Friday, April 25, 2014

Slumber Party!

Hanging out after ENT
Yesterday Aaron and I headed to Primary's for a "slumber party,"  aka a sleep study.  This was to look at how well the ventilator was working for him, and if we could lower his support.

He also had an appointment with his ENT because of repeated (like another one EVERY. FOUR. WEEKS) ear infections and a cyst that's popped up near his collarbone.  Yeah, we had lots of fun.

Actually, it really wasn't too bad.  We were up there at 2:00 for the doctor's appointment and then hung out in the Ronald McDonald Family Room until it was time for the sleep study at 8:00.  Fun to see other parents we've met before and find out how their little ones are doing.  And peaceful.  That was nice.

ENT was a helpful visit.  They're going to bring him into the OR end end of June and replace his ear tubes, clean the middle ear really well, and check for any nasty growths.  Really hoping not to have any of those.  He'll also take out his adenoids in case those are contributing to the infections, and finally, remove the cyst.  It's more than likely benign, especially at this point.  But in Dr M's words, it's safer for Aaron if it's in a jar, and not in him.
All the meds we had to take up with us.
They don't provide snacks or meds at this party.
It's strictly BYOM (bring your own meds).

The sleep study we actually won't find out "real" results on until mid-June when we head back for a follow-up with pulmonology. But my guess is that we won't be making any changes.

Before they started "dressing" him.  He's
starting to get a little sleepy.
He did really well on his current settings, but not so well when they changed them.  So we'll have to see what happens.  At least he's doing okay where he is right now.  I'll take that.

Setting up for it was kinda funny.  Aaron has a thing about exploring anything on his head, and all the wires were no exception.

All "wrapped up" for the night.
This looks like fun!  Even more
things to grab and play with!

They put a TON of leads on him and then put a netting over them to help hold them in place.  What's that up there?  Let me see if I can play with it.  And netting was just perfect for winding little fingers in and pulling down.  After trying to distract him several times, we gave up and swathed his head in gauze and taped it down.  And he went to sleep.

Sleepy head

He actually slept pretty good.  Me, well, not so much.  I've never slept well at slumber parties.  But that's okay.  My wonderful nurse came in today even though he wasn't going to school.  So we came home, he played, and I went to sleep.  Can I say, I just love my bed.

All done!  Mom may not have slept much,
but I sure did!

 "There's a long, long trail a-winding into the land of my dreams."  ~Stoddard King, Jr.


Thursday, April 24, 2014

You are Important, You Matter!

On Monday night, a young man took his life.  A fresh life, snuffed out, right on the brink of adulthood.  Set to graduate high school in six weeks, he's "graduated" early.  And my heart is broken, for him, for his family, and for the other young people out there like him.

It took me back 30 years, almost exactly.  I don't know his pain, but I know mine.

Thirty years ago, plus a month or two, I stood in a similar position.  It hurt, it hurt so bad.  I'm sure a lot of outside influences played into it.  I know I was exhausted.  Most mornings, I left home about 4:45 a.m. and often wasn't back until 10 or 10:30 p.m.  I'm sure my nutrition was awful.  Young teen girl, always on the go, with a high desire for sugar and not so much for the veggies.

I wasn't a druggie, never touched them, even caffeine (outside of chocolate, of course).  I wasn't depressed, at least not in the conventional way. My grades were pretty good.  I played piano in the high school jazz band.  I had friends.  I wasn't being bullied.  (That was a different year.)

But I felt so alone, so very alone.  I felt like I didn't matter, didn't stand out, wasn't special.  And I was so very, very tired.  Tired of trying, tired of BEING.  And if I didn't exist, it wouldn't make any difference, not really.  There were plenty of others to carry on.

A friend, one friend, heard my cry.  She saw (or heard) my pain, and it scared her.  I figured she was "safe" because she didn't go to my school. We didn't even see each other very often.  But I forgot that her dad was a bishop (local leader for our congregation).  And as such, he had my bishop's number, who of course had my mom's.

I'll never forget that conversation we had.  Both she and my bishop figured it was just a miscommunication.  After all, I would never do that.  I was too busy, too smart, to "involved" in things.  The pain and heartache on her face when I admitted what I was planning, I'll never forget it.  And while what I was going to do doesn't matter, I've since learned, it would have worked.  I would have left this life, and far too soon.

