Saturday, November 30, 2013

And a Slide to the Side

Just a quick update here.  Aaron looked really good for most of yesterday.  We had a few bumps, but nothing too terrible.  He had a rougher patch during the night, but that also may be a bit of my own perspective.

He had been alarming, although not with the greatest wave form (way to tell if it's "real" or not) for quite a while.  His nurse wasn't checking on him, just hitting the "silence" button out at the desk.  I finally told her, very directly, that she had a responsibility to actually check him.  Yeah, I wasn't real impressed, but I'm sure sleep deprivation played into it.

Anyway, this morning, his heart rate has climbed a bit, and his face is kinda "soggy."  We've pulled out some thicker yellow gunk from his trach, too. 

So rather than take him home and risk turning around and coming back in a couple of days, we're going to watch him for another 24 hours or so.  Lots of fun. 

Please keep us in your prayers.

Fortune knocks but once, but misfortune has much more patience. 
~Author Unknown

Friday, November 29, 2013

A Beautiful Morning

This is the view I woke to this morning, the sun touching the tops of the mountains across the valley from us.  The view inside was even more beautiful! 

Somewhere in the night, someone (probably Aaron) found that magic switch and flipped it.  He was on one liter of oxygen. 

I know we've been down this path before.  And obviously, he's found his way back each time.  But towards the end, when there's days in a row where it seems that no progress is being made, it can become discouraging.  You begin to wonder, how long will it take?  Where is it going?  Will there be changes we really don't like?  And by the way, I stopped praying for patience a long time ago!  See, I've noticed that when I do, the Lord gives me opportunities for patience, not necessarily the patience itself.  He seems to think that's a muscle I need to exercise a bit more.

I don't know what changed things.  Nobody does.  But like in times past, something finally clicks, his heart vessels and lungs open up, and he does so much better.

We did have a bump this morning where he needed six liters, but only for about 30-45 minutes.  He may have another (coming up now, actually).  But that's okay.  Those can be dismissed as long as they don't go longer than an hour.  And while he may not be quite ready to go home tomorrow, if we don't, it won't be long after that. 

In fact, you can see for yourself how he's doing.  Here he is.  I apologise for the lighting.  He wasn't interested in turning the other direction. 

Right now, this very minute, what he needs is a nap, a good long one.  He's been up since about 8 p.m. last night.  Yep, my little night owl.  Love him so much.
You can only come to the morning through the shadows.
~J.R.R. Tolkien

Thursday, November 28, 2013

Different is Okay, Even Good, Thanksgiving PCMC Style

Boy, this year's Thanksgiving is a far cry from last years, or any that I've known.  But different is okay.  Different can be good.

Last year, I knew it was the last time for a long, long time that we would have all our children under our roof for the holiday season.  I've had friends who thought that it was so sad.  Not me.  I've gotten to know many people over the past three years (and if you stop and think you know some, too) who had "lasts," birthdays, holidays, whatever, and had NO CLUE that it was the last.  Knowing made it easier to keep things in perspective, to focus on the important things, family, fun, spending time together.

Sunday morning, I woke at 2:30 a.m. to the Code alarm on the unit.  I sat there and prayed.  There were only five patients on the floor, and one was in trouble.  I tried and tried to hear the sounds that come creeping back when it resolves successfully.  I tried to rationalize that with it being the middle of the night, and so few patients, that maybe I just missed them.  But that wasn't the case.  I found out Sunday afternoon that it was a friend's baby.  Her beautiful, perfect soul escaped from her tattered body and went Home, leaving a huge gap in her family.  I ache, I ache so badly for them.

So today, we're still at the hospital.  But that can be good, too.  See, we still have Aaron.  And my priorities have been socked right back to where they should be.  Saturday evening, I was impatient, wanting Aaron to hurry up and get better so we could be home, slightly irritated that my schedule was being interrupted.  There was so much to do!

