We're Having a Rough Time.

UPDATE:  I gave up and we're at Primary's being evaluated.  We'll see what happens.

The title kinda says it.

Had we not escaped on Wednesday night, we'd still be there.  In fact, the jury is out on whether or not he has to go back.

Thursday was rough.  He probably spent more time on the bag, or being bagged, than he did on the ventilator.  Friday was a little better.  Yesterday was bad again, and today, well, let's just say it's not looking like a banner day.

I'm not sure what's going on.  I've pulled out everything I can, vest treatments, albuterol every 2-3 hours, everything.  His lungs sound better after a treatment than before, but somehow, he just can't keep his sats up.  His heart rate and respiratory rate are high as well.  But no fever, so that's good.  I just can't figure it out.

Anyway, I sorta promised a look back at the pictures I put up for Trisomy month.  And frankly, I don't think you really want to deal with the dark thoughts that I've been working through.  No, he's not in danger, it's just the kinds of things that go through my mind whenever I cut his hair or put his monthly supplies away.  And really, I don't want to dwell on those thoughts either.  So here goes:

March 6 When the doc wants to stick a camera down your throat and the techs poke you three times to get blood, you bring big brothers along as backup. 











March 7  I took a trip up to Shriners today to have my wheelchair looked at and came away with a nifty new sunshade. Also saw some friends up there having work done on their own chairs! Fun times! 











March 8  Off to school. Another day of 1st grade.















March 9  Spring is coming and with it comes outside recess and lots of sun. But Aaron's eyes are really light sensitive so he borrowed mama's hat today and can actually open his eyes outside. 





March 10  Since I'm away all day, I'm sharing a video from his Valentine's dance this year. The ladies just love him. 















March 11 Siblings, yeah, they're kinda crazy. But they keep each other grounded and rather than getting caught up in the "Trisomy" he's just their little brother. Plus, he never gets into their stuff. 

March 12  Trisomy awareness. Could his smile be any sweeter? 

















March 13  It's March 13, Trisomy 13 day. T13 is also thought to be "incompatible with life." That cutie in the middle will tell you otherwise.

March 14  Aaron never figured out how to protect his airway when he eats, so he gets his food through a g-tube. This is what he gets in a day, essentially a smoothie where I can vary his protein, fruits and veggies, you know, like we do.



March 15  Poor baby had a really rough time yesterday afternoon. Asthma? Getting sick? Lower GI issues? Not sure, but I've got my phone on at work today. 

March 16  
Aaron has night nurses that care for him while we sleep. Staying awake can be a real challenge. One crochets to stay alert and one morning I found Yoda in Aaron's bed. He loves it! 









March 17  Symbolism. Green for the Irish, blue for Trisomy 18, and the butterfly for all the children called Home too soon. Who will wear blue with me tomorrow for Trisomy 18 Day tomorrow? 






March 18, two pictures for Trisomy 18 day!






Wearing blue and rockin' that extra chromosome!

It's hard to see, but the Lone Peak Ultimate team is wearing light blue armbands for Trisomy 18. Plus a blue A on the disc!









March 19  You've got good days and bad days. Sometimes you're pulling out all the stops just to keep them here. Today is one of those. But it's so worth it.

March 20  He's home sick today, but had lots of fun last week at school. He even helped make the snacks! Yeah, the ones he won't let anywhere near his mouth. Silly boy.

March 21  Aaron thinks Primary Children's is an awesome place to vacation. Fortunately, it's been a while since he's taken "time off."

March 22  One of my favorites. There's something up his sleeve, but he's not saying what.












March 23  Trisomy awareness. Aaron gets his food though a button that goes directly into his stomach. Besides the medical advantages (no food in the lungs is kinda important) there are some other great benefits. He gets to sleep in longer and we don't have any two hour long I-won't-eat-a-bite-it's-yucky" meals. I may or may not have occasionally threatened my other kids with one...





March 24  Aaron had a great time last night at big brother's band concert. He loves music!

March 25  Hanging out in his stander, trying to decide if he should put his feet down or just let his big kids push him all around and not do any work.



