Thursday, July 18, 2019

New Plan: Making it Work

A week ago Aaron went into the hospital for a lung CT scan.  Prior to his pneumonia in December, he was often off the vent up to eight or nine hours a day.

Since then?  Um, not so much.  Like most days, not at all.

I was hoping that with the new trach, all our problems would be solved.  (See how I work?  New equipment fixes everything, right?)

It DID fix a lot of issues, but not that one.  Some days we could do an hour or two, most days we had to throw in the towel after ten minutes.

Is it disease progression?  (Somehow that seems to be a common phrase.)  Or something else. 

Well boys and girls, it might be disease progression but there's definitely something rotten playing into it as well.  Something sticky and nasty and gross, and it's stuck in his lungs.

CT scan
Junk.  Mucus.  Snot.  Whatever.  And there's a decent chance it's been there since his pneumonia.  And not only is it blocking up individual alveoli, it's also blocking off sections of his lungs, trapping air, which means no gas exchange.  No oxygen in, no CO2 out.  Yuck.

So how to get it out?  Well, that's the rough part.  We've increased his vest treatments to three times a day and also added in something called hypertonic saline.

Normal saline is 0.9%, about what our blood is.  Our bodies are 0.4%.  Oceans are about 3.5%.  And the hypertonic saline we're nebulizing into his lungs?  7%!

Yeah, breathing in salty humidified air that is twice as salty as the ocean.  Doesn't that sound fun?

Um, not really.  And he doesn't like it either.  So three times a day (his nurses do one of them for me) he gets to do this.  He hates it.  I hate it.  He's fine with the vest and the albuterol pre-treatment.  But then the saline starts.  And within seconds, he starts coughing and gagging and retching.  We vent his tummy and he throws up whatever fluids and acids are in there (we do the treatment as long after a feeding as we can).  And we suction and suction and suction as he brings up the garbage that's been hanging out inside of him.

X-ray at Shriners
Did I say I hate this?!?  My poor baby.

But here's the thing.  He does it!  And he doesn't fight it.  He doesn't like it, but he doesn't disconnect, doesn't pull away.  He takes it.  We started this a week ago yesterday.  For the first several days, three times a day, he'd cry when I started the saline, but not before and not after.  Even though he knows it follows on the heels of the albuterol, he laughs and plays through it.  (And yes, he knows it's coming.)  The last few days, he's grimaced, but not cried through the treatments.  And as soon as the saline is done, he's back to being happy.  I mean, As. Soon. As. It's. Done.

How many of us can do that?  How many of us whine and gripe and complain about things we know will happen, have to happen, and then continue the grouse-fest once it's done?

And we're seeing results as well.  We do pull a LOT of garbage out of his lungs each time.  It takes about ten minutes or so to nebulize and we're suctioning pretty much all the time, giving breaks so he can catch his breath.  For the first several days, I didn't see any difference, except in the volume of secretions.  But the last two or three days, we're seeing lower oxygen needs, less sleeping, more vocalizations.  It is working.

We get to continue this until at least the end of August when we see pulmonology again.  It's still not fun.  But we're both settling in, him probably better than me.

In other news, we did his ear CT scan at the same time, but that looked good.  He also had his yearly scoliosis screening this week at Shriners.  The good news there is he's stable.  There's an error margin of about 4% and last year he measured at 44% and this year at 42%.  Now, you don't get to go backwards, but at least it isn't worse, which is amazing because once someone reaches at 28% curve, it's like a stack of dominos that just fall over.  So yay for a good report.

And now to see if I can match my attitude to his.

Attitude is a little thing that makes a big difference.
-Winston Churchill

Monday, July 8, 2019

In the Midst of Affliction

Two weeks ago, as I was trying to work through some things in the space between my ears, we sang, "The Lord is My Shepherd" in church.  The third verse reached out and (gently) knocked me upside the head.  (I don't recognize subtle directions very well.)

