I Think He's Sung This Song Before

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

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

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

President Uchtdorf said:

When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace. 

We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?

There is a common phrase about how life isn't about waiting for the rain to pass, but learning to dance in the rain.  I think Aaron's life is about dancing in the rain, and this kid loves to dance.  And I'll take that goofy, funny little man any day and dance with him.  He's taught me how to dance with him and his challenges.

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

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

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

Holding Steady

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

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

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

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

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







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

 The race is not always to the swift, 

but to those who keep on running.

 ~Author unknown

I Believe In Christ

There is something very poignant, very appropriate and touching about watching the Mormon Tabernacle Choir sing  "I Believe in Christ" from an PICU room with your child, while all around you are other very sick, compromised children.

I believe in Christ; he stands supreme!

From him I'll gain my fondest dream;

And while I strive through grief and pain,

His voice is heard: "Ye shall obtain."

I believe in Christ; so come what may,

With him I'll stand in that great day

When on this earth he comes again

To rule among the sons of men.

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

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

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

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

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

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

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

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

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

Sisterhood

We saw a few of those impish grins today.
Love them.

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

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

That pad under his IV makes a great chew
toy, at least from his point of view.

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

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

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

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

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

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

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

Sick, So Sick, Again

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

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

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

This morning at home.  You can see the
"tools of the trade" in his bed.
There's his albuterol with his spacer, his
peach colored percussor that we use to
do CPT, and his bag mask, when he
decides that he wants extra help with
breathing.  And yeah, he's exhausted.

But as the day wore on, he started having stuff in his trach, and it was colored, yucky green/yellow colors.  It got thicker, he got sadder.  But he was still doing okay.  By 7 p.m., I decided with the direction that he was heading, I was going to try to get in a pre-emptive strike and started giving him albuterol.  That did help open him up more and it also helped release a lot of the junk he had so we could pull it out.

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

His chest x-ray from this morning.  Not great,
but not too bad either.  Frankly, it looks like him:
cloudy with a chance of junk.

Just before 7 a.m. he had a pretty bad desat.  Like, down into the 60% oxygen bad desat.  He wasn't moving even with a lot more oxygen, or actually he was, but it was lower, not higher.  That's how he ended up in the 60's.  So I bagged him.  It took several minutes to pull him back up into the 90's.  I kept going a little longer to keep him there, and then put him back on the vent.

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

This morning in the emergency
department.  He was a bit happier
when he had more support.

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

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

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

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

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

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

The cleaning and scrubbing can wait till tomorrow

But children grow up as I've learned to my sorrow.

So quiet down cobwebs; Dust go to sleep!

I'm rocking my baby and babies don't keep.

-Ruth Hulburt Hamilton

Music to My Ears (and My Heart)

Check this kid out!  This is what I've been listening to for about the past hour!  Can I tell you how happy this makes me??

We lost so much ground last April (yeah, almost a full year ago) when Aaron got sick.  He had been doing so well trialing off his ventilator.  But after that bout in the hospital where his asthma flared up, we just kept struggling.  And while he'd been spending hours every day off the vent before, he wasn't even stable ON the ventilator anymore.

If I'd had time to contemplate it, it would have broke my heart.  But instead, I was working so hard on keeping him alive, that I was just grateful that he was still here, and hoped he'd stick around.  It did make me so sad one day when Andrew came up and asked me to put the speaking valve on so he could hear Aaron's voice.  I almost cried as I told him that wasn't possible.  We couldn't even take him off the vent, let alone put that on.

A speaking valve works because there is a one-way membrane. A person breathes in through it, but then it seals and they have to push the air up and out through the mouth and nose, passing the vocal cords on the way.  You know how they tell you that if someone is making noise, they're not choking all the way yet? It's because they're moving air past their vocal cords and out through the mouth.

But given how well he's doing on his new vent settings, you know, the ones where it's supporting the air pressure but making him do all the work of breathing, I thought maybe, just maybe, he might tolerate being off for a little bit.

So on Wednesday, we tried for 30 minutes.  At the end, his heart rate was up a tiny bit, his sats were great, but his breathing rate was up quite a bit.  Time to call it.

Thursday, we tried again.  This time he made it a full hour!  And all his vitals stayed within normal limits.  The last 15 minutes or so, he was working harder to breathe, but his heart rate and breathing rate were still within normal limits.