March 26  A few weeks ago Aaron used his communication book to say twice that he wanted to "play with Michael." Michael was sick at the time and staying away so Aaron wouldn't get sick. He missed his brother. This kid knows what's going on. We just have to find the way to unlock the communication.

March 27 Aaron provided the inspiration for Michael's science fair project- How weather patterns affect our breathing. They do! And now we're at the state level. 








March 28  Late afternoon nap after working hard in school. Pictures of that tomorrow. 

March 29  Aaron LOVES school. Learning to write his name, being with friends, reading books. What could be better?
















March 30  Learning about the weather and the sounds different letters make. You know, first grade. 












March 31  Fun at school!

The worth of souls is great... 
Doctrine and Covenants 18:10

  

We Made It!

We did it, we made it home.

It was a bit questionable there for a little while.

In the past, Aaron has come out of surgery and just woke up.  Oh, he opens his eyes, looks around, and decides that his naptime isn't quite over.  But mostly, we can coax him out of it.




Yesterday, he wasn't playing.  He just kept on snoozing, and at a fairly high rate of oxygen.  When he eventually did (sorta) wake up, he still wanted a lot of oxygen, much more than I was capable of transporting him on.  So we waited, and we talked, and threw around options.

Finally, almost four hours after he came out, I gave up and said we needed to start talking to the team on the floor about admission and called William to let him know we wouldn't make it home.  He must have heard me and rethought his game plan, and he started doing a little better.   Not much, but enough to have us guessing again.

We did finally get him down to where I could bring him home, and I gave him 15 minutes and ran for it.  He did bounce a bit up and down, and I used the whole tank getting him home, but we did it!  We slept in our own beds for what was left of the night.  (Got here just before 1 a.m)

This morning he's still a bit wonky.  I'm trying to decide if the goop I'm pulling out of his nose is surgery related as he heals, or the nasties his brothers have had.  I'm leaning towards the surgery.  When he had his adenoids out, we suctioned and suction for about a week as his body tried to heal. 

So we'll hunker down, be grateful it's Spring Break so we don't have to go anywhere, and just relax.  At least relax in between all his treatments, cares and meds.  But that's okay.  We're home.

Nothing reduces the odds against you like ignoring them. ~Robert Brault

Surgery Day

He was in high spirits when we got here.

It's here, we're here.

They got Aaron in on a last case surgery for today.  It should be easy peasy.  It should be no big deal.  I should be able to handle this.  After all, I've certainly done it enough.

Yeah, and maybe that's the problem.  I've done it enough.  Oh, there are no more surprises in the pre-op area or waiting room.  I know the drill, I know the rooms, the people, the set-up.  I know that they're going to take him away, and I'll wait and wait.  And time becomes really fluid.  If I can focus on something else, it speeds up.  And then I watch the clock and it crawls almost to a stop.

If I can't see you, you can't see me.
Like his shirt?  #Wasn'tMe

I know the speech:  Heart kids, pulmonary hypertensive kids, they have more risks, it's harder, but they generally do well.  We'll watch him close.  His is pretty high, huh?  Yep, pretty high.  That's a good way to describe it.  Pretty high.

So tired, thought he'd take a nap before
surgery.  Silly kid, he's going to get to
sleep even more.

We're supposed to go home tonight. Surgery is supposed to be about an hour.  There will be about ten stitches around his stoma in his neck, but they're dissolvable, and unlike the original surgery, if the trach comes out, or we have to change it in the next day or so, that's okay.  But better to wait a week or two.  Yeah, nothing too extreme, earth shattering.  But still, it kinda feels like it.

Most of the time, honest, this trach life is no big deal.  Really, we don't even really think about it.  Even when there's a plug, we deal with it and go on.  But this week, well, this week trach life has been really rough, at least in the space between my ears.

And he's off.

I've come to realize that there are things I couldn't imagine ever doing, that I know I WOULD do if I had to.  I'll spare you the details, but if the trach came out, I would get one back in, no question, regardless of what had to happen.  He would have an airway.  He's my son, and I would do it.  Not being sure that someone else would meant that I couldn't leave him, or let him leave, with a nurse.

