We're Home!!

He's home!  It's "Christmas Eve."  And Santa will be coming tonight.

No, he's not "all better" but he's close enough.  So we'll keep working on getting him better.





And he's going on lock-down.  Nope, not going out except for doctors and school until spring.  Really, I saw things at the hospital that would chill your blood, normal, typically healthy kids laid low, comatose and in multi-system organ failure by these viruses.

Yep, we'll be trying to skip those.




But tonight, tonight is Merry Christmas.   The rolls are baked, the ham is almost done, and the cinnamon rolls are rising.  We got our Christmas miracle.  Yes, there is a Santa Claus.  And the Spirit of Christmas, of love, it's here.  I'm so grateful for all the prayers that have gotten us so far.

Christmas waves a magic wand over this world, and behold, 

everything is softer and more beautiful. 

~Norman Vincent Peale

Waiting on our Christmas Miracle

I went home last night.  Didn't quite "hit a wall," but yeah, I took a brief break.

Aaron did manage to stay on the floor, but it was by the skin of his teeth (and the fact that the PICU is busting at the seams).

I hand picked my nurses, nurses that keep their cool, have extensive trach/vent experience, and absolutely adore Aaron.  He was in good hands.  And I slept in my own bed, saw my other kids and my husband.  It was very needed.

I woke this morning with some different ideas and called the doctor.  His lungs are bronchospasming.  In English, that means he was having spasms, or sudden tightening of his lungs, which makes it just a tad hard for him to breathe and certainly difficult to get that good ol' O2 into his cells.  Ever have spasms in your back?  Yeah, same thing, but in the lungs.  Not fun.

We've been treating him with his rescue meds around the clock, but I questioned if he was really getting his full dose.  See, most inhalers are prescribed for 1-2 puffs, maybe three if you're really in trouble.  We start with 6. And then sometimes go up from there.  Then there are oral steroids.  While there can be some nasty side effects with steroid use, it does help relax the tightness.  I don't know, side effects plus breathing vs no side effect and not breathing.  I vote for the first one.

And so far, we think it might be working.  He's certainly better than he was last night.  The doctor actually told me as I left last night that she would not be surprised if he ended up in the PICU before I made it back.  They'd call if/when it happened.

They didn't call, and he was in the same place that I left him.  But I'd talked to his doctor and nurse earlier this morning and gotten the steroids on board.  It's been a few hours now, and we're already seeing some positive signs.  His air movement in his lungs has improved, his oxygen needs are dropping.  I think we're going to adjust the vent fairly soon.  It's working, it's really working.

And the power of prayer is so real.  Just after our cry for help went out, hundreds of prayers came pouring in.  This child that was on the fast track back downstairs stabilized, then improved, not by much, but that was all we needed.  We needed a little wiggle room, and that's what we got.  Such a blessing, such love.  We are so grateful.

"Christmas will always be as long as we stand 

heart to heart and hand to hand."

Theodor Geisel

Quick Update

Just a quick update here.  The last 24 hours have been a bit of a ride.

We switched Aaron to his home vent on his home settings yesterday morning, and as I guessed, things changed up a bit when he woke up.  There was a question as to whether or not he would even be able to stay on the home vent, but he did manage to push through it.  He had to be bagged a couple of times, but they were a few hours apart, and then he'd settle down and do okay.

This afternoon, they moved us up to the floor, and he started struggling again.  I lost count of the times we bagged him in the first hour and a half we were on the floor.  And that was after increasing his oxygen to 15 liters.

We didn't even get very far until we increased his PEEP (the pressure you always have in your lungs) while bagging him.  But back on the vent, he struggled again.  Finally, we changed his vent settings entirely, and right now, he's doing "okay."

We're watching, and his doc has parked herself right outside our door working on paperwork.  He's getting a breathing treatment right now.  Frankly, if he can't maintain, we're going to rapid response back into the PICU.  Been there, done that, but never quite this fast.  We've only been out for two hours now.

So please, pause a minute and say a prayer for our little guy, and the rest of our family.  It's looking like we'll need a miracle to get him home by New Year's.