Sunday, I remembered that this is what I need to be doing.  And yeah, it's taking time to get him back to where he'll be safe at home.  But that's okay.  It's the look on his face during a rough IV poke, when he sees me that reminds me I'm choosing the best from the pile of good, better, best.  It's the change in his eyes when I take his hand from "I just can't do this, it's too much" to "There you are, Mom, okay, if you're there, it will be okay." I remember, oh too vividly, standing over his cradle three years ago, sobbing that I just wanted one Christmas, please, just one.  He wasn't doing well.  In fact, less than 24 hours later, they Lifeflighted him from our home.  And we got our Christmas, and two more have gone by since, and yet another approaches.  We are so, so blessed.

Happy Thanksgiving, everyone!
This year, Mary and David are serving the Lord, teaching people about His goodness and sharing the gospel.  William and the rest of the kids will have Thanksgiving breakfast with his mom.  Then they'll come to the hospital for a traditional dinner here.  The good people here provide a traditional dinner for the immediate families of those patients who are here.  Then they'll go home and have a "Charlie Brown Thanksgiving" tonight.  And frankly, if giving thanks is what it's all about, my guess is they will be very thankful for that.  I mean, they're kids.  Toast, pretzel sticks, jelly beans, and ice cream sundaes on regular dishes are more up their alley than china and crystal goblets.  It sounds like a winner of a day all the way around.

George Washington declared Thanksgiving Day as "a day of public thanksgiving and prayer to be observed by acknowledging with grateful hearts the many and signal favours of Almighty God."  He didn't say anything about turkey or sweet potato casserole or pumpkin pie. It was a day for remembering blessings.  And blessed we are.

We can only be said to be alive in those moments when our hearts are conscious of our treasures.  
~Thornton Wilder

Tuesday, November 26, 2013

Stupid Pulmonary Hypertension

Well, we did it!  He made the jump to his home vent and even made it to the floor.  But the floor part was a bit dicey, and still is a tiny bit.

When I woke up this morning, a resident who doesn't know us well (yet) asked if I wanted the floor or home 'cause he was only on 5 liters. That would have been great to go home, except our parameters are three liters or less for 24 hours.  And those are in place precisely because of what's happening now.

By 10:00 a.m. when she came to say we had a bed assigned on the floor, he was awake and needing 12 liters.  Yeah, our home concentrator doesn't even GO to 12 liters.  By 11:30, his assigned time for transfer, he had managed to get back down to 8-9 liters, so we came on up. 

Since then, he's sat between 9 and 12 pretty consistently.  At this very moment, he's using 15 liters, the maximum for the hospital meter.  I'm sticking pretty close to his room and it won't surprise me at all if we end up having to bag him out of a pulmonary hypertensive crisis.  (In other words, he's going to need some significant intervention to open up his lungs and keep the blood flow processing correctly.)  But as long as it works fairly quickly when we do AND it lasts when we put him back on the vent, we should be able to stay on the floor. 

And once he goes to sleep, we should be able to turn his oxygen down and give ourselves more wiggle room.  So here we go.  Pulmonary hypertension has reared his ugly head again, right on schedule.  Yuck.

It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant

Monday, November 25, 2013

Look At This!!

This is the vent that he's been on in the PICU.  The superpower, got a brain, think for itself ventilator.  (Yeah, there might be a bit of vent envy here.)  But look at what it says!  STANDBY, baby!! 

Yep, he's (hopefully??) making the jump back to his vent.  This morning we turned down the settings on this beast to his home settings.  He wasn't quite sure which way to go with that.  And after a little while, one of the docs asked if it was going great.  I told him we still weren't sure.  I figured that one of two things would happen in the next few hours.  Either he would get it together and pull it off, or he would get tired, say, sorry guys, and need to go back up.

And it did take about another five hours before it looked good for long enough that we were all comfortable with things. 

So here we go again.  He's doing what he did this morning when we made changes.  His heart rate is a bit higher, he's really tired.  He's needing a TON of oxygen.  And now we wait to see what he does.  But I kinda think he's going to do it.  If he can stabilize, we'll go to the floor tomorrow. 

