Sunday, February 20, 2011

Long Overdue Post

Thank you to those of you that follow this blog faithfully, and gently remind me that I haven't posted in a while...the reminders worked, so here I am finally getting an opportunity to download new pictures and write a new post!

The last few weeks since Ella has been home from the hospital have been fairly uneventful, and this is a good thing.  Ella's appetite has returned with a vengeance, eating and drinking what seems like way too much to stuff into this little girl!  Loss of appetite was expected with RSV, but fortunately Ella didn't lose weight.  At her 18 month check up (which was postponed since she spent her 18 month birthday in the PICU), she weighed in at 18 pounds, 14.5 ounces; and measured 28.25 inches long.  The next well visit would typically be at 24 months, but Ella's pediatrician would like to see her at 21 months, just to check in on her weight.

I wish I had more to report in regards to her follow up with Pulmonology, but I've literally been playing phone tag with the doctor all week.  I did get a message saying her data looked good enough for her to come off the oxygen at night, but that she still sees a little "something" and would like to do a sleep study within the next month.  I'm trying to clarify the "something" :) and will let you know what that means as soon as I know.

Ella is making great strides on a gross motor level.  She is still doing her army crawl thing, but she has become extremely proficient at it, and moves at top speed.  If I'm in the kitchen making dinner, she'll come check out what I'm doing; if I'm in the bathroom getting ready, she comes in to keep me company.  She is "playing" with the all fours position, getting into it, rocking, but when she gets motivated to move, she's back down onto her belly and away she goes.  She loves to watch the snow, so she'll go from the front door to the back slider doors, watching out the windows.  Sometimes when I pick her up her shirt is dusty and I realize just how dirty my floors are.  Grahm wants to tie a swiffer cloth to her chest and turn her loose!

We haven't snapped too many pictures lately, but below are a few from the past few days.  Enjoy and thanks for reading!

Ella and her new Magna Doodle

My gma Cheryl made me my very own batch of Valentine cookies, cutout hearts with pink frosting - YUM!!

Grahm participated in the Polar Plunge in support of Special Olympics Ohio, hosted this year by the Columbus zoo.  Brrr! 

Thursday, February 3, 2011

Home Sweet Home

I can't believe it is Thursday and I am just getting to this post.  Ella was discharged from the hospital Sunday around 3:30pm, and I don't feel like we've stopped since.  Once we got her home, we had to call to have the Oxygen delivered and get our "operators license", then a quick grocery run for milk, and Monday morning I went back to work.  But let me back up and tell you how our last few days at the hospital went and where we go from here.
On Friday, we saw an ENT who performed a scope to look for airway blockages that would cause obstructive sleep apnea and hence lower O2 levels during sleep.  This test was normal.  Next, we had an x-ray to check for extra soft tissue in the neck/throat area that could "relax" while Ella is asleep and also cause obstructive sleep apnea.  This too was normal, although we really appreciated the excursion to radiology :)  So, ENT and pulminology agreed to just watch her and see how she did Friday night.  She slept really well (it's amazing how much better you sleep without someone coming in to do vitals every 4 hours), and only went below levels once.  The next day, the doctors came by, happy to hear this news and decided we needed to stay one more night so they could hook up something to her saturation monitor that would give them a continuous feed of readings.  Apparently the monitor normally just takes periodic reads rather than continuous monitoring.  Ella didn't have as great of a night, but even when she went below levels, she only dropped to 86, much better than previous nights of dropping to 82 or 83.  Finally, the doc reviewed the readings on Sunday morning and determined she fell within a range that would allow her to go home, but only with Oxygen during sleep.  Whatever, I'll take it, just get us outta here!
So, the plan is to have her on Oxygen up to 4 weeks at home.  This is the length of time the expect the virus to fully run it's course and for her to be completely healthy again.  At which point we will do a sleep study.  There still has to be a reason her stats drop during sleep and it could be one of two things.  Either it's the virus still present in her lungs, weighing her lungs down when she sleeps and dropping her levels, or she has central sleep apnea.  I vote for the first reason, but we'll just have to wait and see.
Oxygen at home has not been without incident.  Ella is still very sensitive to being held down and having anything done with her body.  This makes putting on the saturation monitor sensor (it attaches to her big toe) and the cannula a real treat each night.  She sets off the alarm on average 2 times a night.  It is almost always though because she has pulled the cannula out of her nose, or ground her toes into the mattress enough to mess up the sensor.  Either way, Grahm and I are both bolting up out of bed at the sound of this horrendous alarm only to find our daughter sleeping peacefully right through it, thank God.  The weather isn't helping.  The night before last with the strong winds, our power flickered 4 times and each time it tripped her monitor, as the Oxygen machine needs electric to run.  I almost wished the power would just go off for good, so at least we could hook her up to the tank that doesn't need electric and we can all get a good night's sleep.
We are so appreciative of our friends and family, and a big thanks to all of you that prayed, visited, called, emailed, texted, etc and kept us in your thoughts.  We were constantly feeling good vibes, and it truly kept us going.  I have included a few pictures from the last day or so at the hospital.


Ella, free and clear of facial band aids and nasal cannula.  Now if they could just get those discharge papers completed...

I had to include this one cuz I love the baby budda!  Thanks for the gifts Meg and Jen, the tissue paper was just as popular though as the book and cell phone :)

Not our best family portrait, but a happy day it was!

almost out the door!

Grahm's parting thoughts on the piece of equipment that kept us in this place for nine nights, the O2 saturation monitor.