But now that he's in, the trach, the airway, will be just fine.  We'll have a secure airway again.  Now it's his heart.  Can his heart handle this?  I'm actually fairly confident that it will, eventually.  But will that awful pulmonary hypertension rear its ugly head?  Will we end up with an extended stay?  It's been a long time since we've been allowed to go home the same day of a surgery because of that ugly beast, but today we're hoping.

Yesterday with his brother at the Museum of Art.

So I'm sitting here, waiting, praying.  There are others in here waiting, too.  And we all hope, pray and wait together.  Praying for surgeons, praying for our children, praying that it all works the way it's supposed to.

UPDATE:
The tech just came out to get his wheelchair with vent.  It looks like they're done, although he's not awake yet.  I'll be heading back to see him soon.  That really was fast, which hopefully is a good sign.  Less time than they expected, 40 minutes instead of an hour.  A couple years ago it was an hour 20 instead of 15 minutes.  I think I like this one better

"You never know how strong you are until being strong is the only choice you have."

Our Latest Adventure

I know, I know, it's been far too long since I updated anything.  In my defense, I'm still not 100% from being sick and I've been working full time.  Plus, while it's been busy around here, it's the normal, ever day, run of the mill stuff, mostly.

I did also manage to get up an Instagram/Facebook post for every day in March.  Sometime soon (I hope) I'll reproduce those on here.  We'll see.

Anyway, a little background and what's going on now.  We have two newer nurses on board (who I love!) and they're working out well.  But one of the things that they have to pass off with me is a trach change.  They have to know, and I have to know, that they can and will do it if necessary.  Until they're left alone with him, it's not that critical, and I've been putting it off.  Like I said above, we've been busy, I've been tired, and also in the back of my mind was something about it not being a great idea. 

In fact, this week I planned a couple different times to have one or the other do it, and then backed off.  I just felt uneasy.

But yesterday afternoon, he was struggling again with his oxygen.  I'd done everything else, so I figured I'd change out the trach.  It'd been a while since his last change and it certainly couldn't hurt.  Except it could, and it did.

When I pulled the old trach out, there was quite a bit of scar tissue that also came up to the surface of his stoma (the hole).  I knew immediately it was going to be hard to get the new one in, but I tried.  And I tried.  And it didn't work.  I grabbed his back-up trach.  It doesn't have a balloon and it's made from a stiffer material.  It should have slid in easy.  Yeah, should.  I did manage to get it in, but not without some significant trauma. 

A couple years ago we had another issue with a trach change and I took him down to our local hospital where they helped me get it back in.  I knew from what I saw that this time it wouldn't be as easy.  So on up to Primary's we went last night.

As a side note, I was all excited about a weekend with nothing on the schedule other than General Conference.  After working full time and all the kids' activities, I figured I wasn't even going to get dressed, let alone leave the house.  Aaron apparently had other ideas.

Anyway, when we got up there, the Emergency Room Respiratory Therapist (RT) was one that knew us well.  I think they all do, another advantage of going up to PCH.  He called in another to help and they tried to get his original trach back in.  He pushed, HARD.  It wasn't going.  So they called in the ENT resident.  He came, looked at it and spoke to me, left and called his attending, and then came back with his chief resident.

Can I tell you this was a little unnerving?  I mean, it's his AIRWAY.   If something goes wrong with the ears, the stomach, whatever, well, you've got a little, or sometimes even a lot, of time.  But the airway?  Nope, you get it quick or you never get it.  There really aren't second chances if you're not prepared.

Cuffed ET tubes

So with that in mind, they looked down his airway, just like we did a month ago.  (It looked great then, still pretty good yesterday.) Then they got ready.  We had his regular trach, a slightly smaller but still cuffed trach, the uncuffed one we'd put in twice now, and then some ET (endotracheal) tubes of various sizes.  Those are the ones they use on the rest of us for surgeries, etc. 

