Seeing Clearly

Soooo, we got glasses this week.

I worried that we would have a similar battle with them that we fight with the hearing aid, but figured, maybe not.

Um, nope, not at all.  Oh, he fusses with them a little, pulls them down, or peers over the top, and then laughs when we adjust them.  But mostly, he just wears them and grins.

And even more, it's what we're NOT seeing.

All his life, he's rocked his head back and forth, especially when bored or tired, and especially when upright in his wheelchair.  It's actually a bit irritating to hear the bonk, bonk of his headrest as the post hits against his oxygen tank.  He also hit his head with his fist.  We figured they were just stimming (stimulation) behaviors, you know, just things he did over and over, and were grateful that they weren't more destructive, like gouging out his teeth or other things. But still....

We picked up his glasses on Wednesday morning, and we haven't seen ANY OF THIS!!!

No head rocking, no head banging.

I found a picture that showed the difference between an uncorrected and corrected astigmatism, and yeah, if that's what he was dealing with, I'm so sorry!





But we seem to have fixed it.  He's also sleeping less.  Hm, seeing better, probably not having headaches, less tired...  Yeah, I think it could all add up.

Plus his brothers have nicknamed him "The Professor" because they say he looks so smart.

In other news, we continue to battle the after affects of his cold, but it doesn't seem to slow us down much.  There's just too much to do, too much to see.  Today I even managed to put the bag on and help him breathe during church.  Not sure more than one or two people even noticed. Our new slogan:  Have bag, will travel.  What do you think?

We had a second soccer tournament this week and the annual local SOFT picnic.  The tournament went well and it was so fun to see our friends!  We even met a little girl from Aruba with full T18 who is battling to be given permission by their government insurance to have her heart fixed. 

Yep, it's a reality.  It's not just the kids in the news.  Many children and families fight for care.  It's not even a big surgery, at least as far as cardiac surgeries go.  But that darn "incompatible with life" label gets in the way.  But those eyes, those oh-so-soft curls, the cute noises she makes.   Trust me, she's a treasure.  All our kids are. 






And it's so refreshing to get together with friends who also juggle special needs along side of typical kids and just life! 

Here he is after swiping his brother's (mostly empty) soda can.  He's totally a tease!  Pretending to do what he watched his brother do but only so far.  He'd put it near his mouth, but in?  Nope, no way.  Which is probably good as he wouldn't have known what to do if it had landed in his mouth. 








Yeah, our kids are different from other kids, but they're still kids!  And if you saw them pulling at each other and interacting with everyone, you'd realize that, underneath everything, they're more like other children than not. 

 Those who see the world through the lens of love are true visionaries.

Bryant McGill

No Heart Cath (yet)

At big brother's soccer tournament.

So today was supposed to be that day, the day Aaron went in, they put him under and threaded a small tube up through a blood vessel near his groin into his heart.  It was supposed to be today.  The day I've been worried about for the past month or so.

Except it's not. 

You know those back-to-school colds?  The ones that cause the sniffles and sneezes and coughs just a few days after everyone scurries out the door? 

Sometimes breathing is just HARD!

Well, this kid decided to get his out of the way early.  At least I hope that's what he decided and we don't have another waiting in the wings.

And for Aaron, a cold messes things up.  It messes up his heart, his lungs, his ability to tolerate anesthesia.  If you've ever had surgery, you remember the big form someone goes over with you regarding the dangers of surgery, the risk (teeny) of death, of having something else go wrong, or prolonged issues.  But in reality, it's a non-issue, we sign, we go on, and it's barely a blip on our radar.

Onsies made from Grandpa Bear's old t-shirts.

But with Aaron, in addition to that talk, we also get the "and of course you know, that for Aaron, those risks are exponentially higher."  In our hospital, they have a minimum time you have to be in recovery before going home.  It's something like 90 minutes or so.  When he was younger, we'd hit a timer as he rolled into recovery and were on our way out the door when it went off. 

But lately, it's gotten harder. 