I've had a hard time lately, trying to process some things.  The long and short of it is, had Aaron been born today, or even in the last couple of years, his treatment plan would have been very different.  What was "not done" at the time, what was "too risky" for children with T18 is becoming standard practice now.

That's hard.  Really hard.  There are a few doctors doing complicated (and successful!) procedures now that were completely unheard of then.  The one he needed was actually pretty simple, but it is not an option now and hasn't been for several years.  His health just won't allow it.

Please don't misunderstand.  I am thrilled for these families.  Beyond grateful for the help they're getting. I just wish it could help us.  But the thing is, part of the reason the doctors are willing to take these chances are because of kids like Aaron, some of them because of Aaron directly.

Because in spite of all the statistics and odds and medical school training, some of our kids live, and thrive, and love life.  He's a pioneer.  But like the pioneers, he won't get to enjoy the nice smooth road that will be built alongside the rutted, muddy, bone jarring trail that he traversed.

And then there are other challenges.  Challenges that aren't Aaron's, and aren't mine to share.  But heartaches and struggles that I deal with as well.  Some temporary, like a distance separation from loved ones, and some much longer lasting.  But painful all the same.

But that line, "in the midst of affliction" doesn't end there.  It goes on, "my table is spread. With blessings unmeasured my cup runneth o'er.  With perfume and oil thou anointest my head. Oh what shall I ask of thy providence more?"

And with that gentle slap, or forceful nudge (whichever you choose), I actually struggled at first to find those blessings and perfume and table.  But you know what?  They're there.  And once I started looking, they became obvious, and comforting, and soul reassuring.

I have a wonderful son who in spite of all the odds, is still alive and happy and sassy and a nut.  I have a team of doctors who listen to me and work with me to explore options.

I live in a beautiful place.  A hike with friends to the poppies that overlook our valley.  Family and friends who are there with listening ears and prayers.  Grown kids who will drop everything to support family.

A granddaughter is on the way and her anatomy scan looks perfect.  A soon to be daughter-in-law who is amazing.

I have a home, a neighborhood, an online medical community with ideas and support and words of wisdom.  A friend that goes walking with me (talk about great therapy!).  Music,  Books to get lost in.  My bed.  The list goes on and on.

Yes, blessings unmeasured and unmeasurable.

He's nine.  Nine years old.  3312 days.  79,488 hours.  When you spend 17 weeks praying for just an hour with your child, to receive this much...  Well, there really aren't words.

My cup runneth over.  And it's a pretty big cup.

The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.

Sunday, May 26, 2019

Extreme Parenting

When you have a kid, baby, tween, teen, whatever, you're responsible to parent them.  You make sure they have food, clothes (waaaay too many clothes), shelter, things to do (tooooo many things!) and so on.  You teach them manners, they teach you insanity, you know.  It's life, right?  And no one with kids ever said it was easy.

But some people get into extreme parenting.  It's not enough to make sure they have food, you have to know the nutrition and calories, they have to have special food due to allergies, or lack of figuring out that whole "suck, swallow, breathe" thing.  You learn to place feeding tubes, and come up with ways to keep them from pulling that silly thing out.  You learn about oxygen saturation rates, and ventilation, and heart rates.  You learn seizures, and pray they don't show up.

You check to see not only that they're breathing, but make sure the oxygen levels are good, heart rate are good, the machines are working, meds are given, (meds are actually in the home! we have to use three different pharmacies) and so on.  You can't leave your child with the kiddo down the road, you have to hire a professional to take care of them.  And you end up on a first name basis with your paramedics and children's ICU team.

You figure out how to tell if the blood gasses are good or not, without the tests the hospitals do.  (Did not even know that blood gasses existed before!)

Yeah, extreme parenting.  It's a "thing."  Not one for the faint of heart.

