In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
But it was a good Christmas, very good. Ever since we moved here 14 years ago, our kids have had a slumber party in the basement on Christmas Eve. You know, all in one spot, easier for the big guy to sneak in and deliver presents, easier for the early birds to roust the night owls. But this year was going to be different. We don't "have a basement" anymore since the newlyweds moved in. But Deborah and Bronson decided they wanted to continue the tradition and invited their youngers to join them anyway.
The upshot of that is we could still hear the party in full swing when we finally made it to bed. No worries, Santa still came through even though I think some didn't sleep until almost dawn.
Aaron had a very good night, and a wonderful day. He was one of our sleepyheads, awake in the beginning but sleeping through a lot of the present opening. Santa hit it out of the ballpark with him. He opened a package of light-up maracas and has been making "music" ever since! Between that and a little handheld "computer" that Gramma and Grampa gave him, he's been making sure we know when he's awake!
Speaking of computers, we've been working with his school and speech therapist for over a year to try to get him a communication device. It's an eye gaze computer that will let him talk with us. And it's coming today!! Now Mama and Daddy need to figure out how to work it, too. But this will be such an incredibly important tool for him. He's been using one at school and apparently had a lot of success.
Except, he's my kid. You know, the kid that it really doesn't matter where the teacher puts them? They still find someone to talk to? Well, the report is that when they need him to pay attention, they have to remove the computer because that's all he wants to do, use it to express himself. I guess if I had to go eight-plus years without talking to someone, I wouldn't want to be silenced either!
All in all, a very good week. He's home, he's doing well. Sunday morning was rough, but since then he's done great. Smiles are even back, most of the time. (FYI: he becomes kinda sad when on steroids.)
He is back on the vent 24/7, and will be for quite some time if not from now on. We'll have to see how his lungs do in a couple months. Yeah, it will take that long for them to fully heal. We see cardiology today, trach/vent clinic (ENT, pulmo, special needs, nutrition, respiratory) early January, and neurology mid-January. Wonder what he'll have to say to all of them...
"Communication is something we all take for granted."
We did it, HE did it! We made it home yesterday, even in time to surprise Michael and pick him up from school.
So much to do, food, meds, laundry (okay, haven’t actually done that yet). I can’t find my room, but I did find my bed. Woke up this morning in my very own bed. Glorious!!
He’s not “all better” yet. He’s still struggling. We’re playing with vent settings because sometimes one works better, and other times, another. One lets him generally oxygenate better, but the other allows him to move the “junk” that’s still in his lungs and get it out. So we alternate.
He’s still on a lot of breathing treatments and is half-way through a course of steriods. Ah, yes, steroids. They do amazing things for his breathing. But they also make him sad. Sigh...
But still, home!!
It’s good.
“What is Christmas?
It is tenderness for the past, courage for the present, hope for the future.“
I didn’t realize it had been so long since I’d updated on our little Superman.
We’re still here, still hanging out, still on way too much oxygen.
Every day seems to go the same way. We’ve weaned the oxygen down to a manageable amount overnight, and the plan is to watch, try to keep him there, and go home in the morning.
But then the day happens, I guess you could say, “life happens.” He wakes up, plays, needs more and more (and sometimes more) oxygen. And we’re quickly back to where we’re maxed out on what the home vent can deliver, much more than we can deliver for any significant amount of time at home.
He’s finished his antibiotics. He’s pretty much “hanging out.” We’ve tried increasing his PEEP (the pressure that’s always in your lungs) to see if that helps. It really hasn’t done much at all.
Albuterol has helped, kinda, but last night we decided to up it to see if maybe it could do more than it was. He started getting it every three hours instead of every six, with the plan that if it did seem to improve, we’d consider steroids as well. If he’s not oxygenating because his lungs are reactive (asthma), steroids can also help. But the downside is that steroids decrease the body’s immune system, making it harder to fight off infection, and easier to get one. And that goes for both bacterial and viral infections. (Can I just put him in a bubble?)