In April, we worked for several hours to get him stable enough to go home after his trach revision.  I thought we were there, we left.  And we came back a couple days later.  Didn't work.  That lovely combination of anesthesia, asthma and pulmonary hypertension. 

Now throw in a cold, junky lungs, runny nose, and well, nope.  We weren't doing it.  Not yet.  Now the goal will be October 19th, during fall break, 'cause we just know how to party.

This last week has been a little intense.  But it's been intense here, at home.  We moved to doing breathing treatments and vest therapy every 4-6 hours.  His pediatrician put him on an antibiotic that's shown some promise in reducing asthma attacks due to rhinovirus.  We've bagged him, repeatedly, sometimes over the course of several hours.  I packed the hospital bag, and when I pulled things I needed out (toothbrush anyone?) I put it right back.  But we stayed HOME!!! 

Seriously, major victory!!! 

I channeled some of my nervous energy into making a few more onesies out of t-shirts my mother-in-law gave him.  I made several days worth of his food to freeze (you know, in case we didn't stay home). 

And then as he started to turn the corner a bit, we ventured out.  He went to all three days of a soccer tournament, although the first day had me bagging him at the field.  Got some strange, worried looks on that one.  Me, I was more worried about the big, dark clouds overhead that ended up clearing the games for an hour. 

Waving at his buddies, the paramedics.

He went to a couple parades, complete with noise cancelling headphones.  He waved at the ambulance, and I told him not to be getting any ideas. 


Yesterday we went to the zoo where he saw elephants, fish, and a giant (fake!) spider.  Yep, I think we got this. 

Tomorrow we've got another soccer tournament, a picnic, and we start the rounds of back-to-school visits.  He starts next week.  It's all good.  It's very good.  And we'll tackle the heart cath and the anxiety that goes with it later.  Enough later that I'm not even going to think about it for a while. 

Life consists not in holding good cards but in playing those you hold well.

Josh Billings

Not Quite "Easy-Peasy"

So tired.

Soooo, this whole "quick hospital trip" didn't go quite as planned.

Oh, it was still pretty quick.  Some were hoping for 24 hours but everyone planned for 48, just in case, and it was only about 54.  Not too shabby, especially when you consider that everything in a hospital runs on something called "hospital time."  For the uninitiated, it has to do with the ebb and flow of multiple patients being cared for by a variety of staff, all of whom have to line up everything at just the right time, in addition to the emergencies and unknowns that go along with life.  Yeah, "hospital time."

Anyway, we got there on Tuesday morning and Aaron was in fine form.  He was hooked up to the vent on our original settings and we waited for pulmonology to get involved.  About 1 pm, we had our first orders and made the first changes.  These involved similar settings to what we had after his sleep study, but with a little more support.

Playing in his "tent" bed.  (Meant to keep monkeys from
falling out of bed.)

Okay, that helped a little bit.  He was doing well, but still not quite as good as we hoped.  So we started talking about increasing support a little bit more.  Again, it took a while to get orders.  Wednesday morning, we had them and got started.  Now, the thing is, for most people, that would probably work pretty well.  Aaron has an artery that presses down on his right bronchus, the main stem that goes into his right lung.  Because of that compression, the collapse, it's harder to get good air exchange.  The thought was if we increased the PEEP, the pressure that is always in the lungs, it would hold it open better.  And that's probably true.  BUT increasing the pressure also puts more pressure on the heart because it makes the lungs a little bigger, and makes the blood flow a little more challenging.  So which way was it going to go?

A CT scanner that looks like a pirate ship!

Yeah, well, my kid.....      It wasn't good.  Now, it wasn't bad as in lots of people in his room, significant damage, scary times.  It was bad as in we were on high vent support AND high oxygen, like 15 liters just to keep things at 85%.

All these people hooking me up are kinda silly.

And since it wasn't scary bad, once again, we had to get all the powers that be to weigh in on things before they were changed.  Both cardiology and pulmonology can be difficult departments to reach.  Now try getting both of them at the same time.  Plus, we were in the PICU and while the numbers weren't high, there were a few very, very critical needy patients, kids who were much worse off than we were.