Right now, he's resting, sleeping peacfully, which is the best thing for him when he's trying to work hard to adjust.  Besides, he stayed up all night last night, playing hard.  Let me tell you, this super-vent, the ICU vent, doesn't have a clue what to do with a kid who blows raspberries.  It's used to holding still, sedated, intubated patients.  We just laughed.

He still has a ways to go before he can go home.  He's on almost nine liters of oxygen and he has to get to three for at least 24 hours.  But he'll get it.  So sleep tight, baby boy.  Love you.

A good laugh and a long sleep are the best cures in the doctor's book. 
~Irish Proverb

Sunday, November 24, 2013

A Mom

Sometimes I think we just stumble into our roles.  I mean, yeah, you've got nine months  to "prepare" (whatever that means) to become a mom, but then what?  I guess some have a pretty good idea of what "kind of mom" they want to be.  Me, I've pretty much been a fly-by-the-seat-of-my-pants kind of person. 

I mean, the biggest reason my kids didn't go to preschool was that it would add in another schedule we had to keep.  I did worry a little about that, especially since writing their own names was about what they could do when they started kindergarten, as opposed to the kids who were reading already.  But you know what?  I think they've done okay anyway.

I stumbled into the soccer mom thing, totally by accident.  And that ruled my life long before I realized that it did.  I mean, in the beginning, it was a cute activity for the girls, about their only one outside of school.  It was a 45 minute practice once a week for a few weeks and then a 50 minute game once a week.  Easy peasy.  I didn't look far enough into the future to see the three two-hour practices plus two games a week scene, multiplied by multiple kids. 

And then this last fall, I had another "ah-hah" moment.  Someone asked if I was a "heart mom."  Nope, I'm a Trisomy mom, trach mom, vent mom, . . . um, because of his heart.  Uh, yeah, actually, I guess I am.  'Cause while trisomy can (and does!) cause a host of challenges, Aaron's heart is actually probably his biggest single challenge.  So yep, I'm a heart mom.  And knowing some of these other ladies, I can say I'm grateful to be part of them.  They're a pretty incredible bunch. 

But those labels, what do they really mean?  Soccer mom, dance mom, baseball mom.  Trisomy mom, heart mom, vent mom, special needs mom.  I think the most important word in there is the one they all have in common:  MOMYeah, those three little letters, M-O-M. 

Those letters say so much.  They say, "I'll love you forever."  "You are my reason for living."  "I'll always try to do the very best for you, even if, sometimes especially if, you don't like it."  And I think that is what a mom is. 

It's staying up Waaaaaaaaay later than you really wanted to helping with a homework project.  It's getting up and driving to school much earlier than you'd like, in the freezing cold, because they want to take a zero period class.  It's trips to the ER with a broken arm or a towel held on a bloody forehead when you'd rather be making dinner.  It's listening to the frustrations or the excitement of what happened at school.  It's laughing with them and crying with them, and sometimes even yelling, too.

It's learning a new language, holding your baby while they try again and again to get IV access into tiny veins that don't want to cooperate.  It's pushing your fear aside and learning how to keep them breathing, learning what you can handle and when you need back-up, and waiting to fall apart until after the crisis has passed.  It's comforting and reassuring your other kids and family members that, even though this is hard, you know them, and they can do hard things.  Letting them know that it hurts, and it's okay that it hurts, and it's okay that they hurt, but together, you'll get through it all, somehow. 

See, I often have moms say to me, "oh, you're so amazing, I could never do what you do."  But they could, and they would, if they had to.  'Cause that's what a mom does.  That's who she is.  She's a Mom.

Aaron update:  He's improving, just very, very slowly.  Yesterday we took his PEEP from 13 to 12, and today we're trying 12 to 11.  He needs to get to 10 on the hospital vent and be stable there in order to try to get back to his home vent.  But so far, it seems to be fairly steady progress.  He's been asleep all morning, so we'll see how he does when he wakes up.  If he wakes up and does well for a few hours, then we'll drop again.  But as always, it's all in his court.