But see, I was WRONG!  I did matter.  I DO matter.  Just by being I am important.  And so is everyone else.  Just being ME  is important.  And that's what we've got to make sure that others around us know.  THEY  are, every single one of them, important.  Not because of what they do or don't do.  Not because of anything external.  Just because they are!  Each one of us is needed, important, essential!

And it doesn't matter what's happening NOW.  It will change.  That's something we can be sure of.  And if it's lousy right now, okay, just keep plugging, limping, crawling along.  Because change WILL COME.

I look back on all the things I would have missed, and don't even know where to begin.  Falling in (and out and in and in and out) of love.  My children.  Sunrises and sunsets and shooting stars.  Hanging out with friends.  Prom.  Playing Leisl in a community production of Sound of Music.  College.  Staying up all night with roommates.  Goofing off.  Learning to drive.  Traveling.  Getting married.  Seeing my sisters and my brother grow up.  And the list goes on and on and on.

No, it hasn't all been great.  But it's like roses.  You have beauty and you have thorns.  They go together. And that's a good thing.

Thirty years and counting that I wouldn't have had. Oh, my heart aches so much for this young man who thought he had nothing left.  Please, please, please, if you're thinking you don't matter, you don't have anything to give, the world would be better without you, or at least not miss you, don't give up!

There is someone, some place for you.  And without you, yes, the world and everyone in it will be poorer for the lack of you.  So please, keep trying, reach out to someone, and if that someone lets you down, reach to someone else.  You are needed.  And yes, it will get better.

"Never, never, never give up" - Winston Churchill

Friday, April 18, 2014

Monday Funday, or Not!

I should have broken down days ago and written this.  I might have gotten more done around here that way.  Anyway, you've been warned, right?

When we last left our hero, he had come home from the hospital after only a seven-day stay.  Okay, eight if you count that we went in early one Friday and came home late the next Friday.  Record breaking for him.  Less than half what it's ALWAYS been for that dratted common cold.

I did keep him home Sunday, just to make sure, but everything was looking good, so when Monday rolled around, he went to school.  And I have to say, a whole lot easier than the rest who'd also had the week before off thanks to spring break.

BUT, um, I guess he was just biding his time.  Remember riding the bus to school?   Remember that nice, smooth, very relaxing ride?  No bumps, no jolts?  Yeah, me neither.  And his bus isn't (much) different.

Apparently, he still had some residual junk down there which the ride promptly knocked off the walls of his lungs.  And he started coughing.  And desatting.  And turning ugly colors.

Meanwhile, I'm sitting at the computer, getting started on work.  My cell phone rings.  Now, his school nurse has her very own ring tone.  That's one that never gets ignored, or even answered slowly.  So I knew the second I heard it there was a problem.

Fortunately, she's amazing.  I told her to start bagging him and I'd be right there, wherever "there" was, because they weren't even to the school yet.  And because it's Monday and I'm beat, and nothing's (supposed to be) going on, I'm in ratty sweats with my hair just pulled up in a mess.  But out the door I go.

His sweet bus driver just put off picking up the other kids and drove straight to the school so I wouldn't have to try to find them.  I got there, and he was looking pretty good.  But my big worry was trying to decide if this was still the tail-end of his cold, or had he managed to pick up RSV from one of his neighbors up in the PICU.  Because those sats, they'd been down at 59 and 60% when I got the phone call.

So across the street we go to American Fork Hospital to get a VRP (viral respiratory panel) done.  While there, we run into his friends, Lone Peak paramedics, who have just brought someone else in.  These particular guys hadn't seen him in a while, were of course concerned, and thrilled with how big he's gotten.  Funny thing, the nurse came to see the "ambulance patient" and came into our room because that's where the guys were!  Had to tell her that her patient was actually the one next door.

Viral panel came back clean, we came on home, and I kept him home on Tuesday, too.  And just like any other kid who's kept home an extra day "just in case," he was bouncing off the walls (of his bed).  He HATED getting his VRP.  They take a flexible swab and go up the nose and down the back of it almost to the back of the throat.  Dad said that if you're going to get out of school, you have to pay a price.

And Wednesday?  Yep, back in school, having fun, learning, growing, and looking like nothing ever happened.  Love my silly little man.

"It takes both rain and sunshine to make a rainbow." - Unknown

Friday, April 11, 2014

Bustin' Outa Here!

 Let me ask you, does this look like the face of a kid who needs to be in the hospital?  Yeah, I don't think so either.  And the docs and nurses and RTs are all in agreement.