It took all day.  By "all day" I mean we didn't get things changed back until well after dark.  With the failure, both cardio and pulmo decided they wanted a closer look at his lungs, which translated into a chest CT with angio on Thursday morning.

Into the CT tube.

Thursday morning morphed into Thursday afternoon (see the note about hospital time above), and then he had some weird heart tracings after.  There were lots of good, innocent reasons for that, but a couple of very rare and very, very bad reasons, so even with a (sorta) reassuring CT, we needed to stick around for an EKG.  When that was all good, we finally busted out about 4:15, just in time to make it down to an appointment with the ENT before he closed.

Why can't I play with all these fun cords?

Here's the thing, here's the "work," the processing I'm still trying to assimilate in my brain.  Yes, we've got better vent settings.  Yes, the CT didn't have anything terribly awful and new in it.  (The EKG was actually great.)  But that's it.  The vent settings are better, but they're still pretty high.  The airway into his right lung is being squished (for lack of a better word) which makes it harder to breathe, harder to oxygenate.  It pushes his lung disease that much further, which in turn, hurts his heart.  The words in the report are jarring:  "scattered groundglass opacities in all five lobes" "dynamic narrowing of the right upper lobe which decreases by 50% during the respiratory cycle," "concentric thickening of the right ventricular myocardium."  There, in black and white medical terms, my baby's struggling.

At the ENT, after discharge.

We knew this.  Frankly, except the extent of the compression, we knew all of it.  It's just that somehow lungs that are "cloudy with a chance of junk" sounds less lethal than "groundglass opacities (and yes, the reports make it one word, not two) and saying he's got a big heart doesn't give quite the same impression as "the right side of his heart has been working hard for a long time and is getting thicker."

So that's where I am.  Reality has reared it's ugly head again and made me take notice.  We medical mamas are strange, fierce creatures, but we often like to hide from the future.  We feel like if we can just know enough, work hard enough, fight long enough, love hard enough, endure forever, that what we fear will stay away.  The bottom line is, it won't.  There will come a day, and it doesn't matter how far away that day is, it's too close, when we have to step back, stop, and say goodby.  And there are simply no words for that kind of pain.

Happy to be home.

However, that day, for us, is not here yet.  I've been reminded in a very real, tangible way, that it is coming, but It. Is. Not. Here. Yet.  And I refuse to give into the fear, the pain, until it is.  This morning Aaron got his new hearing aid.  Next week, we hope to pick up his glasses.  We're training a new nurse to be one of his school nurses.  I'm filling out paperwork for a communication device that will be much less unwieldy than his current book. He's going to a parade tomorrow and another one in two more weeks.  We're going to laugh and play and sing and make memories.

Aaron is happy.  He is goofy and silly and sometimes mischievous.  That kid knows what's going on around him, and I refuse to subject him to mourning things that can't be changed, but don't need to be focused on right now.  We will move forward.  We must.

“All the art of living lies in a fine mingling of letting go and holding on.” 

– Havelock Ellis

Planned PICU Admit

Yeah, I know, it sounds weird.  But so is life. 

They're bringing Aaron into the hospital on Tuesday morning to work on his vent settings.  Since he's a little turkey who really, really likes his oxygen, we're going to the PICU.  I know, you're saying, "but it's so much fun to see different things and have multiple rooms," right?  Yeah, well, we try to not stir up too much trouble on the floor, and 12 liters of the good stuff makes them nervous.  In the PICU on the other hand, well, no one even blinks.  They just take care of business. 

So we're checking into the hospital at 10 on Tuesday, perfectly well and not struggling, and being admitted into the PICU.  Vent settings will be changed and he'll be monitored.  Ideally, it will take about 48 hours to get everything put together and make sure they'll work.  Ideally, lots of things would work.  The nurse told me it's kinda a child-driven thing.  I told her my whole world is child-driven, sometimes it's a different child, but for the last almost 26 years, my life has been child-driven.  So I should be used to it?? 