"Motherhood is near to divinity. It is the highest, holiest service to be assumed by mankind. It places her who honors its holy calling and service next to the angels."
First Presidency of The Church of Jesus Christ of Latter-day Saints.

Saturday, November 23, 2013

Too Much, Too Fast

You know when you get sick and you take medication and think maybe you're not so sick after all?  And then it wears off and you realize, yeah, you really are?  Yeah, I think that's what's happening here.  Except instead of being able to take a decongestant (which would cause really bad things for him) we increased his ventilator support.  And he looked pretty darn good!

So the next step was to decrease the support back to his home settings, since he was soooo stable (and he really was!).  Right off, we started seeing a slightly higher heart rate, and then a little more on top of that.  Then more secretions, higher oxygen needs, and so on.  Can you see where this is going? 

We thought too far ahead.  About 4:00 p.m., they decreased his vent settings (still on the hospital vent) and wrote orders to try his home vent at 8:00 p.m.  Yeah, but at 8:00 p.m. he was on a lot more oxygen, heart rate climing into the 150's (low 110's would have been normal) and he was running a fever again.  Oh, and don't forget all the junk we were pulling out of him.  He was pretty miserable. 

I think it was about 10:00 p.m. that we gave up and increased his PEEP again.  And again at 4:00 a.m., so now it's at 13, which won't mean much to many people, but it's a lot of support.  However, that support is what is keeping his lungs wide open so he can move the oxygen through.  So think of it as your really classy drugs for that lousy cold that otherwise would have you moaning in bed.

And he kinda likes it.  Right now, he's asleep, and his heart rate is 99.  He's not working hard at all.  And earlier this morning, he was blowing raspberries.  Let me tell you, the vent didn't know what to make of that one.  We just laughed.

So now we're watching and waiting.  When the team rounded this morning, the consensus was that we had pushed too hard too soon.  He does have a cold, rhinovirus.  And it's going to have to run it's course, darn it.  But at least we can keep him comfortable while it does. 

I've got thoughts running around in circles inside my brain right now, trying to sort themselves out.  Thoughts on the different roles we take on, the different hats we all wear.  I'm hoping that by tomorrow they make a little more sense.  You've been warned...

“I’m here. I love you. 
I don’t care if you need to stay up crying all night long,
I will stay with you. 
There’s nothing you can ever do to lose my love. 
I will protect you until you die,
and after your death I will still protect you.”
― Elizabeth Gilbert

Friday, November 22, 2013

Still Sick, But Doing Better

Cute art project that Child Life did for him.
The turkey body is his footprint. Love my
kiddo's chubby foot!
It's funny how time is so fluid.  It crawls at a snail's pace and then races along.  So please forgive me if I'm not too exact on how things happened yesterday.  It was a bit crazy.

All afternoon, he kept creeping up in his oxygen needs.  I mentioned that the Trach Ninja had been in and not impressed.  I think that was about 3:30 or so.  About 4:00, he looked worse still.  Just before 5:00, he dropped again.  I was standing bedside and his nurse asked if I wanted to bag him.  No, she wasn't asking if I wanted to bag him versus her bagging him, but if I thought he needed it.  But guess what, I'm pretty darn good at bagging him.  So I asked her to hand it to me and plug it into the oxygen. 

And it started.  She also called respiratory in, telling them what we were doing.  So we bagged, and tried the vent, and bagged again.  Also involved were phone calls to the PICU, and yeah, the attending had been "attending" a whole lot more the whole afternoon.  In fact, he stepped away because he had a care conference for one of Aaron's little friends, but was in and out of that to come check on us. (Funny part was, even though nothing was said because of HIPPA, her mom and I each knew who the "other" patient was that he was so involved with.) 

PICU wanted to increase some vent settings to see if it helped.  Nope, not happening.  All in all, he was probably being bagged for close to an hour or more, and yep, he landed in the PICU.  We got down here right about 6:00 p.m.  They put him on the hospital vent which lets us give him much more oxygen and he settled right down. 

He's been peaceful ever since.  Well, except when we suction out his nose.  Don't get that one.  Doesn't every three year old love to have their boogers sucked out? 

