Wednesday, December 31, 2014

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

Tuesday, December 30, 2014

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

Monday, December 29, 2014

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

Sunday, December 28, 2014

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.

Friday, December 26, 2014

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

Thursday, December 25, 2014

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

Wednesday, December 24, 2014

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.

Tuesday, December 23, 2014

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

Wednesday, December 17, 2014

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


Tuesday, December 2, 2014

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





Sunday, November 30, 2014

Sitting Pretty

Some might remember last fall when there was a nasty virus going around, putting otherwise healthy kids in the hospital.  Yeah, that would be the enterovirus that Aaron seems to have picked up.  When they told me on Friday night that he'd tested positive, it was all I could do to remain positive myself.

But one of the RTs helped.  She told me that yes, they had been hospitalizing otherwise healthy kids, but for some reason, kids that were already compromised seemed to actually handle it well.  And I clung to that, thinking that maybe it's because our kids know how to put their fighting gloves on.  After all, they've been dong it all their short lives.

We're still not out of the "peak" window, but if he continues along the path we're on, I'm quite hopeful that we'll get home soon.

I know part of it is because we've been very aggressive with his care.  They put him on a steroid burst the first night we were here to help relax his airways.  He's also getting CPT and albuterol treatments every four hours around the clock.  Plus lots and lots of suctioning.

Don't get me wrong, he IS sick.  But he's also handling it really well.  Silly boy even managed to dislodge his IV.  The things this kid pulls.  It looked like a massacre site in his bed.  Blood on his face, clothes, blanket, bed, and even the mobile hanging above him.  And him?  He was just laughing at us trying to clean him up.  Plus, notice how he's lying in bed.  His preferred position is sideways with his legs hanging over the edge.  But this is the first time since we got here that he's even tried to get that way.  Until now, he's been content to stay upright, lying straight.

And right now?  Right this very minute?  Well, he's entertaining himself by yanking on all his monitoring wires. Fun times, 'cause it makes funny noises when they come off of him.  His nurse and I are just shaking our heads.

Yep, our little guy is a fighter, and he's got his game on.  Lucky us.

We acquire the strength we have overcome. 
~Ralph Waldo Emerson

Saturday, November 29, 2014

Doing Better, For Now

Aaron's actually doing really well, at least right now.  In fact, he's been on home vent AND oxygen settings now for several hours.  We even transferred out of the PICU and onto the floor this afternoon.

IF (and notice that's a great big "if") he can stay here, we'll come home in a couple of days.  But the challenge is that they don't expect these viruses to peak for another 24-48 hours.  And remember, there are two different respiratory issues that he tested positive for.

Plus, he's starting to get more junky and we're pulling more "stuff" coming out of his trach. (Better out than in, right?) So we'll see what happens.

Right now, we're hanging out on the floor, continuing breathing treatments and all that jazz.  And we've even had a talk about how this isn't supposed to be a field trip to the floor, but rather the step towards going home.  But at the same time, if he struggles again, the PICU is only an elevator ride away, instead of an ambulance ride.

And it has been kinda fun to see some of the staff that I call friends up here.  I first met our PICU nurse over four years ago, on his very first trip here, with heart failure.  Over time, she's held my hand, taught me, cried with me and mostly, laughed with me.  It's been so good to catch up with her as she cared for Aaron over the past two days.  Plus, it was fun for her to see how big he is.  When she first had him, he was only just over 2 kg, not quite 5 pounds.  Now, he weighs 19 kg, or over 40 pounds.  I love that my son is considered a favorite patient, that he provides a pick-me-up for his nurses.

So we'll do what we have to, and make it home when we can.  But at least tonight, I'm cautiously optimistic that we won't be here too long.  That may change, but hey, live in the moment, right?

If you could travel back in time to the present moment, what would you do differently? ~Robert Brault

Friday, November 28, 2014

Here We Go Again

I was really hoping to be thankful for not needing medical help this weekend. Instead, I'm grateful for them. Yep, we're back again.

Aaron started needing more oxygen yesterday.  Not a whole lot more, but some. And he wasn't able to come down at all during the night, which is kind of unusual.  But overall, he was pretty good.

This morning I left to (try to) get some dental fillings for a couple of the boys. It didn't work so well. Just before they started on Joseph, Deborah called and Aaron was in trouble. I felt badly for those listening to my side of the conversation. The looks on their faces was a mixture of horror and pity as we left in a  hurry.

Back home, he was doing okay, sort of. He was really high on his oxygen, about 9 litters, but more or less maintaining.  When he dropped again, and we bagged again, I also changed his vent settings to give him more support. Each time we bagged him, he would actually do okay for a little while. Unlike past times, he would hang on for a bit and then slowly drift down.