Anyway, I think I'm channeling some PTSD in advance.  This one really should be a no biggie.  Check in, change things, if they don't work, change them some more.  When everything looks good, head home.  But the reason we're getting it done is he has a heart catheterization coming up August 16th.  That one has me nervous, really nervous.

For a heart cath, they'll put him under and then thread a small tube up through his femoral artery, into his heart.  There pressures will be measured, different medications tried and pressures re-measured.  When they have all the data they need, it will be done, he'll be brought to recovery where he'll need to be still for several hours (a challenge in and of itself) so he doesn't dislodge the clot over the artery.  Then we go home.  Ideally.

But there are so many places things can go wrong.  I mean, it's a foreign body in the heart.  His already sick heart.  Kids (and adults) code, their hearts stop, from time to time in the cath lab.  It used to be that Aaron tolerated anesthesia really, really well.  Not for the past few years.  It kicks his pulmonary hypertension AND his asthma into high gear.  Plus, in order to really get a feel for how he reacts to the meds, we have to stop his heart meds that morning, the ones that I never, ever skip. 

Can we say nerves??? 

Please, please keep our little guy in your prayers over the next few weeks.  Please pray that we can find better settings on the ventilator.  Ventilators already keep the pressures in the heart and lungs higher than they otherwise would be.  We need settings that will support him, but not go beyond what he needs. 

Please pray that he will tolerate the heart cath, and that we can get good information.  If you're so inclined, pray that we'll have better results than before.  It would be wonderful if he could get to the point where he could safely have surgery, but even if it's just that it's not quite as bad that would also be great.  I know prayer works miracles.  I've seen it.  I've felt it.  And once again, still, always, we're storming heaven's gates for another one.

We'll be fasting for Aaron next Sunday.  If you're Mormon, or even if you're not and want to join your faith with ours, we'd be so grateful.  (James 5:15)  This one has me worried.  I'm trying so hard to give it over to God and have hope.  Please join your faith with ours. 

Have Defiant Hope, because reasonable hope isn't really hope.

Lisa Copen

Slumber Party!

Aaron's slumber party was last week.  He actually did sleep.  I didn't. 

This was a BYOE party:  Bring Your Own EVERYTHING.  Even though you stay overnight in the hospital, insurance considers it to be "outpatient."  That means, just like when you go to your pediatrician for an ear infection, you're expected to bring everything your child needs for the time period.  This is what Aaron's needs look like for an 8 pm to 6 am study. I'm grateful it's an "off" month for his inhaled antibiotic, or we'd have two more meds in there.

Let me tell you, hooking this kid up was funny.  TONS of wires were "glued" to his body.  They measure EVERYTHING:  heart rate, breathing rate, the amount of work it takes to breathe, eye movements, leg movements, brain waves, everything.  He thought the whole things was a riot, and was soooooo "helpful."  He was having a party!










Fortunately, he was also exhausted.  Just after they turned out the lights, he went out, too.  Me, well, not so much.  There were all sorts of noises and it was kinda warm and I also had to do his 2 am meds and nebulizer treatment.  Oh, well.  They weren't studying me and I knew I'd get a good nap once I got home.

Wait, how am I supposed to grab the wires?

They changed his vent settings dramatically.  For pretty much his whole life, he's been on what's called "volume control" settings.  With that, the vent pushes in a certain amount of air and the resulting pressures depend on how flexible the lungs are.  They changed him over to a "pressure control" setting where the air pressure remains the same and the volume of air depends on how compliant his lungs are.  Theoretically, the pressure control should be better for him, especially with his increased needs.  Possibly it will be, if we can get the right settings.

6 am.  Time to wake up.  He's not so sure.

I keep trying to tell them that Aaron does much better asleep than awake.  He needs less oxygen, less support from the ventilator, less intervention.  I guess that's backwards from where the majority of patients are.  Most of them need much more help when asleep. 

Yeah, the new settings didn't work so well.