“Be realistic: Plan for a miracle” 

― Osho

Being in the Hospital and the True Blessing of Christmas

We're still making progress here.  Aaron is making an attempt at his home ventilator this morning.  He's on about a bazillion liters of oxygen (okay, only 12, but still...)  So far it's been about four hours and he's holding on even through a breathing treatment.  He's been asleep except during that treatment, and it may change things up when he wakes up, but so far so good.

We're still a long ways from home.  Twelve liters is even too much to go to the floor.  We usually have to be between 8 and 10 for them to even consider it.  And the breathing treatment was really sad.  I don't get it.  Usually he absolutely loves the shake vest, but something this time isn't sitting too well with him.  Almost every time it produces big tears and wracking sobs.  So painful to only be able to hold his hand and tell him, "I know, I know, but you can do this."

Church today was thought provoking.  The speaker started out by painting a picture of the Norman Rockwell.  You know, white Christmas (had that!) family, good food, fun times, presents under the tree, wide eyes.  Well, for me, and for several others there, it just wasn't what happened.  Instead, it was a hard week, a really hard week.  I don't remember seeing him so sick before, so miserable.  Maybe my memory protects me, but oh, it was bad.  And honestly, for a lot of others up here, it's been rough for them, too.

I LOVE Christmas.  It's my holiday.  I love the kids putting their presents to each other under the tree.  The Christmas story being read, carols.  Cinnamon rolls (with chocolate chips!) baking for Christmas breakfast, a Christmas ham on Christmas Eve with the leftovers reserved for snacking on through the next day. Wassail and hot chocolate on the stove. The beauty of the Christmas tree all lit up with presents that magically appear.  The long lazy days afterwards where we just get to be together.  In fact, that may be the part I miss most of all.

We didn't have that this year.  Heaven willing, we'll get most of it on New Year's Eve.  I'm praying that we're home by then.  But we can't get back those days.  They've gone on.  And I have to be okay with that.

I ache for my other kids who've given this up, too.  THEY voted to wait until we could come home to be together as a family.  They put off their Christmas Eve and Christmas Day.  I think they're often forgotten.  So much focus on Aaron, on his needs, and they give up so much for him.

BUT, if I will but turn my focus to where it should be, I know, I truly know in my soul, that it can all be good.  Learning to sacrifice for others deepens the soul, enlarges the heart.  And they want their little brother there.  At some future Christmas, our own Tiny Tim's crutch will lie by the fireside, alone and ownerless.  I don't think they wanted to miss out on him being there any sooner than they have to.

I know that the Savior whose birth we celebrate, whose life is the whole reason for this season is there for us.  It is through His atonement that broken hearts and souls are healed.  Not only are sins forgiven, but wrongs to innocents are paid.  He paid for them all.  An INFINITE, without ending, sacrifice for me, for Aaron, for our family.

The special musical number today was "Come Thou Fount of Every Blessing."  Every blessing, every single one, comes from Him.  I need to stay fixed upon that.  I will remember what He has done, and is doing for me. I will sing praise to Him.  May He take my heart and seal it for His courts above.  Oh, I pray, I will remember.

Here I raise my Ebenezer

Hither by Thy help I come

And I hope by Thy good pleasure

Safely to arrive at home

Waiting on Father Time

Tincture of Time, Father Time, Time Lapse, Wasting Time, Killing Time, Spending Time...

It's all about Time.  That seems to be what Aaron wants and needs.  And what he needs, we try to give him.  No different here.

Not much change, but at the same time, I think some important changes.  We're still pulling junk out of him, he's still struggling with his breathing treatments. (By struggling, I mean needing 100% oxygen and having a hard time maintaining adequate saturations.)

But they've also decreased his ventilator support to very close to his home settings (minus the oxygen needs, of course).

He slept AAAALLLLLL day yesterday, which did worry me a little bit.  I figured that the next 12-18 hours would tell us if that was a good sleep, or an "I'm so exhausted, this is not going well" sleep.

Actually, it only took about two hours to show us.  It was a good sleep.  He then played AAAALLLLL night.  In fact, at 2:00 a.m. I informed him that even if he didn't want to sleep, I did, and I took away the noisy toy he was playing with.  He grinned and started playing with the quiet ones.

So he's also slept quite a bit today and I think he's getting ramped up to play with the night staff again.