I finally gave up at about noon and called for back-up. And the verdict? Rhinovirus and enterovirus. I'm glad we came when we did. Here's hoping it doesn't get too ugly.

Timing really is nearly everything. And what it isn't, circumstance makes up for.
Steven Van Zandt

Tuesday, November 25, 2014

Hooray for Ear Infections!


No, really, I'm glad!  Just over a week ago, I found Aaron with quite a bit of blood in his right ear.  He's got ear tubes in and our course of action is really simple.  Drainage (of any kind) and we start antibiotic ear drops.  We rarely see blood (like only one other time), so I also put in a call to the ENT because not only was there a lot, it continued through the night.

The nurse wasn't at all concerned, especially since I'd already started the drops.  But if it continued through the week, give a call back on Thursday or Friday and they'd squeeze him in the following week.  So I reminded myself that we'd gone down this exact same road a couple years ago (last time we had blood in the ear), tamped down my anxiety, and got on with the million and one other things going on.

By Friday, we still had a bit of brown drainage, so I called and they scheduled us for yesterday.  In the meantime, we also tried to upsize his trach.  Unfortunately, he didn't do so well with that one.  By Saturday night, I had to change him back to his original trachs.  I'm still a bit perplexed on that one.  All his vent output numbers were the same as with his old trachs, but his heartrate and respiratory rate became waaay too high.

Sunday, he was still kinda "off" and by Sunday night/Monday morning, his oxygen needs were high, too.  And frankly, if it had been the trach, that should have resolved long before them.  So he took Monday off of school.  (Again, third time in a row!  I'm beginning to think this kid's got something against Mondays.)  And my worry-meter shot up a bit more.  He was doing okay  when asleep, but eating or awake, and even better when both eating and awake, he was needing way too much of that good O2, like about three times more than usual.

So the plan was to head into the ENT appointment, see what they found, and then probably head over to the emergency room for a cardio work-up.  'Cause it wasn't his lungs.  They sounded good and I wasn't able to pull anything out of them.  It was pointing towards worsening pulmonary hypertension tending towards heart failure.  And the anxiety ratcheted up a bit more.

BUT, when we got to the office and she pulled up the microscope and pried his tiny canals open, there it was.  His tube was intact, but completely blocked up again.  And when she suctioned it out, drainage started pouring out from behind the eardrum.

Poor baby.  He was not happy at all.  He was a real trooper, but imagine someone putting a speculum into your ear, and then deep suctioning it out.  Not only the feeling, but also the noise.  And remember, he doesn't hear so well through those ears because his canals are collapsed.

At first it was the startled eyes, then a big pouty lower lip.  It startled to tremble, and the crocodile tears started.  Finally, the whole body shudders and sobs joined in.  My heart both ached and was glad.  Ached for his pain, but rejoiced that we had a good and easy answer for his instability.

And funny enough, by the time we left the hospital, his oxygen needs had already dropped by almost half.

He's still not 100%, he's a bit more tired than usual and on a touch more oxygen, but I'd put him at 95%.  So yeah, hooray for ear infections.  'Cause it's so much better than the alternative.

If you don't get everything you want, think of the things you don't get that you don't want. 
~Oscar Wilde

Friday, November 21, 2014

A Bigger Pixie Stick

Aaron's been getting a lot more plugs lately.  We had our first one back in August, like, first one EVER!  Which is quite an accomplishment for a trach kiddo.  But since then, we've had a few others.  Including one a week ago, and one exactly a week before that.

So I put in a call to our good ol' Trach Whisperer.  She claims it's because he's getting bigger, who'd have thunk?  Apparently, the bigger you get, the bigger your boogers.  (Sorry, it's a fact of life.  He's got them, I've got them, we've all got them.)

As long as he was breathing well, meaning oxygen (O2) in and carbon dioxide (CO2) out and no plugs, we were good to sit where we were.  Which was with our original trach size.  Yeah, the ones he got back when he was a little 4.5 kilo (about 10 pounds) munchkin.

Now he's a much bigger munchkin, like closer to 18 kilos, or about 40 pounds.  And guess what, when your outsides grow, so do your insides.  So he needs a bigger trach.

We don't actually go in to trach/vent clinic until January, and the thought is that since he's still ventilated, he'll need a cuffed trach again.  But the whole reason he was trached has resolved, like, resolved almost two years ago.  And yes, he's still on the vent.