The PICU has increased some of his ventilator settings to open his lungs and let us use a little less oxygen.  If you look back to his September fun, he really, really struggled the first few days.  Like needing 100% oxygen and having a hard time keeping 80% in his blood.  (We usually sit in the mid-high 90% without any extra oxygen.)  I came back from dinner last night and he was only using 60% to stay above 90%. 

Right now, he's down much, much lower.  I think the next step is to reduce his ventilator settings back to his home settings.  His labs have all come back now, and the only thing that showed up was rhinovirus.  His white blood count, which measures how hard the body is fighting against illness, was very low.  So we're not worried about a bacterial component (and hoping one doesn't show up later). 

It's just support that he needs.  While his vital signs are so much better (and yep, "vital" means exactly that, absolutely necessary, essential to life) he's still pretty sick.  His fever seems to be gone.  He still been a bit warm a few times, up to 38.3 (100.9) a couple of times today, but it's resolved on it's own without medication.  He's also still really, really goopy, with tons of stuff coming out of his nose and his trach.  And he's not playing or smiling a whole lot yet either.  Yep, sick.

However, it's almost 1:00 p.m. and they still haven't rounded on him.  I like being low priority in the PICU.  He's been high priority before, he's been very unstable.  I've seen three attendings at his bedside at 2:00 a.m. before.  Yeah, I like where we're sitting now much better. 

“I took a deep breath and listened to the old brag of my heart.
 I am, I am, I am.”
― Sylvia Plath

Thursday, November 21, 2013

Where We Are

Aaron was doing great, really great, right up until Wednesday morning.  As he left for school, he sneezed out a huge green booger (TMI?).  His nurse said that all day they were mopping up yellow and green junk from his nose, but nothing from the trach.  Wednesday evening, I started pulling it out of his trach.

By Wednesday night, he was running a fever, and much junkier.  He was still okay on his oxygen, but I started albuterol anyway, hoping to head off things.  Didn’t happen.  He did Okay through most of the night, but by 4:45 a.m. he was struggling quite a bit. 

We had a new nurse last night and I guess he figured he had to break her in.  He was in the mid to high 70’s with his oxygen and really retracting and junky and frankly, a mess.  She had been suctioning several times an hour most of the night.

So we gave Tylenol, got the bag mask out, and started bagging him.  Once he came up a bit, we switched back to give him albuterol through the ventilator.  When that was finished, we went back to bagging for several minutes.  Since he was able to be somewhat stable, it was time to watch and see if things improved with the albuterol.  Um, not really.  We watched for about 45 minutes to an hour, plenty of time for things to kick in.  He wasn't budging on his nine liters of O2.  So it was time to throw in the towel and call for backup.

But hey, we let Lone Peak Fire sleep through the night!   And I almost did.  When we got here, he popped another fever, 38.something (I can’t remember) even though he’d had Tylenol only three hours earlier.  

We’re pulling all sorts of nasty, thick, sticky junk out of his lungs.  His x-ray looked good and they’ve pulled a bunch of labs. The only thing positive at this point is his viral panel.  Good ol’ Rhino, his nemesis. 
Right now, he’s kind of on a bubble.  If it pops (and it’s looking a  wee bit fragile) he’ll go downstairs to PICU.  His fever is back, up to 39.7, even with Tylenol.  We’ve given Motrin again, rechecked the gasses in his blood to makes sure he’s oxygenating well enough.  They’ll repeat it in a couple hours and we’ll go from there.  But I’m afraid it’s a bit telling that the Trach Ninja was in and was not happy with how things were going. 

So for now, I’m not getting too comfy and settled in the room.  It would be great if we can stay here and not need the extra support downstairs.  And so much for getting the ramp built this weekend.  I do love power tools.

For now, please say some extra prayers for our bug.  He’s hanging out on ten liters of oxygen and satting in the high 80’s.  This bug is kicking his tail.