Albuterol did seem to help, quite a bit overnight, so now we have orders for a five day course of steroids. IF he reacts the way he has in the past, we really might come home tomorrow. Pretty big “if.”
But as William keeps reminding me, we’ll just do what is best for him. We’ll give him the time he needs, be grateful for the time we have with him.
Last night I climbed in bed with him to sing him a bedtime song. Big mistake if I thought it would help him go to sleep. Instead, he took it as a sign that the party was just getting going! Funny kid. So we sang for about an hour. But as I sang the last line of “Edelwiess” I choked up. I have no doubt that this little boy will bless our home life forever. I hope we have many more days with him here on this side before he goes “home.” But I do know he’s ours, forever and ever and ever. And the lessons he teaches us will be with us just as long.
We’re still here, he’s still not the way he’s “supposed” to be.
But he’s getting there.
Yesterday he had come down far enough on his oxygen to try his home support settings. They worked, but he promptly went back up on his oxygen. We also started pulling all sorts of nasty stuff from his lungs. The thought is that with the higher settings, we weren’t able to mobilize it because his lungs were hyper-expanded. They didn’t have enough room to really collapse enough to be able to move that junk. But on the other hand, without the hyper-expansion, he wasn’t able to get good gas exchange. You know, good air (oxygen) in, bad air (CO2) out.
We didn’t make much progress on his oxygen yesterday, but today has been a bit better. He’s down to 65% right now, awake and playing. That’s a really good sign. Once he can be stable on 60%, we can try the home vent. Then it’s working our way down to what we can do at home.
I’m a little nervous that we haven’t had any setbacks at all, but I’m also hopeful. He’s now at day 6 of this whatever it is. Just because the viral panel was negative doesn’t mean there’s not a viral component. It means that it wasn’t one of the ones they can test for. But he’s also switched from IV antibiotics to a g-tube one. In fact, it’s the yummy pink stuff we used to take for ear infections and such. Too bad he doesn’t get to taste it.
So we’re still waiting. He’s playing, watching TV, being silly with the nurses. I don’t think we’ll be home this weekend, but I’m optimistically hoping for Monday. Maybe not. We’ll see. But we’re still 10 days out from Christmas. I’m confident we’ll be home before then. Until then, we’ll make the most of our time here.
You usually have to wait for that which is worth waiting for.
He’s happy again! He still needs a TON of support. We haven’t been able to reduce his oxygen or the additional supports on the vent. He’s still a pretty sick little guy based on numbers.
But his demeanor, yeah, our monkey is back. And it’s wonderful. He’s back to “helping” with diaper changes, suctioning, refusing to stay upright where it’s easier to breathe. He played pretty much all day, as opposed to yesterday where he just slept.
And I can’t say what a relief this is. On Thanksgiving I asked William if I was weird because every Thanksgiving I wonder if we get to have Christmas with him. They’re only a few weeks apart. But his first Thanksgiving I remember standing over his cradle and sobbing that I just wanted one Christmas. And we almost didn’t get it. He was crashing and Lifeflighted from the house the next morning in the very early hours.
Those thoughts ran rampant through my mind on Tuesday night. It was hard, scary. I wondered even into yesterday how things were going to play out. Were we going to get Christmas, only two weeks away?
But today, today is so different. He’s not better. He’s got a long ways to go. How long that takes is anybody’s guess. We’re almost 48 hours into antibiotics, and they may just “fix” everything quickly. It may take longer. His pulmonary hypertension could still kick higher.
But Aaron is back. And we’ll make it back home. And I have no words to express my gratitude for all the prayers and love and support that have been offered up on his and our family’s behalf.
Not even quite sure where to begin this. It’s all still processing, percolating, or maybe even just trying to avoid reality. But here goes:
Aaron was a little “off” Saturday afternoon and Sunday. Almost seemed more like tummy issues than anything. In fact, by Sunday afternoon, he was doing better. Totally fit into a “24 hour bug” kind of thing. Okay, whatever. He’s a kid, right?