We changed him over on Friday afternoon, after the pulmonologist had a chance to read the study.  In the back of my mind was, "is this good timing?"  Someday, someday I might learn to listen to that little voice.  Yeah, Friday afternoon, three-day weekend (Monday was Pioneer Day, a Utah holiday), might not be the best option for big changes.  The hospital doesn't like to discharge on Friday or even Thursday with big changes like putting a child on a ventilator for the first time.  They want to make sure the patient does well for those first couple days at home while it's still normal business hours. 

He's not a fan of early mornings.

He did okay at first, but in the early morning hours he started needing more oxygen while asleep.  By the time the nursing shift ended at 8:00, he was at his baseline for late in the day and well above where he should have been for sleeping.  By 10:00, I gave up.  He was on the emergency tank at 12 liters and we were struggling to stay about 80% on his oxygen.  Even more telling, he wasn't interacting much at all.  He'd slept all night, but was exhausted and not smiling.  I gave up and called the hospital. 

Fortunately, I really know my ventilator.  The on-call doctor wanted to switch him back to his old settings.  Really, there was nothing else we could do.  This doctor didn't know Aaron, has never even consulted on him.  We knew the old settings had worked, they'd worked for years.  He was concerned that I might not be able to change them back and suggested if I was at all uncertain we really needed to come to the ER and have them changed there.  I'm really, really glad I've researched and played with this vent as much as I have.  I've even been known to show some of the newer respiratory therapists how to run it and changed settings.  So I had no problem at all switching back.  In fact, by the time we were done with the phone call, it was done. 

I don't know what happens next.  I've got a call into his doctor.  We'll see if they try again with higher setting or just leave things alone.  I'd really like to be able to make the newer mode work.  It should be so much better for his lungs and his heart.  He has a heart cath coming up on August 16th, and using optimal vent settings would give us the clearest picture of his heart health.  It's not good, it won't ever be good, but it would be nice to see exactly where he stands. 

This week is another quiet week around here, but I think it's our last one.  Starting next week, we have follow-up appointments for his scoliosis, his ears, and the heart cath, all on different days, of course.  We need to get his eye glasses and his new hearing aid.  Plus there are two soccer tournaments coming up and school starting four weeks from today. 

Speaking of school, we are, yes, once again, looking for a school nurse.  It would be one to two days a week, from about 7 am to 4 pm, and he would be the only one the nurse would be responsible for.  If you know someone with an RN or an LPN certificate who wants to spend their day with this cutie, please let us know!! 

"What hath night to do with sleep?"

John Milton Paradise Lost 

Sunday Morning Musings: Fire, Fun, and Challenges

As I sit here on a Sunday morning, helicopter blades echo their "whomp-whomp" against the mountains. The house is sealed up as much as we can, and there is a sign on the front door asking visitors to please go around to the back.

These two pictures were taken at the same time: top one from
my front lawn, bottom from my back yard.

Not opening the front door.

See, the mountain is burning.  Yes, our mountain.  Yes, again.  Halfway between where it burned five years ago  and three weeks ago.  While we hope it won't be quite as bad as the first one, it's definitely more than the second.  When I went into the garage this morning, I could smell the smoke in there, and outside it's more like when you're standing near the campfire, and the wind is blowing towards you.  Yeah, not so good for already sick lungs.



We're not in California, we're in Utah, so while the fire is pretty close, (last night's nurse could see the glow of flames through the blinds) we're not in danger from the flames.  But emergency asthma protocols are being implemented and this kid isn't leaving the house unless he has to.  Sigh...

Playing with Dad at the reunion.

July has been a bit challenging so far. It's been good with family reunions and all, but we've also had a really nasty stomach bug rolling through the house, and Aaron has never been one to want to be left out of the fun.  Fortunately, a stomach bug with a g-tube and nissen and diapers is much easier to deal with than it is with a typical child.  It's just the rest of us have had it, too.  No bueno.

Parades without scary noises are much more fun.

He did get to go out to the big parade on the 4th, and Daddy figured out how to stave off those awful noises that cause him so much trauma:  noise cancelling headphones.  And he kept them on!  Score!!