It's been an "interesting" four weeks.  And I'm sorry, no, I haven't written.  It's not for lack of things to say, more of a too much to say and not able to figure out how to verbalize it.  This may be long.  I may ramble.  You've been warned, but I've had a few family members ask if they've been dropped off notifications because they haven't seen anything.  Nope, there hasn't been anything to see, mostly 'cause you can't see inside my brain.  Not that you want to anyway.

When last we left our brave hero, he'd come home from an evening in the ER because of blood in his trach.  That resolved fairly easily and we moved on.  But on Sunday, May 5, he got a tummy bug.  Poor kiddo was really miserable!  It took a couple days to get over, but he's got the calories to spare, so it wasn't too bad from a medical standpoint.  At least for the next few days.

By Friday, he ran a fever and started pulling at his ears.  Yeah, all that retching and vomiting caused fluid in his ears and an infection.  I felt so bad.  If you haven't had one, or don't remember, imagine a hot needle poking right through your eardrum.  Ouch!!

Silly kid things removing Bunny's trach is funny.
His own trach ties are taped down.
We did the antibiotics and got our new trachs.  But I was told we needed to come into clinic to change to the bigger one. The next appointment was a month away.  Meanwhile, he was getting tired, almost in a life-weary way.  His oxygen needs had stayed way high, not really coming down even though he acted like his ears weren't bothering him anymore.  We had tried to start vent weaning before he got sick, and it went "okay" but not great, and then stopped all together when he got sick.

Not only were we not able to start the wean again, we couldn't even maintain him on his regular vent settings.  We had to increase to his secondary or "sick" settings, and still, he struggled.  He spent most of his time maxed out on his oxygen and we were forced to accept lower sats that we really wanted, like down to 80-82%.  Frankly, one of the reasons I haven't written is that sometimes it's just HARD!

The way things were going I figured there were two options:   try putting his new trach in and see if that helped, or take him in.  We couldn't maintain at home this way any longer.  I called for permission, left a message, and after 48 hours, just put the new trach in.

It hasn't been all roses since, but So. Much. Better!  Within an hour, we were able to reduce his ventilator back to primary settings.  He was still high on oxygen, but it was doable again.  The next day was rougher as he was sitting for the first time.  See, the new trach is slightly wider and slightly longer.  So his trachea has been used to the smaller one, and now there was more irritation and more coughing, which equals more secretions etc.  (The reason you've got mucus when you're sick is because your throat is irritated by the virus.)  So more secretions means slightly lower sats, but still!  Primary settings!!

Visiting family graves for Memorial Day
The past ten days or so have been ones of improvement.  He's awake more with more energy.  He's stayed on primary settings even with the higher pollen counts and increased need for albuterol (which we were using before but not getting any help from).  His oxygen needs are still higher than I'd like, but we accept lower sats much less.  And his voice is even coming back.  We lost it when we put the bigger trach in as it's harder for him to push air past the new trach up to his vocal cords.

The long and short is the new trach is helping, a lot.  But the team is also probably right.  His pulmonary hypertension is probably continuing to worsen.  But the new trach seems to help him ventilate more, removing more of the CO2 he's trying to get rid of.  And next week, we'll start trying to wean again, starting at 30 minutes twice a day.  If that works, we'll move on from there.  If he stalls out again, they'll do a lung CT some time this summer to see if there's more we can learn about what's happening.

He even made it out all day on Saturday to visit family graves and deliver flowers. 

So there you have it.

Extreme parenting. Exhausting, sometimes terrifying. 

But it's so worth it.

Being a Mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed.
Linda Wooten

Sunday, April 28, 2019

Crazy Adventures

So, the last post about our spring break and all...

What, you don't remember reading it?  I guess that's because I never managed to finish it.  Here's what it said in a nutshell:

Spring break was at home (glorious!) for only the third time in his life.  We saw the dentist and eye doctor and both were very pleased.  He saw sharks and butterflies and all sorts of other creatures at the Mascot Miracle Night at the Aquarium, and was enthralled.  Fun night to see other families on our crazy, special needs journey.