Then Sunday during the night, he started struggling with his sats, and his heart rate went up, too. He had a low-grade, barely even there, fever. Asthma? Probably. The air quality is pretty nasty, although better in Alpine than down lower in the valley. But he stayed home from school on Monday, and I figured maybe Tuesday, too.
Monday night was worse, but still, not crazy. The nurse called me at 1 am because he was struggling so much, but we bagged him while also giving Albuterol and again, low grade fever. Most important, even though his vitals weren’t awesome, his demeaner was. I mean, this kid was a nut! It’s 1 am, the nurse and I are bagging, suctioning, giving albuterol, and he’s laughing at us, grabbing cords, and being oh so “helpful!”
Here’s the sad, ugly truth about family medical life: We schedule our emergencies. How twisted is that? But we do. Obviously, when it’s truly life-threatening, we drop everything and run, but we also learn how to manipulate the system (our kids?) and cram other things in, too. I had a work assignment, and they kinda frown on subs cancelling at the last minute, although they also would have totally understood. I had an appointment in the afternoon that I needed to keep if at all possible. But that said, I wasn’t sure either of those were possible.
When I went to the school, I let them know that things were pretty dicey at home. I appologized to each of my classes about keeping my cell phone on, and told them that I would only answer calls from my nurse or home. I checked in through the day via his camera. He was sick, we moved to giving him albuterol every hour, but still, he was (mostly) “okay.” In fact, his nurse sent me this video of him being “sick.” He’s being bagged, but seriously, does he look like he’s in trouble to you?
And my students were so sweet. I even had a couple come back later in the day to check and see if I was still there and ask how he was doing. But then Holli (his nurse) called as school got out. He was in the upper 60’s and not coming up well even on 15 liters being bagged. Michael and I ran (literally) to the car and raced home (five minutes away). I debated about whether to call her back and get the ambulance on the way. But when we got there, he was back in the mid 80’s, where he hangs out anyway, and he was moving back to the ventilator.
We watched him for a little bit, and I asked her what her gut was saying about things. She said he could probably hang on until I got back at 6 or 6:30.
Don’t get me wrong, I knew, knew, he was going to the hospital and going to the PICU. But you know, that whole “schedule the emergency thing...”
I did leave my bag packed, told her what needed to happen if he just wasn’t going to last, let Andrew and Michael know what kind of help she would need, you know...
Well, he did “okay” until we got back home, and then he was DONE! He dropped again into the mid-60’s and we had a hard time getting him into 70’s. I told William that this was going to be a fast “throw and go” when the paramedics got there. We weren’t going to be messing around. In fact, with him hanging in the lower 70’s, I worried that they might call for the chopper. He did manage to get to lower 80’s by the time they were there, but we still moved pretty quickly.
We got him loaded and took off, and he dropped again. And stayed down. Cranked the oxygen up, suctioned, started albuterol continuous. They hit the lights and sirens. And we worked him. We came in on 20 liters of oxygen, bagging, 28 puffs of albuterol one minute apart, and blue-purple lips. Sats in the mid 50’s to lower 60’s. Fever of 104.8. Yeah, almost 105 degrees. I don’t think I’ve ever seen my little boy quite this sick.
And here’s the thing: when someone comes in that sick, it’s a crowded room, lots of things going on, lots of people. And they work together really, really well, which scares me to death. I know for a lot of people that calm and smooth process is really good. But when various specialties work like that, it’s because they’ve practiced, because when it’s critical, they have to. Lives depend on them.
We had two IV teams. This kid who can take an hour plus to get an IV had two large ones running almost immediately, and one had a high-powered antibiotic going through it. The RT had him on a vent, off the vent and on an ICU bag, and we changed out his trach within minutes. The doctor, three nurses, two tech were all in there as well. X-ray was right outside the door. It was scary, terrifying, and heartbreaking.
