Home sweet home.  Emily is doing fine.  Finished up the oral steroids, but still doing the breathing treatments 4 times a day.  Going for a recheck tomorrow...
Here's a few more photos, not taken from a cell phone, of our time at Hotel St. Lukes

While she was admitted, she learned to say "Achoo" to sneezes and coughs.  Pretty cute.

Discharged

just before going off oxygen

Emily was discharged yesterday afternoon.  I give credit to another fabulous RT from the NICU.  She was assigned Emily's case and it was quite a treat to see her walk into the room that morning.

Thursday night was awful - not because of Emily, and not necessarily the quality of the care, but the timing of the care.  

7:30 planned bedtime

8:00 vitals taken

9:00 medication given

12:00 AM vitals

2:00 breathing treatment

2-4 Emily WIRED, no sleep in sight

4 AM vitals

8 AM vitals

Really, when is a kid supposed to sleep with a schedule like that?  So, it is my hope that if you ever have to be hospitalized, you're just sick enough to be in a wing with an -ICU in its title.  For some reason, they get the timing down a little better.  And even though you're a little sicker, they don't feel it necessary to wake a sleeping kid.  So, maybe you don't get a blood pressure or a temperature, but they're willing to let it slide.

So, Friday morning I was a little upset and overtired.  It's not that the care was bad, really, but I had a speech all set for the doctor about it.  Then in walked Nickole.  She had recognized Emily's name, and appeared pretty excited to see her.  Those NICU people just seem to love when you check in and show off how big your kid is getting. Not that hospitalization is an ideal way to reconnect, it works.  She took Emily off oxygen just to see what happened, and she must have waved the magic wand, because Emily never needed to go back on it.  

Aaron, husband extraordinaire, drove the drive, in the snow, to rescue us.  When given the opportunity to run, you run!  Although the drive home was anything but enjoyable.

Her night and morning have been fine.  Time to get back into a routine!

Day 7

Progress.

Exhausted after a walk

This afternoon Emily was moved out of the PICU unit and onto the regular pediatric floor.  She's still on a little bit of oxygen support, but in 24 hours, she has gone from 85% oxygen on 5 L flow to 1 L of flow.  Now that is some serious weaning, but she's doing great.

Day 6

Occupational therapy brought some new toys

Cheerios were pretty funny at breakfast

As of lunchtime, the RT has finally been able to turn the oxygen flow down to 50%.  The lowest it has been, that Emily could tolerate, in a week.  Doc ordered walking today, so we wandered the pediatric unit, and Emily didn't seem to mind her mask at all.  

Same drug routine.  Still on a 4 hour breathing treatment schedule.  Still telling me to be patient.

But Emily really doesn't seem bothered by the chaos.  She's been in a great mood ALL the time.

Day 5

So, I was pretty sure those PICU nurses were rock stars getting that IV in on the first try last night.  Till it went bad at 4 am.  At least she got 5 hours of fluids and IV medications.  The breathing treatments that were every six hours are now 4.  And they've added another one that blows air in that she has to breathe out against to help open up the lungs.

Emily isn't alone.  The PICU is full of babes with RSV right now.  And they looked a lot more wiped out than Emily as I walk past their rooms.  Em is still sitting up and willing to play.  She's the first room as you walk into the PICU and greets everyone as they come and go.  She's drinking and eating just fine.    She told the doctor this morning that she wanted more juice, it must not be in his job description since he had the nurse go do it.  Emily tried hard, she even added her please technique.

Speaking of not in the job description, kudos to the nurse that did my laundry today after we talked about how my three day ration of clothing was well into the recycled phase.

Emily also had a chest xray this morning, about the same as the one done in Twin on Sunday - not horrible, but not clear lungs either.

But that darn oxygen still is pretty high.

News Flash

Home Sweet...Boise

This evening around 6 things took a different route.  Emily was transported by ambulance to Boise and was admitted to the Pediatric Intensive Care Unit.  She's actually quite stable, it's just that she wasn't improving, at all, under Twin Falls's care and we just felt that she could get better care here in Boise.

Emily charmed the paramedics that drove us here.  They put her carseat on the gurney and as she rolled down the hallway she yelled wheeeeeee!  She blew kisses to everyone we passed.  She sang and bounced the whole ride, too.

The PICU is a totally different world than the NICU, but impressive none the less.  They were able to get an IV in the first time.  Hopefully the fluids will help.  Continuing the breathing treatments and the steroids that Twin Falls started.  She's all nestled in in her oversized crib, sleeping peacefully and not alarming all the time.

Tomorrow (okay, so it's after midnight, so I really mean today) is a fresh start to kicking this thing.
Fingers crossed.

Day 4, but feels like 44

Emily didn't get a good night's sleep.  It's not that she wasn't tired, she just couldn't get comfortable.  She tossed and turned and did a great job of wrangling herself with her cords and wires.  Her cannula kept coming off, she had wires stuck between her toes, pinched around her arm, and over her head.  Finally around 3 AM, she found her comfy spot.  Breathing treatments started at 6.

There isn't one single noticeable improvement to report.  She's on the same amount of oxygen that she has been on since Friday.  Today she has two doctors working her case, but the discussion of letting us go to Boise and letting them fix her has definitely come up.  The medications continue to be adjusted, but no miracle cure yet.  The respiratory therapist used this plastic piece today to tap on Emily's chest and back to see if that would break up some gunk.  The doctors want to start treating Emily as if she has asthma and RSV to see if that would help.  I keep hearing "If only we could get an IV in"  - yeah, NOT going to happen.  They're 0 for 7 now in IV attempts.  It's bad enough Emily has to suffer through more heel pricks for blood draws (that's another NICU flashback)

So, stay tuned for day 5.