Today, I thought I'd do something really crazy, and see if perhaps he might let me put his speaking valve on him.  When we very first started using it just over a year ago, he really struggled with it.  Remember, he's been breathing out through his neck for almost 3 1/2 years now.  But he kind of pulled a few funny faces, and then discovered that he could make noise!!  It's now been almost an hour and a half.  He's having a blast in there!

And those vital signs?  They've rarely looked better, and on only one liter of oxygen, too.  Yeah, music to my heart.

He who sings scares away his woes.  ~Cervantes

Murphy's Job: To Keep You Humble

Well, we have a power outage, so since I can’t use the internet, it seems like a good time to write down what’s been happening. 

Last week, Aaron managed to catch the tummy bug the rest of us had.  He had a little more trouble with his feedings, but not too bad.  His struggle was on the other end.  Or maybe I should say, MY struggle.  Yeah, we were changing bedding at almost every diaper change.  And those were pretty darn often. 

As an example of how out of it I was, it took me two full days before I got smart enough to just put a Chux pad underneath him, on top of his sheets.   (Those are those great disposable absorbent pads hospitals use.)  But since Aaron has lots of extra calories to spare, as long as he wasn’t dehydrated, everything was good.  So he slept a lot (and pooped a lot!) and everything was good.  And come Sunday morning, he was just fine!  So that’s all good.

Sunday evening though, that was a whole different kettle of fish.  You know how you get nice and comfortable?  Everything just fine and you’ve got this stuff down?  And then good ol’ Murphy comes along and smacks you just to keep you humble!   Yeah, that pretty much sums it up.

I (sorta) change his trach every two weeks.  That means occasionally I change it weekly.  Sometimes it gets pushed to every three weeks.  I think we were pushing almost four this time.  So I had time Sunday evening and figured I’d just get it done.  I mean, after all, I’ve done it probably close to 200 times now.  And last time?  Well, he laughed at us as we did it.

This time, he was asleep and just sort of waking up.  Sometimes that’s good.  He’s nice and relaxed.  This wasn’t one of those times, I guess.  Anyway, got it changed out, pretty routine except he wasn’t real happy about it.  His nurse had just gotten here, and she noticed he was pretty red right below his trach site, on his upper chest, and asked if he had a rash.  In running my hand over it to see if it was warm, I also noticed a lump, about the size of a blueberry, just below and off to the right side of where his stoma is.  Um, what??

I grabbed the stethoscope and tried to listen.  Good breath sounds on the right, not so much on the left.  In fact, almost NO breath sounds on the left.  Quickly undid his ties, removed the trach and replaced it.  This time it was MUCH harder to get the trach in.  Poor baby.  Still have the lump, but now I’ve got equal breath sounds on both sides.  And by the way, what’s he thinking of all this?  Well, let’s just say he’s much less than impressed.  So his sats are dropping, too. 

We turn him up and Daddy comes in to hold him and help him recover.  After all is said and done, he does calm down, goes back to sleep and is at his baseline for the rest of the night.  And I’m left trying to figure out what the heck has happened. 

Michael getting ready to go back to the OR.
He's really doing pretty good today, only
24 hours post-op.

I called our trach ninja the next morning and she was stumped, too.  She suggested we needed to run it past Dr. M.  Bonus, he was scheduled to take out Michael’s tonsils in the morning!  

So yesterday, I talked to him.  He thinks the lump may be a small cyst and he’ll take a look at it when we go in for an ear check in two weeks.  And he suggested that what happened with the lack of breath sounds is that in changing the trach, I may have dislodged a plug that then lodged in the airway.  Removing and replacing it again, probably loosened it again.  We did get a lot of “junk” out after it was all over. 

Anyway, the long and short of it is, he had a rough time.  And it seems the only time trach changes are hard is when I’m feeling pretty confident that it’s going to be easy peasy.  SOMEDAY, maybe I’ll stop thinking that way and he won’t have to suffer.  Maybe. 

But now, he’s doing great again.  We’re even thinking of starting to trial off the vent a little bit.  Actually did for about 30 minutes today.   Who knows? Maybe someday he won’t need that crazy, obnoxious, wonderful, life-saving technology.    But either way, I’m still loving his snuggles, his gentle spirit, his wonderful ways. 

Oh, and the power?  Rocky Mountain said it would be out for about five hours.  I think they overestimated by a bit.  It came on just after I started writing this.

A bend in the road is not the end of the road... 

unless you fail to make the turn.  

~Helen Keller