The next week he went for his all-you-can-eat appointment with several specialists.  Long and short of that is we're going to try to very sloooooowly start weaning from the vent again.  "Very slow" as in it will take us two months to get to four hours a day.  Prior to his pneumonia admit, he often did up to eight hours.  That's okay.  It may have been too much so this way we'll find out just what he can tolerate.  He's also getting a new trach (as soon as it comes in).  I'm hoping that his current oxygenation and ventilations issues are due to the small pixie stick he breathes through.  His team isn't so sure.  They think it's "disease progression."  We all hope I'm right, but I guess we'll see.

And that mostly brings us up to this week.  Yeah, adventures....

He and I differ on which is worse (harder to process, deal with, whatever).

Over the past ten days or so, we've started pulling blood out of his trach.  At first, it was just a little pink stuff.  Then some more.  Occasionally redder. He started coughing up some. Then it was a clot, then two.   Tuesday night, he coughed up a bunch of stuff that got stuck in the ballard.  When I went to clean it out, it was a clob of blood and mucus and maybe some tissue.  (TMI?  sorry)  On Wednesday, I pulled five (5!) clots out, and they were pretty good sized for where they were coming from.  And then he coughed up some frothy pinkish red secretions.  By Thursday, I was done.

See, it was likely not a "big" issue.  But we'd done a trach change the week before with no bleeding and no signs of granuloma (where the body tries to heal itself by creating scar tissue which can bleed quite a bit).  We haven't changed medications, he hasn't been sick and showed no other signs of illness.  Slightly higher on his oxygen but not much.  So there was nothing we could point to that would cause this.  Except there was the slight possibility that it could be something really bad, really, really bad.

There's an artery that runs just behind where the trach sits, and sometimes, very rarely, the trach rubs enough on the trachea to wear through to it.  Remember first aid?  Remember what happens when an artery is cut?  Yeah, Not. Good. At. All.  And you can't just put pressure with your hand on this one.  It's behind the trachea.  Which leads to the lungs.  Where you breathe.  Without gills that a fish has.  Where liquid isn't your friend. 

See my problem?

So after researching exactly what emergency procedures would be, and the likelihood of them working....  Well, let's just say it's more than I wanted to deal with in so many ways.  (There are some, and I was prepared to instruct paramedics exactly how to handle them.  Wanna talk about stress?  Trust me, you're better off not knowing.)  So we went up to the ER on Thursday night.

ENT scoped him out and yeah, there's a raw, pretty much open sore in his trachea.  But it's below the trach site, so probably from too deep and too vigorous suctioning.  Who?  Who knows.  Good chance I've been helping with that.  But they prescribed some drops for it, antibiotic and anti-inflammatory drops to help, and we're pulling way back on his suction depth.  It wasn't much before, and pulling back means possibly not getting "stuff" that should come out.  But he's got a decent cough so we'll help him out that way.  She also took a look at the area where his trach actually sits.  (We had to pull the trach out for that.) The good news is that it looks really good there.  So Mama's breathing much, much better herself.

Now for Aaron's traumatic issue.  Mama did that one, but didn't really mean to cause a problem.  Michael had a piano recital yesterday and we stopped to get a treat on the way home.  I had an awesome tropical shake and felt sure that if he would just taste it, he'd decide that maybe it was okay to sometimes have things in his mouth.  He was pretty sure he didn't want any.  Used one hand and then the other to push it away, clamped his lips tight and turned his head.  Except, Mama knows best, right?

So when he was just kinda hanging out, looking the other way but with his mouth open a little, I stuck a small bit in.  It was only a tiny amount, maybe a half a teaspoonful.  But you should have seen the look he gave me!  He did move it around and swallow it, but he was Not. Pleased.  It was a look of astonishment and betrayal and "how could you?!?"  And I don't think he took his eyes off me again for a long time.  I did try to gently offer some more, just in case he realized it was good stuff.  NO THANK YOU!!