Last night we made it to three liters of oxygen at about 10 p.m.  And he has STAYED there!  Yea!!!

Now we do have all sorts of alarms going off.  Many more than we've had all week.  But that's because he's pulling his leads off, disconnecting his ventilator, and refusing to hold his legs still so we can get blood pressure measurements.  Silly boy.

Yeah, it's time to go home.  So (and I really hope I'm not jinxing myself) in about two hours, it will be shift change and we're going to leave then.  We'll be just shy of our 24 hour mark, but I think we'll be just fine.  Especially since he's been awake since about 7:00 this morning and done great.

This is less than half what any previous stay for rhinovirus has been.  And it came on harder and faster than before as well.  Usually we spend about a week in the PICU fighting rhino.  Yep, done that.

But then, his pulmonary hypertension kicks into high gear and we spend another week to ten days on the floor, trying to bring him down to where we've got wiggle room at home.

I think it's his new vent settings.  It's just so much easier for him to breathe on them.  Can't wait to see what the next few weeks and months bring.

Also can't wait to sleep in my own bed tonight.  I'll try to remember to take a picture of him and post it on his Facebook page as well leave.  Wish us luck!

"The best is yet to be." - Robert Browning

Thursday, April 10, 2014

We've Made the Jump

There wasn't much going on yesterday, so I didn't get a post put up.  Today, however, he's taken that big step.  He's now using his home ventilator (okay, it's the hospital's vent, but the same model we use at home) and doing really well!

He is still sick.  He's still using more oxygen that usual.  But the leak around his trach has increased again.  You know how when you get sick, your throat feels scratchy and maybe a little sore or swollen?  Yeah, it really is swollen, but we don't measure our throats so much.

However, his ventilator has a way of measuring how much of a leak he has around his trach, how much is escaping up and out of his nose and mouth instead of back out through the vent circuit.  Last Tuesday morning, long, long before we saw any signs of illness, I noticed that his leak was smaller.  At the time, I just thought, "huh, wonder what's up with that?"  And kinda kept an eye on it over the next few days.  It stayed smaller, and I tucked that info into the back of my mind.

Well, today, back on his ventilator, that leak is bigger again.  Not quite as big as it usually is, but pretty darn close, and closer to where it usually is than where it was before he showed signs of illness.

So I guess I've maybe got another way of forecasting illness for him.  Because that leak got smaller on Tuesday morning, and he didn't show any real signs of illness until Thursday evening, more than 48 hours later.

And this monkey?  What's he up to?  Well, actually right now, he's sleeping.  He's stirred a couple of times when we've been talking, even opened his eyes briefly, but it was a "really guys?  Can't you see I'm trying to sleep here?" kind of look, and then back to sleep.

This morning though, he was really on one.  There's a gray temperature probe that plugs into the circuit down by him.  Yeah, he got a hold of that a few times and pulled it out.  Then another time, he pulled off a sensor that's designed to measure the gasses he's breathing out.  And put it in his mouth.  Yeah, the ventilator wasn't real impressed and started squawking.  The rest of us thought it was kind of funny.  Besides, it showed that he's getting more playful, more energetic, and feeling better.  All good signs.

So we won't be going home tomorrow, but my guess is we'll make it to the floor.  And then we'll just have to see how long it takes him to get his oxygen requirements under control.  But I think we might be in the homestretch.

Oh, and just an FYI: Respiratory season is far from over. In our little row here in the PICU, Aaron is the only one who has underlying issues. All are in for respiratory viruses/issues and range from about 2 weeks to 2 years in age. And I don't even know what all is in the other rooms here.  A simple cold, even for an otherwise healthy infant/toddler is not always simple. Wash your hands and stay home if you're not well!

Life's problems wouldn't be called "hurdles"
 if there wasn't a way to get over them. 
~Author Unknown

Tuesday, April 8, 2014

I Think He's Sung This Song Before

It's starting to look like a "been there, done that, doing it again" kinda thing.  Except he's sorta sleeping at night, which is new for him in the PICU.   What does that mean?  It means he's being silly, playing and perhaps the happiest kiddo in the hospital.  Not just the PICU, the whole hospital.  And you're looking at him wondering why it is he's even IN the hospital, 'cause he looks THAT GOOD.

And then you turn and look at the ventilator, and oh, yeah, that's why.  Lots of oxygen.  Like 65-85% today.  Yeah, more than yesterday.  We're still pulling "stuff" out of him, but not as much and not as colored.  But here we are, right on track for kicking that darn pulmonary hypertension into gear.