If we got to that one, we wouldn't be going home.  Actually, it was open for discussion if we got anything except his regular one whether or not we could go home.  But with an ET tube, he would have been sedated and admitted to the PICU.  I mean, this kid wears onesies all the time because that's the only way we keep him from pulling out his g-tube.  No way he'd leave an ET tube in place. 

Yeah, there were definitely some rocks in the stomach. 

But with a lot of effort (again) we did manage to get the regular trach in.  We're pretty sure that putting in the other one twice managed to knock loose some of that tissue that was blocking his stoma.  But now I get to make a call up to our regular ENT tomorrow and get him on the surgery schedule.  And we're watching that trach like a hawk. 

I've also pulled out more trachs, smaller ones, and I've found the masks for his ambu bags.  Without a trach, if we have to bag him, it's going to be hard.  We'll have to go over his nose and mouth like anyone else, while also plugging his stoma.  And he won't be left with anyone until we've got a better plan in place.  If that trach comes out or gets plugged it's potentially fatal, and that's not something I'm willing to entrust to anyone else. 

Good thing it's spring break, right? 

"Life is either a daring adventure or nothing at all."

Helen Keller

Trisomy 18 - Joy in the Journey

Once again, I've got way too many thoughts going 'round, and no idea how to organize them.

It's Trisomy 18 day again.  And yes, Aaron is still here.  It's kinda funny to tell people that he's "incompatible with life" and watch them try to work how how the way they understand the meaning of those words can possible fit what they see in Aaron.

"Wait, but isn't he..., uh, doesn't incompatible..., um..." and you can see the wheels turning as they try to figure out if incompatible means something other than what they've always thought.



Nope, that's what it means, and yep, he's alive.

Recently Iceland proudly announced that no babies with Down's Syndrome had been born in the last five years.  If you look deeper, it's actually nine.  None, and they're proud of it.  That doesn't mean they haven't been conceived.  It means they weren't born alive.  And those babies are considered to be "compatible with life."  Does that tell you anything about Trisomy 18 or 13?  Or other disabilities?  And there are many here in this country, many medical professionals, who thing that's the best thing for all these babies and their families.

I disagree, on so many, many levels.  As I've said many times, if you measure a person's quality of life, and their contribution to society in money or achievements, no, he won't measure up.

But if you measure it by the joy they give and receive, the ability to inspire others and influence for good, these children, these "teachers of our souls" have tremendous worth.

And if you believe in the divinity of man, of the human soul, the potential is infinite.

So let me share a couple of funny snapshots of his life.

A few weeks ago there was a BIG (at least in our home) game on TV.  BYU was playing number one, undefeated Gonzaga.  (Most of us bleed pretty blue in this house.)  It was a rough start.  At one point BYU was down by 18.  But they battled back and people started getting excited.  By the time it ended with BYU on top, there was lots of yelling and jumping around and happy faces.  And Aaron was going right along with all of it.

He was laughing and smiling and waving his arms around, really getting into things.

And then Aaron went over and said, "you do know that was BYU and not Utah, right?"

It was like someone threw a switch.  His face went dead, no laughter, just a look of "you're kidding, right?"  Someone had just rained on his parade.  Oops.

When he was tiny, we asked someone where the handicapped parking was because we had a disabled child in the car and the seven-year-old piped up with "who's disabled?"  When he thought about it, he knew, but that wasn't something he ever really considered.  Aaron was just another brother.

About the same time, our four-year-old was looking through his own baby pictures and was trying to figure out how we hid his tubes and wires, 'cause that's what babies have, right?  It's just the way it's done.

And then last year, that four-year-old now nine years old said he was hoping someone he knew had a baby with T18.  When I asked why, he said it was because then they could have a great younger brother like him, and the family could have someone special in their home.

These kids, these kids whose lives I was told would be ruined (yep, I was told that) by their younger brother, have grown so much.  Their lives have not been ruined, they've been enriched.  All of ours have.

This past week, he's had some struggles.  I'm not sure what's changed exactly, but his lower GI system has slowed down again.  And when he gets "backed up" it puts pressure on his diaphragm and his lungs.  That leads to not breathing well, that influences his heart, and so on.  Fun times, let me tell ya.