So I guess it's a good thing he's got his g-tube and blended diet.  But he really didn't know what he was missing.  I think he might be okay with that.

On another note, my tulips are blooming, the sun is out, spring is here.  Life is good.

When flowers bloom, so does hope.
Lady Bird Johnson

Tuesday, March 19, 2019

T18 Siblings and Life Lessons

Yesterday was Trisomy 18 Awareness Day.  Did I get pictures?  Not really, sorry.

Missionaries in Alexandria, LA
wearing blue for T18.

But his siblings wore blue.

His brother on a mission for The Church of Jesus Christ of Latter-day Saints (Mormons) even got his district to wear blue.  It was their P-day (preparation day, which means laundry, shopping, cleaning, etc) day, so they're wearing casual clothes, but he sent me pics.  ('Cause like I said, I didn't get them taken.)

Before he was born, Aaron's siblings (you know, those kids who were already here) had (relatively) normal lives, did sports, music, school stuff and had a mom who was involved with all of it.

Guess what, it's still that way, mostly.

When Aaron was born, and then when he was trached, I was told point-blank that he would ruin their lives.  It would be too hard on them to have a brother with such significant disabilities.  That Aaron would be too needy, it would be too hard.  Basically, it was wrong of us to try to make this work.

This is a common theme.  Parents are often told it's just not fair to the family to bring such hardship into their lives, especially if they have other children.

And it was hard, and it IS hard.  It's hard for them.  It's hard for us.  But you know what?  There were things that were hard before he was born, things they struggled with as kids, that we struggled with as parents.  If someone doesn't have difficult things in their lives, well, I guess they're wrapped in cotton and bubble wrap, and frankly, they're probably pretty boring too.  But honestly, I don't know anyone like that.

Ask a parent, any parent what kind of life lessons they really hope their kids learn, learn so that they're an intrinsic part of their fiber.  I'd be willing to bet that finding happiness, fostering close relationships, persevering, learning to overcome would be top of the list.

I asked my kids what lessons they've learned about themselves, or about life from Aaron.  What he's taught them.  Guess what they said?

Michael (12)  "He's taught me to always be happy.  He's fun to play with.  And he likes it when I bounce his yellow ball off his head.  He never gets mad at me."

Andrew (15)  "You can be happy even when things are hard or aren't fun."

Joseph (18)  "He is a rock. When I was preparing to serve I was really wanting to know that what I had been taught was actually the truth because I don't want to be saying things that aren't true. I wanted to know what was going to happen to him. I had always been taught that he already had his ticket. I really came to know for certain when I asked a preacher down here what he thought about it. What he said chilled me and solidified in my mind that a loving Heavenly Father would not send one of his children to hell because they are not able to be baptized. He told me in a very round about way that Aaron was going to hell. I thanked him for his opinion. We were in a recent convert's house and she asked me if that helped me and I said, "No, I already know where he's going." Growing up with him was a great way for me to "grow-up" quicker and mature quicker. I took more responsibility for my actions because of it and I always want to be there for him because he's my brother."

Matthew (20) "He's my inspiration for staying optimistic, no matter how difficult my circumstances are."

Jonny (23) "Aaron has taught me that you can live a happy life even while suffering through painful trials that are not your fault."

David (25)  "Aaron has taught me to persevere with a smile."
Mary (26) "Aaron has taught me how to hold onto faith and work through my fear.  Helping to care for him has pushed me to work through my discomforts to serve others.  He has taught me to greet my challenges with a smile (even though I still struggle with this) and how to take a deep breath when I am overwhelmed.  I have learned more about love from him than I thought I could.  So much of my life and worth is measured in how I contribute to my job and to society, but with Aaron, I have learned  how to value more the unseen contributions that shape how I  treat other people and the value I grant myself and others.

Deborah (27)  He brought our family closer than we've ever been before."

Yep, definitely ruined these kids.