RSV is a bad, bad word...

and it's kicking her butt.

She's been admitted as a hospital patient since Friday afternoon.  I feel like I'm in a NICU refresher course - discussing o2 and desaturations; keeping leads stuck on, untangled, and functioning; weighing diapers, weighing her, keeping track of every ounce of liquid she consumes; and with nothing to do but stare at monitors.  And like every other stay at a Hotel St. Luke's, never time for a nap.  They wake us for breathing treatments, antibiotics, vitals, and house keeping.

She's had chest xrays on Friday and this morning.  There's patchy parts that weren't there the other day.
They poked her five times to try and get an IV going, and all were unsuccessful.  Every hand and foot is a bruise from where the vein blew.  At least she's starting to eat and drink willingly, because that wasn't the case on Friday when we checked in.

Darn it.

Still miserable

Yesterday she seemed a lot better.  She was starting to play a little and go back to talking.  But today she hasn't done much but sleep, lay there, and then go back to sleep.  It's been a chore to get her to eat and drink anything, and she's not a fan of the caramel flavored antibiotic.  So, tomorrow it's back to the doc.

Poor Baby

A week ago I made it a professional goal to actually work five days in a row.  I was able to do it for 1 week.

Poor Emily.  She has what we guess to be bronchitis / RSV.  We guess because the doctor didn't swab for it to officially call it RSV, but she's one miserable little girl.  Yesterday she was great.  This morning a little off.  By lunch, she was tight and having a hard time breathing.  Our "friendly" local medical clinic told me to call at 8 tomorrow morning to possibly make a same day appointment.  Guess they didn't hear me when I said our toddler was in respiratory distress, otherwise they really wouldn't expect me to wait 20 hours to make a call so that I could POSSIBLY make an appointment.  I drove to Twin Falls to see our pediatrician, who was in the midst of her NICU rounds (she's the director of the Twin Falls NICU) to make time for Emily.  Many kudos to her.
Augmentin for the bronchitis for 10 days and frequent albuterol treatments to ease her breathing and a recheck on Friday.

Now, really, medical clinic in town, would that have been that hard?  Ugh

Happy Valentine's Day

Love, Emily

Birthday Party

We went to a 2nd birthday party today for a family friend.

Emily had a great time.  She played with a couple older kids, ran around and kicked balloons, and didn't even shy away from the other adults, which she had a tendency to do.

After our dinner, it's time for the dogs to go into the garage and eat.  She goes to the garage door, like in the video, and she's getting pretty good at making her dog noise "Ruff!" Remember to pause the music below.

Happy Friday!

 Today was more outside time...

 and touching the snow... See the grass?  Can't wait for spring.

Today she started using the word "tuck" which translates into "help me do a somersault" and she's starting to call the kids at daycare by name.  Reese is Reese, Ginger is Gingy, and then, well everyone else is also Gingy.

Then there's this - she was playing with some hair bows that one of my students gave to her.  I picked one up and said" one."  She picked one up and said "two."  We spent the rest of the night counting one and two.

Hit pause on the music below so you can hear her.
Happy Weekend!

Warmer Weather

 Yesterday was a nice day as far as Idaho winters go.  We spent a little time outdoors exploring.

She loved touching the snow.  

Emily has a new thing - whenever the cell phones ring or chime, she holds her hand to her ear.  And any living creature is a doggy, like the fish in the aquarium at Cabela's, the cats at the vet, animals in books.  She's trying to whistle like her dad to get them to come.  

Ready for the Weekend!

NICU follow up

Big day for the little girl today.  We traveled to Boise for her 18 month NICU follow up appointment.  It was really supposed to be her one year, but since we had to postpone it twice, it worked out as the 18 month one.

It's nice to be greeted by a familiar face at the clinic, which is actually in the Children's Hospital and not in the NICU.  Judy was one of the patient care coordinators while Emily was admitted, and she was the one that got the discharge in order way back in September of 2009.  Judy was pretty impressed to see Emily running around the waiting area.

The developmental doctor wasn't there today, so one of the occupational therapists that was also in the NICU did Emily's evaluation.  Emily, who weighed in at 24 pounds today, pretty much got an A+ on that test.  One thing I have to say for the NICU is that they evaluated her truly on her adjusted age of 16 months.  Emily stacked blocks, put pegs in a puzzle, colored, put things in cups, threw balls, dumped things, used her words and her sign language.  Celine the therapist was quite pleased with how Emily performed.  Good job, Emily!

I was hoping this was our last follow up.  But I wasn't that lucky.  We'll go back in the fall when Emily hits the 2 year adjusted mark.  Maybe at that point we can cross this specialist off the list of doctors.  It all comes from Emily's oxygen complications - remember the O2 levels that were supposed to be in the 90s?  Remember my blogs about the desats and the machines beeping?  Remember how Emily would be on the ventilator, the cpap, the nasal cannula, then nothing, then back on something sometimes all in one day because she couldn't maintain.  Then there were all those scary times when it would dip so low that she would turn blue...  Yeah, those times really sucked.  We've come along way.

Our Boise trips can be pretty exhausting.  Especially when you take advantage of the fact you're in Boise to run some errands, or in our case, take the dog to the vet - again.  Our loyal lab Faryn, who had cataract surgery back in August, is now having glaucoma problems and has been to the canine opthamologist twice in the past week, and one trip was a five day stay in the kennel.  Today at least things seemed stable with the dog, and Emily was a fabulous traveler.