The upshot of it all is that he came back negative for viruses (at least the ones they can test for) and positive for a right-sided pnuemonia, that we’re assuming is bacterial based on the negative viral panel. They’ve pulled blood to test for bacteria and the antibiotics he’s on will cover those if he’s got sick blood. Sepsis is a real concern, and it’s not something you ever want to play around with.
All in all, he’s a very sick little boy. On the positive side of things, he’s still on the ICU Trilogy (the ICU version of the vent we use at home). We’ve got lots of room to escalate things if we need to. The down side? He’s pretty much maxed out on it, he’s still pretty lethargic, and it’s going to get worse once he does wake up.
He’s not “helping” with any of his treatments. He’s leaving his cords alone. When he’s awake, all he wants is to go back to sleep. So he does. We’ll let him sleep as much as he wants to, and hopefully it is a healing sleep. It’s almost Christmas. Our bug needs to get better and come back home.
“Prayer is an act of love; words are not needed.
Even if sickness distracts from thoughts, all that is needed is the will to love.”
Ever have those times when you're on the hamster wheel, running as fast as you can, but feeling like you're keeping up okay? And then something happens....
Yeah.
It's been busy around here, but when hasn't it been? Aaron's doing well, as well as can be expected with weather changes and asthma and such, but you know. He's pretty good.
School, work, breathing treatments, meals (somehow the people in this house seem to want to eat, every day!) laundry, soccer (indoor), lessons. It's a lot, but okay. Busy is good.
And then something happened that threw the wheel into overdrive, and me going head over heels. It's not my story, so I can't share it. But it really threw me for a loop. You know the feeling.
You're running along, keeping up, but almost at the extent of what you have in you. And then with no warning, you're flying through the air, landing on the road, skidding along, and when you stop, you find yourself feeling all beat up, covered in road rash, wondering how on earth this all happened, and how to pick up the pieces.
And a car comes whizzing by and you barely roll out of the way, still shaking and trying to figure out how on earth to get yourself together again.
Yeah, it's all figurative, all in my head. But that's where I found myself yesterday. And all I wanted to do was crawl in bed, pull the covers up, and pretend that everything would just go away. But I can't do that. And it wouldn't help if I could. So I put on my big girl pants, got going, and got us over to the last choir practice before our performance tonight.
But I had Aaron with me (go figure, that kid still can't be left to take care of himself) and his wheelchair doesn't fit up on the stand where the choir is. So I sat in the first row and sang my parts from there. This little boy of mine reached for the music and gave me the sweetest smile. He waved his hand, with very small movements, in time with the music. And then we came to my favorite piece in the whole program: "Jesus Christ, the Apple Tree."
Funny, I was introduced to that song in 2009. The year I was pregnant and starting to get over morning sickness, and excited about this last special spirit that was coming to our home. I didn't have any idea yet of what lay ahead, just that we were going to be blessed again in the summer. When I found out in April that he definitely did have Trisomy 18, I told William that when he passed, I wanted to plant an apple tree, to remind me of the life and strength of Christ, who was the reason I was still able to get up in the morning and continue on.
So yesterday, as my soul was battered and worn, confused and hurt, almost at the very limits of what I could handle, the words touched me again, and frankly, I couldn't finish the song.
I'm weary with my former toil,
Here I will sit and rest a while:
Under the shadow I will be,
Of Jesus Christ, the apple tree.
This fruit doth make my soul to thrive,
It keeps my dying faith alive;
Which makes my soul in haste to be
With Jesus Christ, the apple tree.
And so I found the strength to continue, after spending time remembering Him. As I search His words, I find comfort, solace. He knows all about road rash and pain, about love and sorrow. He knows it all, and He upholds me. Without Him, I couldn't get back up, couldn't go on. But with Him, I can and I will. He is my Brother, my Savior, my Friend.
Okay, so I'm a couple days late. Forgive me.