To array a man's will against his sickness is the supreme art of medicine.
 ~Henry Ward Beecher

Sunday, November 17, 2013

Special Needs Families

I'm not sure where this is going, so either bear with me, or click  away.  But once again, I've got a jumble of thoughts floating round and round.  Perhaps I ought to find time to write more than once a week.  Maybe then I wouldn't get so confused.  It's been a busy week, a good one, but busy. 

On Monday, we got to go to a wonderful Veteran's Day program at the grade school.  As part of it, they had all the veterans present stand and introduce themselves, and then they sang the fight songs for the various branches.  That, along with the pledge, the National Anthem, and some other presentations guaranteed that I was teary-eyed through most of it.  As we left, I overheard an older vet say to the woman with him, "With kids like that, I don't worry about the future of this nation."  Yeah, it was that good.  If you want a taste of it, here's a slideshow that they sang "Thank you, Military" during.  Even downloading it, I was in tears.  Blame my own military upbringing.  Air Force brat, all the way.

Tuesday was Joseph's surgery.  He's been a real trooper, but still suffering quite a bit. We had to go back in last night to the ER because he had some bleeding (the tonsils are located right by four different arteries).  Fortunately, while we could see the source, it had stopped by the time we got there, so they just watched him for a while.

Wednesday was Aaron's "all-you-can-eat" doctor's appointment where we see Special Needs, Social Work, ENT, pulmonology and respiratory.  Everyone was sooo impressed with how good he looked.  Now the goal is to not go back there until our next one in about six months or so.  Gotta love goals, right?

But here's what's been on my mind, the need for support, for contact with other families.  It's something I've been thinking of since a leader of one of my support groups asked if the weekly lunches they hold for families who are inpatient were helpful.  The responses?  Most definitely a resounding YES!

See, here's the thing, when you become pregnant, whether it was "planned" or a "surprise," you have certain expectations.  Birth about nine months later, walking somewhere between 9-14 months, babbling, kindergarten, maybe dance or soccer practice, high school, driver's license, prom, graduation, maybe college, and so on.

NOBODY plans of NICU, PICU, becoming so familiar with life-saving measures that you can almost do them in your sleep.  Nobody expects to plan their child's funeral, or to have to figure out how to teach a child how to roll over. 

My sister has an extensive background in special ed and special needs.  In my anguish and fear (and yeah, fear was a very big part of it) I once told her that this baby I was carrying was supposed to be hers, not mine, because I didn't know ANYTHING about special needs.  Bless her heart, I don't know if it was her natural compassion or her psych training kicking in, but she just listened.  She probably should have reached through the phone and slapped me.  She had her own challenges that I well knew.

So when you do get that diagnosis, even if it's an "unknown, just something is wrong" diagnosis, it's paralyzing, isolating, lonely.  All of a sudden, it seems that everywhere you go, everywhere you look, there are happy pregnant women, cute active toddlers, poised accomplished teens, and while you love your child with every fiber in your body, that's just not you anymore.

Instead, you come to be on a first-name basis with your local paramedics, and they don't even consult a map when they hear your address.  You learn to live with tubes and wires and alarms, and welcome into your home and your family strangers who will keep your child alive while you catch a few hours of sleep.  You learn a whole new language, one that you must know in order to be able to communicate effectively and exactly with the medical world.  Because knowing it is crucial for your child's life.

Last Tuesday, during Joseph's surgery, I slipped into the lunch that was being held.  We laughed and we commiserated.  There was a wide variety of challenges being faced there, but this particular group caters to families whose children have life-threatening illness, and it bonds us. 

During lunch, a strident alarm blared out.  All conversation ceased as we looked at the speaker.  Then the words, "Code Red" followed by some place came out, and we all breathed again.  Some didn't even know what a "Code Red" was (it's a fire).  We went back to laughing and talking.  Because it was just a fire in the hospital, no biggie, right?  But it wasn't a Code Blue.  Because we knew, everyone of us knew, what a Code Blue was.  And some have had it called on their children.  It was as if breath and hearts stopped in our little room while we waited those few seconds to hear.  And once again, we were all one.  One in our hopes and our fears. 