We've got quite a ways still to go before we can go home.  He's only on 65% FiO2 right now, but he's sleeping.  When he's awake it's closer to 85% (except during treatment when it's 100%).  He needs to be consistently below 60% and closer to 50% before we can try to switch back to his home ventilator from the ICU vent.  And then we'll have to work on getting him lower  from there to where we can go home.  It's not going to be happening today or tomorrow, but maybe by early next week???  We can hope right?




Anyway, he is having fun.  A friend even brought by a really fun toy for him that we'll get out tomorrow.









Santa's helper dropped off a couple things yesterday, and when he woke up, he was fascinated by the snow globe.  I love the look of wonder in his eyes.

“I am beginning to learn that it is the sweet, simple things of life which are the real ones after all.” 

― Laura Ingalls Wilder

Christmas Thoughts

It's Christmas morning, and unlike any of the others I've know.  I'm sitting in a PICU room with Aaron while the rest of the family is elsewhere.  David is in Oregon, Jonathan in Argentina, and the rest down in Alpine.

Because this years' viruses are so prevalent and so nasty, they're not letting non-patients under the age of 14 in, even on Christmas.  Just yesterday morning, they admitted 5 kids to the PICU in less than 4 hours for influenza and other respiratory viruses.  It's bad, really bad.

So William and the kids are staying home and we're up here.

But that's okay.  It is what it is, and we've still got Aaron, something that might have been different had we not come when we did.   I mean, what was kinda ugly here in the PICU would have been downright untenable had we been at home.

There's a song called "Christmas Shoes" that I think is on one of the "most hated Christmas songs" list.  Little boy wants to buy shoes for Mommy so she'll look pretty when she meets Jesus that night. It's kinda sappy, kinda sad, not the thing you usually want to associate with Christmas.

But a couple weeks ago, we were at a dance concert where it was danced to by the company.  No way to turn it off there.  And as I sat there, I have to admit, tears filled my eyes. 'Cause what no one wants to think about is that for some, it's reality.  There are those who said "good-by" last night, others today, and still more in the next few days.  For some families, Christmas isn't just a time of joy, it's also incredibly painful.  And as I sat there, I wondered, in the back of my mind, if something would happen that would change things for us.  And it almost did.

He's doing a tiny bit better.  Still needing lots of support and pretty tired. They're also starting some antibiotics because he's starting to grow out some nasties in larger quantities from his trach. But his playful side is coming back.  And they're doing their very best to take care of us here.  I woke this morning to a cute gingerbread house, a stuffed animal, a light-up toy and a blanket delivered by Santa's helpers.  A yummy breakfast, some gifts in the Ronald McDonald room for him, and the hospital is doing a nice Christmas dinner for all the patients' families and the staff who are here.

And I thought this morning about all the military families, who are away from their families for an extended period of time.  They're not planning to be together anytime soon.

So it's snowing, a white Christmas, and we'll celebrate next week with the ones who are here in Utah.  Santa has graciously told us he'll visit on New Year's Eve, and I have no doubt it will be good.

"Christmas day is a day of joy and charity. May God make you very rich in both." 

Phillips Brooks

Where's Baby Jesus?

Twenty-some years ago, my mom made a soft nativity for the kids to play with.  All the pieces can be moved and played with, but the one that kept disappearing was the Baby Jesus.  It became an oft repeated phrase at Christmastime:  "Where's Baby Jesus?  Who's seen Baby Jesus?"  And He would be found, eventually.

That phrase has made me think over the years.  Where is the Baby Jesus?  Can we feel His spirit?  How is He evidenced in our lives?  All over my house I have Nativity scenes scattered and at the focal point of each is the Savior.  Is He the focal point of my life?  Or do I forget and "lose" Him?

I am so blessed by so many around me.  This morning I had a yummy breakfast prepared by a family who's grandson once spent six months here at the hospital.  They wanted to give back.  Right now, there are a couple of music therapy girls in here, singing quiet Christmas songs to my oh so sick little man.  That's probably as good a medicine as anything else we're giving him.  The phone calls, the Facebook messages, the visits with friends.  Such an abundance of blessings.


Yes, Aaron is sick, and yes, there are places I'd rather be, but it is what it is.  And that's okay.  Santa will come see us on New Year's Eve and I'm hoping Aaron is well enough to be home by then.  The kids will make the candy cane sleds for races and come see us tomorrow.  (Just a note, if you've never done candy cane sleds, I highly recommend it.  So easy and tons of fun and laughter!)