But if he's got a bigger tube, could he breathe better, maybe even off the vent?  Could he maybe get away without the cuff?  I even asked for permission (instead of forgiveness like I usually do) to see if I could try him on the bigger size without the cuff.  I thought I had one or two larger trachs in the basement.  Unfortunately, no dice.

So I asked some of my awesome friends in the special needs world if they had any spares.  I mean, I've got any number of neighbors that I could borrow a cup of sugar or a couple eggs from.  Trachs, well, not so much.  And they are all sorts of sizes and styles of them when you do find someone who's using one.

And just down the road is a girl who's cute daughter uses the bigger size we need.  And she had an extra!  It doesn't have a flex-end (the flexible part that is on the outside, makes it so the vent tubing doesn't pull so much on him), but it's the right size for the inside of him.  I waited until this afternoon to try it.  Frankly, if he's not going to tolerate it, I don't want him at school, or even better, on the school bus when things go south.

The new trach, with our own version of a "flex-end" on it.
And so far so good!  He IS pulling the vent tubing off it at an alarming rate.  It just pops off much easier than the flex-ends.  But it's a really good starting place.  And another friend in California put two of the same size, but with flex-ends, in the mail for me and they're supposed to be here tomorrow (which will keep my monkey from disconnecting himself every five minutes.)

So I'm watching, carefully.  If he starts to hold onto too much CO2, we'll have to go back to his old trachs until we can get a cuffed one.  And I'll probably wait until we are seen to do that.  But if he can maintain well, if he keeps his respiratory rate and heart rate down, stays playful, we'll keep him right where he is.

And maybe, maybe, just maybe, this will be the key we need to breathing on his own.  Who knew a millimeter could make such a difference?  Going from breathing through a 3.5 millimeter opening to a 4.5.  I wasn't kidding when I called it a pixie stick.

Life loves to be taken by the lapel and told: "I am with you kid. Let's go." ~Maya Angelou



Thursday, November 20, 2014

More Than One Way to Skin a Cat

Ever since he was teeny tiny, when he couldn't even open those itty bitty fists, Aaron has tried to scratch his eye.  Not his eyelid, not his eye area, his eye, the eyeball.

On his right hand, the pointer finger was the only one he could extend, and he would take that finger, and put it in his right eye.  That finger, that eye, almost four and a half years.  Owie!  At least for Mom.  He seems to like it (whatever!).

Most of the time we can distract him, play with him, something.  A couple days ago that wasn't working.

So I got out his no-nos.  Yep, just like telling a little kid, "no, no, no."  They're designed for kids after cleft surgeries to keep them from playing with the surgical site.  Straps around the arm and they can't bend the elbow.  Also works for keeping little fingers out of eyes.  (grin)



I wondered how long it would stay on, maybe 15 minutes or so?  Try about 15 seconds.  But after that, he was happy to play with the no-no, in his right hand!  So it worked, right?  After all, the goal was to keep the finger out of the eye.

Gotta keep those goals in mind.  Good thing for this mama to keep in mind, too, as we work towards new heights.  Going to be some changes in his trach over the next little while.  We'll be trying some new things this weekend while he's with me all the time to keep an eye on things.  If they work, great. If not, we'll wait until our check-up in January to change things up a bit.  But this kid's growing, and so are his needs.  Gotta love that, really.

video

The best angle from which to approach any problem is the try-angle. 
~Author Unknown







Wednesday, November 12, 2014

What Love Looks Like

Aaron's getting big.  Which is a good thing!  This tiny kiddo is growing right up.  I think he finally made it into 3 month clothes around nine months old.

I know he had barely grown out of his preemie clothes and into newborns at four months.  But he's really made up for it since then.

Cuddling with Gramma and Grampa on his new rocker.

He's four years old, almost 40 pounds, and wearing 5T clothes.  He's bigger than any of his older siblings were at this age, but he still struggles with muscle control, and really, he still needs the support a baby gets.



I've had a wonderful, high quality rocker, a gift from my aunt and uncle that has seen thousands of hours of use.  But it's been getting a little small for our needs.  It's gotten harder to hold and cuddle him in there.



So when my parents were here in May, I asked my dad if he'd ever seen plans for a glider loveseat, or something like that.  Something I could comfortably cuddle with Aaron and rock him.  My dad is an AMAZING woodworker.  Frankly, it's a passion for him.



He and Mom took pictures of my rocker from just about every angle, wrote down measurements, and he said he'd see what he could come up with.

Oh, my....


They brought it up this past week, and dreams and hopes just didn't do it justice.  He even did the cut outs underneath and the carvings on the ends.