As special needs parents, we do laugh and talk.  We have to.  And we joke about alarms and hospital visits and long stays.  We tease about who wants the extra attention from the PICU staff and who is content to stay on the floor.  Sometimes, in our Trisomy family, we joke about forming a physical community.  We would have roads like Hug Boulevard and Angel Way and Warrior Path.    Because we need these connections.  We need to feel a part of things.  We need to know we're not alone, and we're not.  And that is what's so special about a special needs family.  We are not alone, and we will reach out in love and faith and prayer, and let each other know that they are not alone.  We have each other. 

"Stellar spirits are often housed in imperfect bodies. The gift of such a body can actually strengthen a family as parents and siblings willingly build their lives around that child born with special needs."
Russell M. Nelson, October 2013

Sunday, November 10, 2013


Friday, a typhoon hit the Philippines.  I have my own memories of being in one when we lived there.  We weren't in danger, but let's just say as a four year old and afraid of the dark, I was plenty scared.

Today though, there are moms and dads who put my fear in a different light.  There are still several missionaries unaccounted for, and I can not imagine the aching feeling of not knowing where my son or daughter was, or how they were doing.  I can not imagine the exhaustion that comes from that kind of worry.  For me, it's the unknown, the lack of ability to do anything to help that's the worst.  The very, very worst time for me in Aaron's journey was the time when he was in the NICU and I couldn't be there all the time with him.  That was worse than heart failure, pneumonia, and the major issues we've seen this summer.  Not knowing, not helping, not being there.  And that's where these moms and dads who have sent their children out to help others are currently sitting.  Please, please pray for them, for their children, and for all the others who are suffering over there.

Aaron is doing well here.  He's back to his old tricks:  staying up until 4 a.m. (last night), sleeping through school most of the week.  On Friday, he was making some really weird breathing sounds.  And they were loud enough that I could hear them in the next room.  Generally, that's not a good thing.  I went to investigate and found him blowing raspberries!  Yep, he was thinking it was pretty funny.  Last night, he was laughing around his trach.  We haven't had this for so, so long.

I remember a conversation with Dr. G. when we were getting ready to bring him home from the NICU.   I was still trying to get a feel for how long we might possibly have, and how to tell when it was drawing to an end.  He told me that he had seen many do well for a while, six, 12, 18 months, and then their bodies would just be fighting too hard.  I asked him if I would see it coming.  He assured me that yes, I would know, I would see it happening.  It was more rare for it to be sudden in a case like that.

And that's what I've replayed over and over as our hospitalizations have gotten more frequent, longer, and with fewer options.  That's the conversation I heard again in my mind when cardiology started talking about needing to have a new, higher oxygen flow baseline for discharge from the hospital.  That is why I have been so thrilled with the idea that his asthma is contributing more than we thought it was.

He still struggles to lie flat for long periods of time, but we all breathe better when our heads are up a bit.  And we've used his albuterol a couple of times since discharge.  But his demeanor, his energy level, and even (or especially) the noises he makes now that he's got more energy all point to very good times ahead.

One last note, Joseph's tonsillectomy has been moved to this Tuesday.  He's pretty nervous about dealing with the pain afterwards.  Can you please keep him in your prayers as well?
You are not alone on this journey. Your Heavenly Father knows you. Even when no one else hears you, He hears you.
Dieter F. Uchtdorf


November 4th - I'm grateful for Michael's enthusiasm.  He is so excited about just about everything.  He brings a freshness, a newness to simple joys.

A quote a day from 2013 conferences
with space to jot a thought or two.
November 5th - I'm grateful for helpers in the insurance world that will work hard to figure out how to get Aaron the care he needs.  The hospital dentist isn't listed as a provider for our insurance, but the representative took my name and number, GAVE me HER name and number and promised to figure out something.  Then called back bright and early the next day to say it was all fixed.

November 6th - I'm grateful for home computers and the internet that let
me put together meaningful, lasting gifts for my children.

November 7th - I'm grateful for Matthew and Jonathan, and for their quirky sense of humor.  These boys make me laugh.  It's so fun to have "almost adults" around.

