I have a feeling we might be spending another night here.  This room is not the four seasons, but it certainly feels like it after the PICU.  Now if we could only get those nurses to stop coming in so often in the night, maybe we could all get more than 4 hours of sleep.  At this point, I'm certain Ella would recover quicker at home given her own bed and piece and quiet; but doctors know best and our PICU doctor told Ella that "slow and steady wins the race".  I think this is about as slow and steady as I can take though. 
Thank you thank you to all of the well wishes, prayers and good vibes.  I hope the next time I post it will be letting you all know we are home.

A few pictures of our last few days to share:

PICU stay.  Thankfully Mr Rabbit was there.

Ella's glow toe

I get all the pudding I want!

I use this thing as a weapon

Ella turning on the cute.  She was a staff favorite.  Hard to believe, right?

Dad set up the laptop so they could have movie day.

Not a big fan of hospital food.  Neither are mom and dad.

Thank you for all the get well cards and wishes.  Love-Ella

Sunday, January 16, 2011

Snakes, Lizards and Turtles, Oh My!

Ella's school was visited this week by Peter, the reptile man.  He brought lots of slithery, scaly things in for the kids to see and touch.  Ella wasn't a big fan, in fact, I pretty much had to force her hand in "petting" the blue tongue skink.  The turtle was a no go for her completely, and the poor lizard who lost his tail was way to fast for Ella to catch. 

An "Ella update" of sorts, we had a hearing test on Thursday at Children's.  The first test consisted of a probe inserted into each ear in which the movement of the eardrum is measured.  If the eardrum has measurable movement, it is said to be functioning properly and likely does not have any fluid behind it.  Unfortunately, they do one side at a time (why??).  She did well for the left, was fascinated by the doctor blowing bubbles in her face; but when it came time for the right side, there was no having that probe in her ear!  The doctor ran out of bubbles and Ella wanted nothing more than to remove that annoying probe from her right ear.  And she did, over and over and over again until finally we all gave up.  She won.  Next they did a sound booth test in which they can assess the overall hearing.  This test was smooth sailing, as she was easily entertained with the puppets popping up and making noise on her left and right sides.  She passed with flying colors, which means they were able to determine she has adequate overall hearing, but could not access each side individually.  Guess we'll try that probe thing another time...

Sunday, January 9, 2011

Christmas 2010

Santa was very good to us this year.  He brought Ella lots of fun toys and cool outfits, but mostly she was digging the tissue and wrapping paper!

Ella was a big fan of the tree ornaments, the ones she could reach, anyway~

                   We had a beautiful Christmas tree this year, courtesy of Country Pines Tree Farm:

And by the end of it all, Ella succumbed to sheer exhaustion!

it's hard to see, but her head is resting on a copy of National Lampoon's Christmas vacation!

We hope your holidays were merry and we wish you love, health and happiness in 2011.

Thursday, January 6, 2011

Getting started

Hello Everyone!

I know it's been a while since I've sent out an Ella update.  My intention was to get this blog going months ago, but like most everything else on my to-do list, I accomplished it much later than I had planned.  Better late than never, right?

My hopes with this blog is that it will serve as a place for me to share some thoughts, update everyone on Ella's progress and keep those that are interested up on the general happenings at the Joneses.  I plan to not always focus on Down syndrome, but of course it will be a big part of our story.  Perhaps this blog will help other Ds parents along the way as other blogs have helped me.

I have set up an email specifically for this blog at  There is always the option to post comments to each post, and those comments will be available for anyone to read - but feel free to use the email if that is your preference.   I haven't worked with the blog template enough yet to figure out how to add all the fancy stuff, but I'll get there.  The point initially is just to get some posts up.  Feel free to share this web address with anyone you wish, Ella would love more attention (she's currently deprived in this area...)  The best thing for me about sending out my monthly Ella updates was the feedback and comments I got from all of you.  Please keep them coming!

Here we go...