He's also been to the water park and pretty much just had a great time wherever he's been.  We head up to the hospital on Thursday evening for a slumber party (aka sleep study) to make sure his ventilator settings are where they should be.

Playing in his tent at the water park.

And that med we tried to stop?  Yeah, "tried" would be the important word.  It didn't work so well.  I figured we'd know better by the weekend, and oh boy, did we.  I ended up having to bag him a few times that Saturday and Sunday in addition to putting him on 12-15 liters more than once.  So he's now back on it.  We may try to change it out for another one, we may try one more time to take him off even slower than before.  But for now, until he's had both his sleep study and his heart cath in a few weeks, we're leaving things just as they are.  I need him to be status quo so that whatever the studies show, it's with him at his baseline, not with other systems messed up and playing with the numbers.

Fun times, huh?  At least this kid keeps smiling, and reminds me to keep smiling, too.  After all, isn't the joy what really matters?

“Very little is needed to make a happy life; 

it is all within yourself, in your way of thinking.” 

– Marcus Aurelius

Summer Fun

Seven years apart.  He has GROWN!

Life has been busy, good, but busy.

Yesterday marked seven years since Aaron came home from the NICU.  Seven years.  Had I been able to look forward to today, I don't think I would have believed it.  But I remember how overwhelmingly grateful I was that he was able to come home, that we could bring him here, love him, make memories, feel his sweet spirit.  

Trying to "help" the tech.

He had his "all you can eat" appointment the day after his birthday.  Overall, the doctors are pleased with what is happening.  We discussed some different strategies regarding his asthma, maybe using an antibiotic that has an anti-inflammatory component instead of a steroid the next time he has a flare-up in conjunction with a cold.

They've discontinued his acid reflux med.  That one has me a bit concerned, but only a little bit.  The thought is that since he's doing so much better on his blended diet, and he's bigger, maybe he won't need it.  The med does a great job at reducing stomach acid, but not just in the stomach.  It reduces the acidity of the whole body, including the lungs.  Oh, yeah, those lungs.  One of his two biggest challenges (the other being his heart).  And a more acidic environment helps to deter those nasty bugs that love to live, grow and thrive, and make him sick.

Pool party at school!

This weekend should really show us if it will work.  We cut his dose in half for two weeks and then stopped it on Wednesday.  It usually takes three to four days after stopping for symptoms to really rev up.  So far, so good.  I'm not seeing anything different.  So yea for better lung health, and yea for one less medication!!

He has his cancer screenings, which came back completely negative.  We expected that, but still, when the radiologist came in to do a few of the pictures himself after seeing the initial ones, I was nervous.  Aaron thought the slimey stuff was ticklish, and really wanted to help.

Stretching in the sun.

Aaron is going to summer school twice a week.  For those who think that cuts to services really don't matter, can I just say, they do!  Two years ago, in preschool, he got a six-week extended school year, three times a week.  Last year it was twice a week for five weeks.  This year it is only twice a week for four weeks.  Eight days of summer school.  ALL of Aaron's therapies, you know, the ones that strengthen his body, teach him how to sit up, roll over, etc, are provided through the school.  So from the end of May until almost September, he'll get a grand total of SIX hours of ONE therapy (45 minute session, once a week), instead of 45 minutes two to three times a week, plus his other ones.  We do what we can at home, but I'm kinda shooting in the dark.  I don't have the skills and knowledge that his therapists do.

He also got a haircut.  We're working really hard on helping him hear better, which means wearing his hearing aid.  It's really cool!  But if anything, including hair, is touching it, there's feedback noise. My poor silly monkey.  He's really not too sure about those clippers.  But true to his nature, he bounces back pretty quick.  After a bath, he was "all better" and ready to play.

This next week will bring cousins, aunts and uncles, and grandmas and grandpa.  Lots of family, lots of fun.  Summer time:  easy schedules, lazy days, late nights.  Lots of memories.

Summer is like childhood.  It is full of warm memories and gone too soon.

Kellie Elimore