As for an Aaron update, there's not much change, which is actually okay, too.  He might be doing a tiny bit better, but he's certainly no worse.  We've had to increase his ventilator support by quite a bit, and his oxygen needs are still high.  He's sleeping or just lying there most of the time, really, he's using all his energy just to fight this cold.  He's got quite a ways to go.  We will very much be sitting in the PICU for Christmas Day and quite a few thereafter. But my ugly scary thoughts of yesterday morning are tucked away again and with some Tincture of Time, he'll pull through.

And tomorrow is Christmas Day, the day we celebrate our Savior's birth.  Most years are so busy, this one there will be plenty of time for reflection and gratitude that while we may be in the hospital, he's stable and we have the equipment and expertise to help him.  We'll plan to Skype with our missionaries and have the family come up for a visit.  I'm pretty sure that's a good way to keep Christmas Day.

For unto us a Child is born, unto us a Son is given ... The Prince of Peace.

We'll Be Home For Christmas ... If Only In My Dreams

Yeah, the title seems to say it all.  It looks like we're going to add Christmas to our list of holidays in the hospital.

The change up in trachs went well last week, and it looks like just in the nick of time.  Aaron  got sick on Friday with a fever and more "stuff" in his trach.  But the fever was short-lived and the goop was more froth than goop.  (Hopefully that walks the line between some info and too much info?)

By Sunday, he was doing pretty well, in fact, I actually wondered if we should have gone to church anyway.  Monday afternoon, he started to head the wrong way.  Trach secretions turned yellow and thicker.  Monday night, he popped another fever, 38.7 (101.7) and so I decided we needed to get checked out.  I was hoping it was a new virus, and we'd come home, but there was also that chance that it'd turned into a secondary bacterial infection.

I totally discounted (ignored, buried my head in the sand, fill in the blank with the appropriate term of De'Nial) the possibility that it might be a new virus we COULDN'T handle at home.

His x-ray actually looked pretty good, a little patchy but pretty much his norm.  They only sent testing for RSV and Influenza A and B, and those came back negative, too.  Blood work was nigh unto impossible, the kiddo just wasn't letting anyone have access to his veins.  The ER doc talked about just putting him on an antibiotic to cover any possible infection and sending us home.

The problem with that is Aaron ends up on a lot of antibiotics.  You know those warnings about too many antibiotics and resistance, etc?  Yeah, a very real risk for him, so I wanted to get those labs and see actual evidence of it first.  So they called down a peds nurse from the floor.  Even she couldn't get them.

In the meantime, Aaron decided he was bored, or something.  He started coughing up all sorts of nasty stuff, and desatting, too.  When he hit 76%, I rang the staff button and told them we needed help, and got his bag out and started bagging him.  He ended up on 15 liters for a while.  We were able to wean down to 10 liters, but that's still way too much for home.  My oxygen concentrator only goes to 10 liters, so no wiggle room at all.

In the end, he was enough of a mess that we actually ended up Lifeflighting up here.  He was dicey enough that the PICU doc wanted him brought in by a pediatric team, and the ground crew had just left to go pick up another kiddo (actually upstairs from us at American Fork Hospital).  And with the way he was trending, they didn't want to wait the several hours it would take to have the ground crew transport the one child, and come back and get us up here.  Frankly, in the end, coming by chopper was probably a pretty good call.

So he got his second chopper ride, and I even did okay on it.  It was actually really smooth.  I've been on rougher car rides on some freeways.  He got the same Lifeflight nurse that picked him up four years ago at the house and now we're in the PICU, on their ventilator, using a lot of oxygen and pulling thick, green glue out of his lungs (yeah, you read that right, "glue" not "goo").  And we're both pretty wiped out.

So along with a couple Halloweens, a Thanksgiving (and a couple more Thanksgiving weekends) and Mother's Day, we'll add Christmas into the mix, 'cause ain't nobody thinking this kid's going to be out of here by then.  We probably won't even be out of the PICU by then.

Santa will probably come later for all of us, and we'll just work it out.  It's not my favorite way to spend the holiday, but it could certainly be worse.  There are a lot of tiny stones in cemeteries being decorated for Christmas.  I remember so vividly standing over his cradle on Thanksgiving morning four years ago, crying that I just wanted one Christmas with him.  We're coming up on our fifth.  He's still here.  I don't get to only see him in my dreams.