Now, does this mean that life has been awesome for them?  Does it mean that they haven't struggled from time to time?  No, not at all.  We managed to somehow keep their activities going, but due in large part to a lot of support from other teammate's parents.  Mom hasn't been to nearly the number of soccer games as before, and has also missed concerts and other events.  Aaron has managed to land in the hospital on the major holidays, and most (if not all) the family birthdays at one point or another.  Sometimes it is hard!

But last week when my eighth grade girls were bemoaning combining with a seventh grade boys PE class, I started telling them about one of those little "Sevie" boys.  Told them that he saved his brother's life on more than one occasion.  That as a little preschooler, he knew his numbers between 80 and 100 before he knew 1-20.  That he was able to change out a trach, draw up meds with a needle and syringe, and give feedings through a tube in the stomach.  And they were pretty impressed!  (Although they still weren't jazzed about combining classes.)  

But look at what Aaron's siblings have learned.  Isn't this what we really want for today's kids?  Aren't these the kinds of lessons that today's youth (and today's adults!) need to know?  Happiness is what you make of it.  You're responsible for yourself and for others.  Look out for one another.  Life might not be what you hoped for, it might be hard, but you can still find joy.    And family is everything.

Now for a quick update about what's been happening here:  

When I last wrote, I talked about how Aaron had gotten sick, and with a pretty nasty virus at that.  But guess what??  He. Stayed. HOME!  We went through the usual ups and downs, but where we could handle it.  His pulmonary hypertension kicked in right on schedule, which also was a challenge, but one we could handle.  I think we might have bagged him a couple times, but that was all.  He really did well, and I have to think it was the change in food that let us deal with it here.

I did manage to get the flu about ten days ago.  THAT was miserable!  I pretty much lived either in my bed or on the couch for four days while Tamiflu worked it's magic.  If I had to go in Aaron's room, I gloved, masked and wore a robe that I only put on in there.  And I think we're far enough out that it's safe to say I didn't give it to anyone else.  Thank goodness.

And I think that brings us up to speed.  

Show me someone who has done something worthwhile, and I'll show you someone who has overcome adversity. 
Lou Holtz

Saturday, March 2, 2019

Changes Part 2, Or Aaron Gets Sick

Like I said before, after changing Aaron's food, he seemed to be doing really well, until Tuesday.

Tuesday morning he was a bit whiny, very tired, more than usual.  He went to school, but wasn't really into it.  That night, he was still a bit cranky and his heart rate was higher, too.  Oxygen was still good.  We didn't have any junk in his trach.  His lungs sounded amazing!  But still...

I gave him his Tobii and asked him if he was sick.  He pretty much ignored it and turned over to take a nap.  A little later, we could hear him in his room "speaking."  He was listing out everything that hurt.  Eyes, nose, face, head, hair, ears, nose (again), eyes, eyes, eyes, and then kidneys!  Kidneys??  Yeah.  First of all, apparently he likes the kidney picture according to one of his school nurses, and second, I think he was trying to say he just hurt EVERYWHERE!  Poor kid.

He slept well that night, and again, still nothing to indicate that he was sick.  I actually wondered if he might be just out of sorts, although he was sleeping more than usual.

Um, nope, he was sick.  The next day he started running a fever, and his eyes were watering a TON, plus his nose started running.  Yeah, sick.  And my mama heart was worried.  Sooooo many people around here have the flu.  Primary's is SLAMMED right now with all sorts of nasty bugs.  They've been double bunking in some of the PICU rooms, and they've also overflowed into the Neuro Trauma Unit on the same floor.  I've been told the infant unit is double and even triple bunking, and there has to be a medical consult to admit any patient who is over the age of 15.  It's bad right now, really bad.