It is sooooooo comfortable.  And so incredibly beautiful.  And it adds so much to Aaron's quality of life.  It's much easier to rock and cuddle with him.





And even Andrew can get him in and out of bed and rock him now.  With the other one, he needed to be sitting already and try to balance him on his lap.  And heaven help us if Aaron decided he was wiggly.

Six months of loving, painstaking attention to detail.  Six months of measuring, measuring, and then cutting, sanding, carving, polishing.  I have no idea how to say "thank you" for this.  So often it's a struggle around here to make things work, make them comfortable.  I am completely overwhelmed.  

 Love is, above all, the gift of oneself. ~Jean Anouilh

Thursday, November 6, 2014

B is for Breathing

Aaron is learning his ABC's at school.  Remember Dr. Suess ABC's?  "Aunt Annie's Alligator, A...a...A."

Well, today was the letter B.  And this kid needs some work on it.  He's been struggling a little bit more with his asthma, figured it was probably the weather.  But the big change was last weekend.  In my mind (probably not the safest place to play), he should have been fine by now.  Someday, SOMEDAY, I'll remember to ask HIM what he thinks.

Last Friday, Halloween, he pulled a "trick" on us with a significant asthma attack at school.  We put some measures in place, and then weaned back.  He was doing great! (we thought).  And then today, he started again, at school again.  (His poor nurse.)

She called me and started albuterol.  Okay, no problem.  Except she called back again, because he really wasn't responding well.  His sats were okay, but he was working hard, and not looking very happy.  So I went down to get them, and called the pediatrician on the way to see if he could be seen.

Got there, and yeah, he was pretty lethargic.  Again, vital signs were okay.  And "okay" is a good description.  They weren't scary, but they certainly weren't great either.  We put him in his wheelchair to take him out to the car, and I thought, "let's just make sure we don't have any kind of plug in there."  Wasn't sure where that came from.  He's gotten pretty good at being obvious when he's got a plug, and I didn't see any sign of it.  I quickly figured out that the Spirit must have been whispering to me.

I passed his suction catheter down to make sure the trach was open, or at least I tried  to pass it down.  It stopped just before it should have.  Weird, 'cause he wasn't showing any symptoms.  Tried again, again, no dice.  We transferred him quickly back to the floor and changed out his trach.

What was in there?  A nasty, sticky plug, totally occluding the bottom trach.  Think of a thick ball of old ear wax.  That's the consistency and texture.  Gross, and unbreathable.  It couldn't have been there a full minute, somehow it dislodged from further down and had just migrated up there, probably when we transferred him to his chair.  

So the doc put him on a 3-5 day course of oral steroids (which I could have done had I been thinking), and he's already looking a whole lot better.  At some point in time, I may actually remember that if he's using more oxygen, and he's needing albuterol, maybe, just maybe starting the steroids might be a good idea.

So where's he at right now?  After a single dose of steroids?  Well, "lethargic" would NOT be a good word to describe him.  And he's on less oxygen than we've seen in a couple months.  Yep, I think we've found the magic bullet for this time around.  B is for Breathing.

Improper breathing is a common cause of ill health.
Dr. Andrew Weil

Thursday, October 30, 2014

A Public Service Announcement

T-shirt they gave Deborah with her
flu shot at BYU.
It's that time of year again.  You know, sweaters and pumpkins, frosty mornings and hot chocolate, aaaaaand coughs and fevers and sneezes.

If you want to hang with us, with Aaron, be invited into our home, PLEASE get a flu shot!  If you choose not to, I can respect that.  Please respect that we won't be able to be with you until flu season is over.

I get that some people don't like needles (hey, you're looking at one of the biggest needle babies right here!)  I know others don't trust the vaccine.  Whatever, really, it's your choice.

But last year, 107 kids died from the flu, and 96 of them had not had the vaccine.  I know that doesn't seem like a large number, and you're right it's not.  It's a tiny, infintisimal number compared to the number of kids in the country.

Except if your child is one of those 107.  Then it's a huge, mind boggling, soul numbing number.  And I aim to do everything I can to not have my child be one of those crushing statistics.

Besides, I had the flu once.  24 years ago come January.  Yeah, it was that fun.  And frankly, that's a trip I can skip without any regrets.  So come on, jump on the band wagon, and help protect the little ones around you.  Little ones like Aaron and your sister's new baby.  We'll thank you for it.

An ounce of prevention is worth a pound of cure.
-Benjamin Franklin




Sunday, October 26, 2014

The Lord Is My Shepherd

It's been a rough weekend, emotionally, mentally, brought on by someone outside the home making some poor choices.  And it's not over yet.  Then, I left my purse in the parking lot at Wal-Mart yesterday.  Fortunately, it was still there when I got back.  Plus, we've got a lovely weather change going on, which causes significant sinus headaches for me, and asthma flare-ups for Aaron.






