Saturday, October 20, 2012

Peyton, iPhones and Building Community

Here we are..heading into yet another Saturday in the hospital with Peyton.  Today begins her 12th day in the hospital.  Today begins the 12th day wondering what has been wrong with her all this time.  Answers are eluding everyone.

We thought yesterday was starting out pretty well.  She still hasn't returned to her base line, but this morning was hopefully.  However, after a horrible night's sleep Thursday night, she was simply exhausted on Friday.  She went to sleep around 1:30 pm after the respiratory therapist was finished with her and she was still sleeping when the respiratory therapist came back a few hours later.  The next respiratory therapist came in around 9:00 pm and Peyton was still asleep.  In fact, in all that time, she barely stirred when having her breathing treatments done, and essentially remained asleep for hours.  Around midnight this morning, she woke up just a little when the nurse came in to check her vitals.  She also needed a diaper change.  Her "awake" heart rate was considerably higher than it's been in several days since being here.  Her "asleep" heart rate as I type this at 12:38 am is higher than her normal "healthy" waking heart rate.  Oh, the red cheeks...that's irritation from the tape holding the nasal canula in place.  And the flaky skin...that's just dried glue from when she had her EEG the other day.  We still can't get it off!

I love this picture in that it appears she's playing peek-a-boo.  Really, though, she caught her little gown in her hand as she moved her arm and she drew it up over her face.  It was cute.  She was pretty well asleep when she did it.  Aside from being a cute picture, it's actually a good opportunity to show you something.  You have probably heard me talk about her port quite frequently.  It's a surgically implanted device that, when not accessed, you can't even see.  See that white square tape er her chest??  See the black thing in the middle??  That is the IV needle going into her port.  The needle is a right angle to the black piece, rather than straight like a traditional peripheral IV needle.  Look at her skin...look towards the bottom left of the picture.  See all the lines??  Yes, her skin is that transparent.  It's so fair, delicate and thin.

Yesterday, our neighbor sent these socks up to the hospital with Ron and Moira.  Aren't they cute??

We have just been going with the flow the last couple days.  Nothing major has been going on.  We are a little concerned with her current status - the increased heart rate and sleepiness.  I will say that she started on four different antibiotics and they peeled them back slowly over the last few days, discontinuing the fourth and final antibiotic just yesterday.  She had a full week on them, so that's good.  I just hope she isn't developing something new!

Last night, I posted this picture.  Why?  Two reasons.  First, I just got my very first iPhone and now I'm cool like everyone else and have Instagram!!  {fyi, you can click the follow link up in the upper right of this blog}  I was taking a few pics.  Second, and more important, I have actually had a few people ask me where I sleep up here.  I haven't been home since I took Peyton to the ER on October 9th.  I will say that we've had a few room changes since we've been here, but our current room is where we've spent the most time.  This is my "bed".

I'm actually laying here right now typing this post!

Anyway, I posted this picture on twitter last night.  I would up getting multiple tweets from people really encouraging me and letting me know what a great mom I am.  Honestly, I only posted this so I could actually show people where I sleep...that's it.  I'm not trying to get the sympathy vote or anything like that.  I always find it awkward hearing these compliments.  First, I am a relatively insecure person at times, and I have a hard time accepting compliments as it is.  But second, I don't honestly feel worthy of the praise in the compliments.  The support and encouragement I received last night left me with tears in my eyes.  Honestly.  I so appreciate the comments and compliments.  

I hear these things and I think I don't feel like I'm as amazing or whatever as they're saying I am.  I'm Peyton's mom and I'm just being her mom right now.  She needs me and I am here.  This is what moms do, right?

And then I look around.  Not every child in here has a parent with them during the day...or during the night...much less both day and night.  I saw one child in the PICU whose family hadn't yet been present and he'd been there over a day on his own from the sounds of it.  I've heard a child being yelled at by an adult.  I'm hoping it wasn't the parent of a patient yelling at the child!  Regardless of who they were scolding, this isn't the place for that!

And then I listen.  I'm not just hearing these words of encouragement from you.  I am hearing comments from hospital staff and volunteers.  When Peyton had her endoscopy last Sunday, the GI doctor who did it just happens to be the doctor we took Moira to for her tummy issues a few months ago.  Peyton sees a different GI doctor.  However, Moira's was the one on call over the weekend so he got to meet Peyton.  When the case was described to him {before he met with us}, she was described as being a patient whose mom is just so nice, etc. etc. etc. - a point which this doctor made sure to tell me more than once since we've been here.  His comment was that when he saw me and put two and two together {i.e. Peyton being my other child}, he said he should have known it was me.  {insert awkward acceptance of praise and compliments here.}

Friends, I am being totally honest when I say to you that when these compliments come, I don't feel like they are about me.  I don't feel worthy because I'm just a mom doing what a mom should do.  I don't feel like what I'm doing is exceptional in any way.  And if I'm being told I'm that nice, it's only that I listen to the medical professionals here, and I learn, and I understand, and I don't know...I just feel like they are worthy of respect.

I don't share all of this to toot my own horn by any means.  I share it because when I hear all of this, it is actually - I don't know - humbling in a sense.  I am not sure that's the right word...but it's 1:09 am now...and I've been up since 5:30 am Friday.  Right now, on day 12 of this hospital stay, the words that I am hearing aren't mere words.  They truly are a source of real support and encouragement.  We have no family here.  We have church family and some friends, but we don't have a huge circle immediately surrounding us.  I've had a couple visitors over 12 days.  It's quiet here.  It's really easy to start feeling alone...and lonely.  Especially when the other two members of your family can't just drop everything and spend hours and hours up here with me.

So what I've been finding since last evening when those tweets were coming at me is that it was God showing up in a powerful way.  Comments from where I least expected.  Powerful comments that brought tears to my eyes.  140 characters of encouragement being tweeted in a way that showed me that while it is physically quiet here {aside from the medical side of things}, God is providing a whole host of people on the outside as support.  I can't even begin to comprehend how far-reaching the prayer support has been for Peyton.  I know these specific tweets that I received came from a few points scattered across the country.

I think that God is showing me that while this experience can be isolating, it is also drawing me closer to people outside the confines of this building.  The support is coming from people I have met and wish I could see again, from people I know I will see soon after we're out of here, from people I hope to one day meet, and from people who I'd love to meet but may never get the chance to.  God is providing encouragement and incredible support through this community.

For that, I thank HIM above all...but I also thank you!!


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