President Uchtdorf spoke during the Sunday morning session of General Conference on gratitude and faith and enduring.  And I think that maybe, just maybe, I might have realized what Aaron's secret is.  See, he is never angry.  Sometimes, he is sad, but only rarely and only with really, really good cause.  He is the most brave, happy soul I know.  And he puts up with so much!  But I believe Aaron knows his purpose in life, and he knows where he came from and where he is going.  He knows his Savior and His love.  And he has faith, tremendous faith inside that perfect soul that is housed within his imperfect body.

President Uchtdorf said:
When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace. 
We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?
There is a common phrase about how life isn't about waiting for the rain to pass, but learning to dance in the rain.  I think Aaron's life is about dancing in the rain, and this kid loves to dance.  And I'll take that goofy, funny little man any day and dance with him.  He's taught me how to dance with him and his challenges.

Now, I get to learn how to dance through some of the other challenges in my life.  Because I'm pretty comfortable (most of the time) with him and his challenges and his uncertain future.  On the other hand, I'm not so good at being patient in the many other aspects of my life.

And in time, he'll get past this virus.  His lungs will relax again, let the blood flow more easily, and we'll go home.  Love you, my perfect, precious little teacher.

Gratitude is an art of painting an adversity into a lovely picture. ~Kak Sri

Monday, April 7, 2014

Holding Steady

Today's been kind of a holding pattern.  We decided not to try to make the jump to the home vent.  They've reduced his hospital vent settings to very close to his home vent ones, except his oxygen.  Yeah, small detail.

He's still needing about 50-55% oxygen bled in through the ventilator.  It's no trouble at all to do that on the hospital vent.  His vent, well, that's another story.  The hospital vent can go to 100% oxygen if needed.

And we've been there before, just not on this visit.  His home vent, when we're pumping 15 liters (yeah, 1-5, no decimal points) through is only about 52%.  So he's not quite ready yet for that one.

BUT he's feeling so much better.  Still kinda goopy, still tired, but he's more playful, smiles, and was even singing with the music therapist who came in today.  I tried to get video, but no dice.  As soon as he saw the camera, he was more interested in trying to figure out what I was doing than he was in singing.  So you'll have to take my word for it.  It was really sweet.

I did manage to get a picture of him helping play the guitar.  This kid (yeah, this mostly deaf kid) LOVES music.

In other news, David left today for Portland.  He's about 7 1/2 weeks post-op from a full ACL repair, and doing really well.  They wanted him to be able to walk up to five miles a day before returning, and he has done so, three days in a row last week.  A little bittersweet saying good-bye again, but oh, it's so good for him.  Please keep him and all our missionaries in your prayers.  He's an amazing young man and we'll miss him.  It has been really good to have him home the last couple of months.

 The race is not always to the swift, 
but to those who keep on running.
 ~Author unknown

Sunday, April 6, 2014

I Believe In Christ

There is something very poignant, very appropriate and touching about watching the Mormon Tabernacle Choir sing  "I Believe in Christ" from an PICU room with your child, while all around you are other very sick, compromised children.
I believe in Christ; he stands supreme!
From him I'll gain my fondest dream;
And while I strive through grief and pain,
His voice is heard: "Ye shall obtain."
I believe in Christ; so come what may,
With him I'll stand in that great day
When on this earth he comes again
To rule among the sons of men.

Children aren't supposed to be lying in hospital rooms, tied to machines, lines, fighting to breathe, to move.  Children should run, laughing, playing, care-free.

Conference is a bit different this time.  Our family is scattered around the western half of North America.  William, Jonathan and Joseph are on the road to Montana where they'll be spending spring break working on an Indian reservation.  Aaron and I are in the PICU at Primary Children's Hospital.  Deborah and Michael are watching from home.  David, Matthew and Andrew are at Conference.  And Mary is in British Columbia watching.  But scattered as we all are, we're all still gathered to hear the words of the Lord from his servants.

I am so grateful for their counsel.  I'm going to have to go back and re-watch and read the talks again.  Somehow, consulting with doctors and respiratory therapists, and working with nurses makes it hard to really focus.

On the Aaron front, he's having a very good day.  He should be peaking now in his symptoms.  Today should be his worst day.  Yeah, once again, this kid doesn't read the script and doesn't play by the "rules."  And once again, that's more than okay.