I'm not the one you want to watch a medical drama series with.  I always laugh in the wrong places.  Music gets dramatic, voices get upset, and I'm laughing, 'cause I'm sorry, ain't nobody in a hospital gonna worry about oxygen sats at 90%, and they're certainly not going to intubate, bag them and put them on a ventilator.

Goofing off at school this week

But when your kid is having trouble getting out of the lower 70's on 12-15 liters, you start getting a bit worried yourself.  Except he's acting like me watching med shows and belly gut laughing.  I mean, how do you call 911 with that?  He's thinking it's the funniest show on the face of the earth.  Stinker.

There were a couple days like that, but he seems to have settled down now.

And today we'll be all wearing blue, even those who are playing on non-blue sports teams have blue fabric tied on their arms.

Let's see if we can turn things blue today.

Let the world know about Trisomy 18, about the good things, that it doesn't have to be incompatible with life.  And it certainly can be "compatible with joy."

Let us relish life as we live it, find joy in the journey, and share our love with friends and family.

President Thomas S. Monson

Heart Month/Trisomy Month

February has ended and March has begun.  (I'm told it happens that way every year, who'da thunk?)

Anyway, the effort for education and advocacy continues.

Still, today, in this country, families are told that their babies with Trisomy 18 and 13 won't live, can't live.  And some can't.  But other babies without trisomy also sometimes don't live, for a variety of reasons.  And many, many babies with trisomy are living.  

Then parents are told told that IF their baby lives, it will be awful, horrible, painful, a terrible existence, worse than death.  And that breaks my heart.

So that brings me to my goal for March.  Let me show you what life is like with Aaron.  It's not awful, horrible, not usually painful, and certainly not a terrible existence.  I've said before that if quality of life is measured by how much joy you get from life, Aaron's figured out the secret.  He's got it made.  It's not all roses, but whose life is?

This week has been a good week, a really good week for him.  I'm told that often it takes several weeks for a heart to fully respond to a new medication, and I think we're finally seeing some really awesome results here.  He's used less oxygen and been more playful than we've seen in a very long time.

There is a glitch of course (isn't there always?)  Remember back to the beginning of February when I talked about the blood in the trach?  Well, that resolved fairly well and I thought we were done.  But then on Thursday, it came back.  And it wasn't in response to suctioning.  He was gagging and retching, and suddenly, there was a lot of blood in the trach again.  A couple of catheters full of fresh, frank blood.  No bueno, at all.

So tomorrow he's going in for (hopefully) a quick scope of his trachea.  The concern is that it sounds like the trach is wearing away at the inside of his trachea, and since there are arteries in the area, well, 'nough said.  We need to make sure.

But still, he is so, soooooo happy!!!  So we're going with that.

Day 26. Inspiration. When I can't find my way, when I need more than I've got, I look to God and the Temple and remember how much He has already given me. 

Day 27. Joy. If quality of life is measured by the joy you find in the journey, Aaron has the best life of anyone I know. 

Day 28. Love. What else can I say?

Day 1. Life is beautiful (just like his shirt says).

Day 2. Trisomy awareness. Sleepyhead is NOT a morning person. But if you want a late night party, he's your man! 

Day 3. Trisomy awareness. "Hope is being able to see that there is light despite all the darkness." Desmond Tutu

Day 4. Trisomy awareness. Busy Saturday for this kid. A trip to Costco and to soccer to cheer on one of his favorite players! 

Day 5. Trisomy awareness. Got my smiles on for church! Happy Sabbath everyone!

The fight for the right to life is not the cause of a special few, but the cause of every man, woman and child who cares not only about his or her own family, but the whole family of man.

Mildred Fay Jefferson

Two Weeks (Where Did the Time Go?)

Okay, so here's TWO weeks in review.

On the quick Aaron front, he's doing amazingly well at dodging the germs that seem to have taken up residence in our home, or at least in me.  And he's really good tempered about being more or less neglected by mom, too.  Big grins when he sees me, and plays quietly when I'm not in there.