And Aaron had a fever, and was miserable, and his nose had started....  You know where my mind was going.  I called his ped and got orders for a viral panel and we went down to the hospital.  Let me tell you, this kid has amazing patience and fortitude.  If you've never had a flu test, it's nasty.  They take a big ol' (sorta) flexible swab and go up your nose and to the back near your throat.  Yeah, YUCK!  He's had so many, but just grimaces and shakes his head after.  He's a trooper.

Good news is that it came back negative for flu.  Bad news is that it was positive for a coronavirus.  For most of us, that's a cold, but maybe a cold on steroids.  It's pretty rough.  The particular strain he picked up usually hits either the upper airway and sinuses (nose, eyes, etc) OR the lower down in the lungs.  Fortunately for Aaron, it's lodged in the upper airway.  Unfortunately for him, that means we're suctioning his nose a lot, and he likes that about as much as any little boy would.

But we're at home.  He's back to playing, throwing pies at his brothers and smiling.  As long as the pulmonary hypertension doesn't go out of control this next week, we should be sitting pretty.

And thank goodness we got his food changed over!

Enjoy the pie throwing! (He's using his
eyes to move the cursor.)

“The art of medicine consists in amusing the patient while nature affects the cure.” 

Changes, Nothing is as Constant as Change

I'm not quite sure how it's been almost a month since I wrote.  But you know how you have a ton of things to do, and because there's so much, you just don't?  And then you get even more, and so you "don't" some more?  Yeah, that might be what's happening here with Aaron.  There's been a lot going on.  Oh, not all at once (mostly) but over time it adds up.  I keep thinking, I then I don't.

But this isn't just to keep others up to date.  It's my way of documenting how things are going, what we're changing, what's happening between those awesome, terrifying moments when things are turning on a dime.  (yeah, read "awesome" with a touch of sarcasm, will ya?)

Anyway, a month or so ago, Aaron started struggling again and we didn't know why.  He's still on the vent 24/7, but he was having some funny desats.  Then he needed more oxygen.  After a little while, we noticed this was more obvious just after eating, but it wasn't necessarily resolving between meals.  He really wasn't plugging, although we had several trach changes in there just to make sure.  His dirty diapers were "okay" but pretty firm, and not as much as he should have.  And his lungs sounded great!  What??

It got worse.  We started needing to bag him occasionally, and then more often, sometimes once a day.  Or he'd be on the tank because he needed more than the ten liters our concentrator goes to.  We'd try albuterol to open his lungs more, suppositories to make sure he was getting "cleaned out."  Sometimes he seemed a little uncomfortable, but still.  More trach changes (with nothing at all in the trach).  What was going on?

It kinda came to a head last weekend.  He was just a mess as far as his oxygen went, but no other signs that we could see.  I figured we just needed to make a change, and went back to blending his food.  I still had some frozen bone broth and frozen fruits and veggies, and added in the other things I needed.

Now, I stopped blending for a few reasons, mostly my own sanity.  We found what we felt was a really good substitute, an organic, plant based formula that looked a lot like my own blends.  It does have more oils in it than mine does, but that was okay.  And for a while (like late last fall 'til now) he did well on it.  It's not hard to blend for Aaron, really.  It's easier than meal prep for the rest of us, but still.  It's One. More. Thing. on top of everything else.

Except I guess when you eat McDonald's Happy Meals every day, eventually your body isn't too happy.  And that's what I'm going to have to consider this substitute to be.

Given that the rest of his vitals were good, he looked good, he sounded great, he was active and happy and all that stuff, I decided that if I could switch him back to blended diet over the weekend, and just try to baby him through the next few days, maybe we'd be okay.  And that's what we did.  Saturday was kinda rough, but he did okay.  Sunday was a bit better.  Monday was even better.  I think we figured it out.

And apparently, just in time.


Tuesday... well....

I need to put these in two posts because this is already too long.  And like I said, I use the blog for my own records and I'll probably need to find this info again.  I promise, I'll get the next one done quickly.  (I hate books that don't really "end" and leave you waiting for the next installment.)

"Let food be thy medicine and medicine be thy food."