Yeah, it could be much, much harder.

May Peace be your gift at Christmas and your blessing all year through! ~Author Unknown

Fun With Trachs, or All I Want for Christmas is WHAT??

Yes, I realize it's been a while since our last post.  In my defense, Christmas is just one week away, and I need about another two plus weeks to get everything done.  Some things just had to slide, and social media seemed to be the best bet.

But I needed to post a quick update 'cause it seems that Aaron and Santa may have had a talk that I wasn't aware of.  And we could use a few prayers tomorrow.

I don't know if you've noticed, but Aaron has been having more and more "fun" with his trach.  We've had those nasty plugs that seem to come out of nowhere.  I'm thinking it's not a good thing that I'm actually starting to become comfortable with them.  After all, who gets comfy with their child suddenly not being able to breathe!

There was talk of up-sizing his trach.  I hoped (and frankly am still hoping) that we can soon go to an uncuffed trach.  With that in mind, a few friends sent me some uncuffed trachs in the size we're moving to.  That didn't work initially, but I had high hopes of trying again over the Christmas break.

Then there was this last Sunday.  Yeah, the day after Aaron chatted with Santa.  See, his new cuffed trachs have been ordered and are in.  But he didn't have an appointment to get them until mid-January.  His stoma (the actual opening in his neck that it goes through) is too tight to be able to just slip the larger cuffed trach in, so he has to go in and have it dilated, or widened.  And I'm guessing that a new trach must have been on his "must have" list.

Sunday afternoon, I went to do a trach change, just like (literally!) hundreds I've done before.  I mean, I've changed out that trach every 1-3 weeks for over four years now.  So we're talking somewhere in the neighborhood of 200 trach changes.  Some easier than others.  But they've always worked out.

Not this time.  I have no idea what happened, but that trach wasn't going in.  I tried, and tried, and grabbed his back-up smaller trach.  Thank goodness, that one went right in.  So we let him rest a minute, and tried again.  I tried FOUR TIMES! to get that blasted tube in him.  No dice.  It was time to try something else.

See, while the back-up tube does give him a secure airway, he won't ventilate real well on it.  So he couldn't just stay on it long-term.  I put in a call to the local community hospital and they said they could probably help out.  At least I didn't have to haul all the way to Primary Children's.  Ten minutes vs 60 minutes, I'll take that.

In the end, we did get the right trach in, but it took the ER doc, the respiratory therapist and I to do it, and yeah, we SHOVED it in.  It was much harder than it should have been.  Bright and early Monday morning, I was on the phone with our trach whisperer.

The outcome?  We're being slotted in during the lunch hour tomorrow morning to be seen, and to have his (already too narrow for the current trach) stoma widened for his newer, bigger trachs.  I'm a little nervous about the whole thing.  What this kid will do to get what he wants...

I believe in prayer. It's the best way we have to draw strength from heaven. ~Josephine Baker

Home!

We're Home!  YEA!!!

He's still gunky, still sick, but sick like most of us do it.  You know, feel yucky, need tissues (or suction), want to sleep.  But with oxygen and vitals in a good spot.  So yea!!

As far as admits went, this was an easy one.  And we hit the nurse jackpot, too.  Our PICU nurse, both days, was an old friend.  And then the four days on the floor were the same way!  (Okay, one PICU day and one floor day, actually equal one day, 'cause we spent part of Saturday on each.  You know, 1+1=1, right?)  Then at night, we also had old friends except in the case of one night, then we made a new one.  I'm sorry, not all nurses are created equal. Some are simply much better than others.  And that's where these fall.

Funny thing, today's nurse mentioned it was kinda weird that Aaron was easily the most stable kid in the pod (I think eight total), for which I'm grateful!

Anyway, more tools in the toolbox, more stamina and strength in the kiddo.  I'm liking this combination.  It should get us through.

Oh, and if anyone local is getting rid of a reliable washer and dryer just a'cause, could you let me know?  My washer is on the way out, and my dryer has completely given up the ghost.  Fun times when you've got a kiddo with the antibiotic runs going.

There is nothing like staying at home for real comfort. ~Jane Austen