This week saw a very successful science fair project (onto the state level, yea!!), Michael's Arrow of Light, and mama being diagnosed with pneumonia.

My view on Thursday, watching Aaron play
in his room while I rest in mine.

Yep, 'cause when you don't follow your own advice and slow down when you get the flu, you get blessed with pneumonia three weeks later.

I learned exactly how it is that Aaron can go from amazing to awful in six seconds flat (more or less).   I never made it quite back to 100%, but was pretty close, like 95% of all better.  Even Tuesday evening at the science fair, I only had a tickle in my throat.  By midnight, I knew I was in trouble, by 3 am I was beyond miserable.  So I dragged myself into the doctor on Wednesday.  Yep, fever (I really didn't know) and "significantly diminished lung sounds on both sides."  Thank heavens for antibiotics.  By Thursday I almost felt human again.  I'm really run down and have very little extra energy, but I can see the end in sight now.



So here's the last two weeks of instagram posts for heart month.  The video for today is especially cute.  Make sure you have the volume on, it makes a big difference.  😊  Oh, and just an FYI, pretty much all the pictures are from times past, not this week.  Kinda a mini trip down memory lane.

Day 13. Doctors. Aaron sees six doctors and two other specialists, and that doesn't begin to count all the residents and hospitalists that cares for him when he's in the hospital. Then there are the therapists he works with. And they all seem to love him! He's also been discharged from at least five other services (that I can remember). This kid needs his own social secretary. ☺

 Day 14. Nurses. Aaron needs skilled care. If I'm not with him, he has a nurse. He has nighttime nurses so I can sleep and school nurses to keep him safe at school. He rarely has an emergency, but when it happens, there's little to no warning. I'm the hospital, they are the doctor's eyes and at home or school, they're mine. They hold his life in their hands. 









Day 15. Change. Aaron has grown from a tiny 4 lb 15 oz baby to a chubby 45 lb first grader with a winning smile that charms everyone he meets.











Day 16. Fear. Fear lurked most of Aaron's first year. Only 5 to 10% of his peers celebrate a birthday on this earth. Now it's mostly shoved to the back of my mind, but still comes out when his sats drop, when he gets sick, when the doctors want to have "the talk". But I refuse to live with it.

Day 16. Courage. This is the face of courage. Always trying, never giving up, always moving forward.















Day 18. Hope. We were given our first glimpse of hope along with our Trisomy diagnosis. As the doctor and I spoke, I told her that somehow I felt that while his life might be shorter than we wanted, I felt it might be measured more in weeks and months, rather than hours and days. And she responded, "Somehow, so do I." 




Day 19. Scar. Aaron hasn't had heart surgery, but he has a similar scar from his g-tube surgery. Most have it though laparoscope, but when they tried, it wouldn't work. So they closed the initial sites and opened him up. A year or so later, I was trying to clean up the tape residue from a recent admit and some would NOT come off. After several minutes, I realized I was trying to scrub off his scar. It never did come off. 

Day 20. Grief/Loss. Grief takes so many forms. Loss of the life you thought you'd have. Loss of your dreams. And eventually the loss of your child. I grieve with so many friends, some bring me right to my knees in tears. I wear a butterfly always in remembrance of little ones called Home too soon.

Day 21. Family. What more can I say? It's crazy, but they're all mine and I love them. They've been on Aaron's journey from the start and they know how it will end, but that doesn't stop any of us. It may be hard, but that's only made us stronger.

 Day 22. Friends. A knock at the door, and three little neighbor girls were there. They'd been learning about The Comforter, and made a comforter for Aaron. I walked into his room later and found him playing Peek a Boo with it. These friends brought comfort to this mama's heart. 

Day 23. Future. "I got a future so bright I hafta wear shades!" We really don't know what his future will bring, but we will face it with hope and courage and fortitude. 

Day 24. Strength. Strongest person I know..

Day 25. Music. Aaron has always loved music. 

This is a couple years ago at a ballroom competition. This kid has moves! 

"Some memories are unforgettable, remaining ever vivid and heartwarming!"

Joseph B. Wirthlin