Needless to say, I was sitting in church today feeling pretty sorry for myself.  And pleading, once again, with the Lord for comfort and guidance, and just to feel His love a little bit more.  And as always, He was there for me.  Our opening hymn?  The Lord Is My Shepherd.

I don't know about other people, but when it's a familiar hymn, I sometimes see images in my mind.  As we sang, scenes from my life, my weekend, played through my mind.  Juxtaposed with the stressful times were images of a crazy goal scored by one kid, and goals saved by another.  And others having fun cheering on brothers or hanging out with friends, a daughter all dressed up to compete.  I could feel Him by me.  Regardless of how things play out over the next few days, He is with me.  He is my shepherd.  What more can I ask of Him, than to stand by me, to guide me through the valleys.  No want shall I know.

So once again, I try to turn to the good things, the good times.  And there were good times this weekend.  We finished out the soccer season with two wins (one for a team that has never won before, yea!!), and one loss.  And the weather was gorgeous!  I finally got around to taking the fall pictures of my kids.  It's only the younger five, because once I spend a fortune on Senior pictures, they get to be 17 forever.  And that was actually fun, too.  Aaron was a riot, trying to get him to look at the camera while smiling was quite the trick.

All in all, I have to say, I'm walking in green pastures and yes, my cup runneth over.

 But they that wait upon the Lord shall renew their strength.
Isaiah 40:31






video

Some of the funny times trying to get a good shot of this kid.

Thursday, October 16, 2014

Oh, my, where to even begin.  Yesterday was soooo full, in the very best of ways.

Sisters:  Birthday girl and missionary.  Love this!

It was Deborah's birthday (although we're celebrating on Sunday).  I have been so blessed to call this girl my daughter, and now my friend.  I always dreamed of having girls that could grow up and be my friend, and reality has turned out to be even better than the dream.  Especially in the last few years, she's been by my side, working and helping to keep things going.  Love that girl.

And Mary came HOME!  Back early in her mission, she counted out the transfer cycles and sent us an email saying that if she calculated correctly, she'd be coming home on October 15th.  Deborah fired back that she was holding her to that birthday present.


I simply couldn't sleep the night before she came home. Finally gave up and got up at 5:30.  I'd made her cake before and it was waiting for her at home.

We got to the airport, and I felt like I couldn't even stand still, bouncing back and forth on the balls of my feet, trying to see up past the escalator, down the corridor.  Absolutely impossible, but it didn't stop me from trying.

Waiting for her with signs we made in Family Home Evening.












Finally, FINALLY, there she was.  My beautiful second daughter, coming down the escalator.  I waited as long as I could, and then the tears (which had been threatening all day long, by the way).  I had her in my arms again.  Until that moment, 18 months really hadn't seemed that long.  But at that moment, I think I felt every single one of those days.






Something that's been on my mind a lot as her homecoming has gotten closer has been Aaron.  He made it.  He's still here.  When she left (and David and Jonathan), she didn't know if she would ever see him in this life again.  Another thing I shoved deep into the back of my mind.  Some thoughts just don't bear being considered, but then, they have to be.

I've been realizing that if/when he passes, I'm going to have to go dark on social media.  (And no, just because I haven't been on much doesn't mean something bad is happening.)  But my children deserve to get this news personally, from me or from someone close to me.  And they deserve to
know first.  But right now, they're scattered, and that's going to continue to be the case probably from now on.  One of the realities of my life is that I have emergency numbers for each of their missions in my cell phone.  That's just the way it is.  But she's here, and so is he.














Another part of October 15th is that it's Pregnancy and Infant Loss Day.  Across the globe, we cast a wave of light remembering these little ones.  From 7-8 p.m. in each time zone, candles are lit to remind us.  I have to admit, I wondered about doing that this year.  It was Deborah's birthday.  We were having family over to see Mary.  She was being formally released as a missionary at 7:00 p.m.





But then Deborah's alarm (yeah, the birthday girl) went off at 6:50, as a reminder to light those candles.  And I figured that if the birthday girl wanted to do this, it was a good thing.  So we lit them, and I was glad I did.  I have so, so many families I remembered during that time.  The gentle glow of light was a soft reminder of the sweet souls we all miss so much.  Sweet angels, watching over their families, and missed so desperately.



God gave us the gift of life; 
it is up to us to give ourselves the gift of living well.
Voltaire