We've been able to reduce his support on the hospital ventilator quite a bit today, and they may try to make the jump back to his home ventilator later today or tomorrow morning.  He'll still be on quite a bit of support, much, much more than his regular settings.  But the reason he's on the hospital vent is because our home vent couldn't keep him breathing well.  So it's a good thing happening.  Maybe it will be a faster process than I first thought.  But whatever it is, we'll just deal with it and make it happen.

I leave you with probably my favorite quote from Conference.  It's from President Uchtdorf's talk on Sunday morning.

“In light of what we know about our eternal destiny, is it any wonder that whenever we face the bitter endings of life, they seem unacceptable to us? There seems to be something inside of us that resists endings.  

Why is this? Because we are made of the stuff of eternity. We are eternal beings, children of Almighty God, whose name is Endless and who promises eternal blessings without number. Endings are not our destiny.”

I am so grateful for this knowledge, for knowing that this life is not the beginning, nor the end of our existence.  It is what makes the tenuous nature of this life bearable.  May God be with you.

Saturday, April 5, 2014


We saw a few of those impish grins today.
Love them.
Aaron is holding on okay right now.  He's continued to worsen, but that's expected.  He's only about 48 hours past the start of his first symptoms, so it should peak tomorrow.  Last night about midnight, they made the decision to switch him over to the super-duper ICU ventilator.  It's good in many ways.  He can get a lot more and better support from it.  It also gives back more information which, in turn, means he doesn't have to be poked for labs as much.

Speaking of which, his protected brush sample has started to grow out some nasties.  That's where they take a sterile brush and go down into the lungs and scrape off some cells for testing.  Yeah, it's about as much fun as it sounds like, and he's not real thrilled with the process.  So since they may need to start antibiotics, they also drew blood today for blood cultures.  Can I just say, I'm really hoping they don't come back positive?  We've already been there, done that, and I can live without doing it again.

That pad under his IV makes a great chew
toy, at least from his point of view.
We're still pulling tons and tons of "copious" (his nurse's favorite word for him today) secretions out of his trach.  And they're a thick, nasty yellow color.  More signs that he hasn't hit bottom yet.  BUT, he's happier than he was.  He's spent quite a bit of time awake today, and we put up his toys in an effort to try to distract him from his IV.  See, it's got a fun blue cap on it and it's in his right hand.  So he's been trying to hold his hand in the air and catch the cap in his mouth.  Little monkey!

But about that title, Sisterhood.  Yeah, it's a pretty good thing.  Last December a neighbor and her son ended up her unexpectedly.  I felt bad that I didn't find out until many weeks later.  I told her I wished I'd known because I had friends up here who could have helped her.  "Really?  Friends up there at the same time?"  I always have friends up here.  And right now is no exception.

In fact, today there were three of us in here (yeah, "here" meaning the PICU, not just the hospital), the other two also battling rhinovirus, but they're (hopefully) on the tail-end of it.  And we can talk and joke and commiserate together.  And there are more scattered on some of the other units.

But then, the need for this sisterhood was really brought home tonight.  See, there was a Code called on the third floor.  My own heart always catches a bit when it happens, and I pray for the family involved.  Then they started moving around a bit more next door, and there was talk that the code was coming into the next bed space.  My nurse was obviously going to be busy, so we got things set up for Aaron's food and meds early, and then waited.  And they waited.  And waited.  And waited some more.

Meantime, I'm playing with Aaron, and suctioning him as RT was giving him his breathing treatment, and I realized that his clothes were just nasty.  Kinda happens when you've got green goop coming out, and blood, etc.  Yuck.  So I went around the corner to get some fresh jammies for him.  As I came back, there was a crowd between me and Aaron's bed space.  The patient had arrived.

Then I saw Mom's face.  And I knew her. That Code just got a whole lot more personal. My heart just sank and as she came towards me, I opened my arms and we just held each other as she cried.  Her little one is stable now, but how scary.  Mom's okay, too.  See, when your little one, your heart and soul, faces these things, you do, too.  And I'm glad I was here.  We share a bond in this world of medically challenged children.  All of us here do.  We've learned and fought for things that no parent should have to, and when the chips fall, we're here for each other.  Yeah, a sisterhood.  One we never thought we'd be part of.  But a blessing, an incredible blessing none the less.

Help one another, is part of the religion of sisterhood. ~Louisa May Alcott

Friday, April 4, 2014

Sick, So Sick, Again

Okay, no promises that this will make a lot of sense, or that it will be in English (as opposed to Medicalese) but here's what's going on.  And as much as I don't really want to relive it, I do need to get it down.