November 8th - I'm grateful for my kids' overall good health.  When I went to fill out pre-proceedure paperwork for Joseph's surgery, I was dreading it.  Aaron's takes a good 45-60 minutes.  Joseph's was simple, less than three minutes, start to finish.

November 9th - I'm grateful for our special needs community.  In happiness or sorrow, we "get" it.  And it was so much fun to take "hero" pictures yesterday for a fundraising calendar.  Michael was my hero yesterday as he worked hard to help Aaron in his pictures.  Both dressed up, and Michael played a star role as a supporting (literally!) actor.

November 10th - I'm grateful for the gospel, for the peace and understanding it brings.  There are simply not words to express.  I would not be me, I could not do the things I do, without it.

Sunday, November 3, 2013


I am wearing a pair of shoes. Each day I wear them. Each day I wish they'd feel more comfortable and some days, they do. Some days my shoes hurt so badly that I do not think I can take another step. I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes. To learn how painful my shoes can be might make others uncomfortable. To truly understand these shoes one must walk in them but once you put them on, you can never, ever take them off.

I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some people ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No parent set out to wear these shoes. Yet, because of these shoes I am a stronger person. These shoes have given me the strength to face anything. They have made me who I am.

I am a parent who has children with special needs and I will forever walk in these shoes.


We're home, we're settling in.  I am Wiped. Out.  I don't think I've realized how one edge, how on alert I have been these past many months. 

My dad used to fly rescue aircraft in Alaska.  There was always a team "on alert."  Always.  24/7/365.  'Cause somehow pilots and planes didn't get the message that emergencies needed to be scheduled, and during business hours at that.  Now some people could go their whole assignment (measured in years) without ever being called out while on alert.  My dad though, he seemed to have the magic touch.  It seemed like every time he was on, they called him.  He had to  be ready to go in a moment's notice.  We had to live within a certain time distance from the base and he had so many minutes from the time of his page to be in the air.  (I'm sure that to this day, 30 years later, he and Mom could tell you exactly what that was.) 

Yeah, that's where I've been living.  Except, I don't rotate off, and it's my kid, my flesh and blood.  Not some stranger whose life has crossed mine briefly.  I don't know what it's like to come back from the war zone.  But I imagine I'm not too far off.  And yeah, the PTSD is definitely there.  His pulse/ox is our warning alarm.  And it has alarmed and alarmed and alarmed over the past six months.  And they haven't been false ones.  For the past few days though, it's alarming when the monkey disconnects it.  Silly boy.  Maybe he doesn't want me to get too comfy.  That's okay, I'll take it.

Another measure, we used to use a pediatric regulator on his oxygen tank all the time.  I did carry the regular one, just in case, but it sat, mostly forgotten, in the bottom of his "go bag."  It's telling that the pediatric regulator has been sitting on the table long enough that it's dusty.  See, the difference is, I can fine-tune his oxygen much better with the pediatric one, but it only goes to four liters.  It used to be that gave us plenty of wiggle room.  Not since April.  The regular one goes to eight liters, and I've sometimes needed that. 

But now, the last few days, when he does dip, we're turning him UP to 1.5 or two liters.  Yep, I think I see that royal blue pediatric one making a come back. 

So I'm regrouping, collecting myself, breathing more deeply and calmly myself.  And my shoes, they're feeling better and better each day.

November is Thanksgiving time.  Here's to focusing more on gratitude:

November 1st:  Easy!  I'm grateful we have answers that can be worked with!

November 2nd: I'm grateful to be home, to not have a whole lot on the schedule and to be able to relax.

November 3rd: I'm grateful for my mom.  Today's her birthday, so send her lots of Happy Birthday wishes.  She's amazing, and she even survived six great, but sometimes insanely intense kids, and she still loves us.  (I'm really lucky, both my parents are born in November, so I get to be thankful for each on their special day.  You don't get much better than that.)

When you have worn out your shoes, the strength of the shoe leather has passed into the fiber of your body.   
~Ralph Waldo Emerson