Yesterday morning, Aaron had a little bit of a runny nose.  And when I say, "little bit" that's all it was, a tiny bit of clear snot that drained out when we moved him to his wheelchair.  After school, his nurse said he'd had quite a bit more, but it was all still really thin and really clear.

At that point, I was thinking allergies.  In fact, he and I had a little "argument."  I was mentioning to his nurse that I was leaning towards allergies because he was so happy, because last time when he was sick, he wasn't happy at all.  And he started nodding his head, "yes, I was."  And I said, "no, you weren't," and shook my head.  And more emphatically, he nodded, "yes, I was!"  Trust me, he wasn't!

This morning at home.  You can see the
"tools of the trade" in his bed.
There's his albuterol with his spacer, his
peach colored percussor that we use to
do CPT, and his bag mask, when he
decides that he wants extra help with
breathing.  And yeah, he's exhausted.
But as the day wore on, he started having stuff in his trach, and it was colored, yucky green/yellow colors.  It got thicker, he got sadder.  But he was still doing okay.  By 7 p.m., I decided with the direction that he was heading, I was going to try to get in a pre-emptive strike and started giving him albuterol.  That did help open him up more and it also helped release a lot of the junk he had so we could pull it out.

I wasn't sure if we would make it through the night, but hoped we would.  In fact, I was hoping we might even be able to just stay home.  Well, he made it through the night, in part due to his nurse doing CPT (chest physio therapy) almost all night long.  But this morning, I think he decided he'd been nice long enough.  He had let me sleep, but I was awake now anyway.

His chest x-ray from this morning.  Not great,
but not too bad either.  Frankly, it looks like him:
cloudy with a chance of junk.
Just before 7 a.m. he had a pretty bad desat.  Like, down into the 60% oxygen bad desat.  He wasn't moving even with a lot more oxygen, or actually he was, but it was lower, not higher.  That's how he ended up in the 60's.  So I bagged him.  It took several minutes to pull him back up into the 90's.  I kept going a little longer to keep him there, and then put him back on the vent.

I got about three minutes.  Nose dive, again.  So I started bagging again, this time giving him albuterol at the same time.  Andrew wanted to help, and I did need another pair of hands, so he bagged while I suctioned  and gave the albuterol.  Again, it was several minutes, ten to 15, before I could try putting him back on the vent.

This morning in the emergency
department.  He was a bit happier
when he had more support.
The albuterol bought us 30 minutes.  And again, we were bagging.   And I decided it was time to throw in the towel.  It still took a very long time to bring him up.  Now it was closer to 15 to 20 minutes.  In fact, based on the info I was giving them, dispatch sent a cop, too, in case they had to shut down the road for LifeFlight.  I guess they didn't realize I've already told Aaron he's not allowed another one of those.

So we came up here, lights and sirens, bagging him all the way.  We also were pulling a lot of junk out of him.  Once in the emergency room, they were able to get him back on a ventilator, but at significantly increased settings.

Now, he's resting, but he's pretty miserable.  He's tested positive for, wait, guess what . . . rhinovirus.  Yep, his ol' nemesis.  And we probably haven't reached the worst yet.  Fortunately, we've still got a lot of wiggle room in what supports we can get here in the PICU.

Please keep him in prayer.  This is going to be a rough time for him, and probably a longer stay, too.  I had all sorts of plans for spring break, including catching up on sleep.  We were going to get indoor/outdoor carpet put down on the ramp that our wonderful neighbor built.  I was going to recover the rocker that has seen so many, many hours of use since he was born.  I was going to put in raspberry plants, and even find my closet and laundry room.  But apparently Aaron felt like spring break needed a vacation trip.  Unfortunately, he didn't plan his destination as well as I would have liked.

But those things will still be there when we get home, eventually.  When I was a kid, my mom had a poem about babies growing up that hung on the wall.  And while he is my "forever baby," he won't "keep."  So this week, and probably the next and maybe the one after that, I'll focus on him.  And be so grateful that I can.

Oh, and if you want to see the quick, down and dirty updates, I do update his facebook page a little more frequently.  Plus, you won't (always) be subjected to my inner musings and wonderings. Here's the link for it.!/CompatiblewithJoy.Trisomy18.13

The cleaning and scrubbing can wait till tomorrow
But children grow up as I've learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!
I'm rocking my baby and babies don't keep.