My Sweet Boy

Oh, my sweet boy.

It's been a week and a day since your heart stopped, and mine kept beating. 

I look at your bed with Scout in it and your toys still hanging, and sometimes I can almost see you, especially in the dusk of night, or early morning light. But it's still too quiet.

It feels like a strange no-man's land. We're in this break between holidays where there's no school and I was already planning to be off work. But work starts again Wednesday, and school the following Monday and I suspect things may hit hard again. We had our routine. This dance of you and me, Michael, the dogs, getting ready in the morning that was almost a waltz as we moved through the things that needed to happen. 

And now the music has changed. The steps have changed. I don't know this new dance, and I suspect I won't like it much.

Yesterday was your funeral. Honestly, I can't remember much of what I said. But Michael gave a beautiful life sketch and no one who was there will ever quite look at pie in the same way again. Matthew gave beautiful voice to what I hope were your thoughts, and Daddy taught powerfully. It was painful and healing at the same time.

Saying my final goodby and closing the casket on your earthly body was excruciating. I stroked your soft hair over and over in the hour before that time came, studied your face, trying to memorize the curl of your lashes, the tiny bump on your nose, the smirk that seemed to be hiding in the corner of your lips. 

And then we had to close the lid. I won't see you again in this life, except in my dreams. 

I miss you.

“The song is ended but the melody lingers on...” 

- Irving Berlin

My Brave Warrior

My little man.

We got to see you today, Daddy and I. 

Your hair is just as soft as before, your eyelashes just as long. Your skin is actually still the color I remember so well, except your lips which are pressed together with only a hint of a smile.

I miss your smile. 

I miss your goofiness.

I know it was your time, but I miss you.

Tonight I added up all of your hospital stays, and it was telling. You spent 529 nights over 84 admits in your 13 1/2 years. But 120 of those nights were in 2023. 

My brave, valiant warrior, you were tired. Your wonderful heart which as worked so hard for you was done. Flu may have finally taken you from us, but maybe it was a blessing to you. 

It still hurts. I still look for you. My breath caught as I saw you waiting for us to dress you. I hesitated to leave you up high on a table with no sides because I didn't want you to fall off. (Remember when you fell out of bed all those years ago and thought it was funny? And I didn't?) 

I went to the temple today, hoping for comfort. After I changed, I saw an old soccer mom friend that I haven't seen in way too long. She asked how I was doing and when I started crying, she just held me. When the session was done and I returned to the dressing room, another friend was there. She held me, too. I am so grateful they were both there today. Another tender mercy that lets me know He is watching over us now that you're gone. 

My baby, oh my beautiful boy. I hope you're happy. I hope you're running and jumping and playing all the games you watched your brothers play. It's your turn now. Be free. 

"A part of me is playing amongst the stars." 

- Sara Millen

I Miss You

This feels so strange.

Time moves too fast, but I feel like I'm slogging through molasses. Tomorrow Daddy and I will do hand molds and dress you one last time. This is by far the longest I've ever gone without seeing you, and there are only a couple more opportunities. I can't even wrap my head around that. I'm not ready to close that casket. I don't want this weekend to come.

The fact that you're gone really isn't ever far from my mind, but the muscle memory is something else. It got a bit busy right at dinner time and I went towards my bedroom to quickly do something and then as I was heading back to the kitchen, I started to veer to the left to check on you. It wasn't even a conscious thought, until I realized what I was doing. I find myself noticing the clock at 1 and 7 pm, right when you needed several meds and treatments, and my body starts to shift towards your room. 

Oh my baby, my heart hurts so bad. I know you're happy, you're free, you can run and play. There are no needles, no weak limbs, no low muscle tone to prevent you from talking, singing. You're perfect now. 

But you were pretty awesome the way you were before. 

It's a freedom I occasionally thought about, but knowing what it would take to achieve it, never wanted.  

You were ready. Even as I go through your pictures to prepare your slideshow, I can see it. It's in your eyes, and in your smile. Oh, your smile is still there, but it's tired, weary.  And now you're free. Fly high, my little one. Mama loves you more than you can ever know. 

"You'll always be with me, like a handprint upon my heart."

Stephen Schwartz

Going Through the Motions

I unpacked my suitcase today.

It's empty.

For the first time in over 13 years, I don't need it.

Oh, for a while there, I was tempted to do so as we went several months without going in, but it was my insurance, my security blanket. And now I don't need it.

It's been a busy day, which has been good, and hasn't, too. 

We met with the mortuary today. He could not have been kinder. He asked us to take the time figuring out what we wanted, and I muttered that what I wanted was to have spent Christmas in the PICU and come home with my child the day after or so, you know, like I thought would happen. It's not his fault, obviously, but really, that was probably one of the last places on earth I really wanted to be.

Yet at the same time, I feel like this is one last thing I can do for Aaron: try to ensure that his service reflects him and his life.

We found a plot at the cemetery. It looks out onto the mountains and is near a girl whose picture shows she had Downs Syndrome. It's beautiful. But I don't want him there, I want him here. 

I went and bought burial clothes and lost it in the store when I couldn't find the right size pants. They were on the other side of the (pretty small) circular rack. My sweet Michael was there and was so patient. I returned the special needs onesies that I got him for Christmas, unopened, unused, unneeded. Thankfully they didn't ask why I was returning them. I might have melted into a puddle on the floor. 

The rented equipment is gone. Most of the supplies will go tomorrow or over the next few days. His meds have been cleaned out.

Lone Peak Fire came by today with flowers, muffins and a card. My office sent a beautiful arrangement as well. We are being looked out for, but oh, my arms ache to hold him! I almost asked to see him at the funeral home, but feared that if I did, I wouldn't be able to leave. 

A Jewish friend prayed that "his memory will be for a blessing." This touches me so deeply. Aaron was, is, all about love, and he blessed our lives immensely. I pray that his memory will continue to bless us and those around him. Frankly, it's the only way I can see through this agony. 

"May his memory be for a blessing."

Deafening Silence

When I have a missionary gone for Christmas, I set up their bear overlooking the soft Nativity.  This year, I put Aaron's there.  William had already wrapped pretty much all of his presents, but the one from Santa showed up on Saturday afternoon. It was like a knife to my soul.  

I don't even know which way to turn right now. I'm slogging through mud and unable to move. And then I'm pulling out the stupid supplies that kept him alive that we don't need anymore and getting rid of them. And often I'm in between. 

It's so strange. I'm fine, and then a minute later I'm not. I cry until there are no tears left, and then somehow there are still more.

The silence in the house is deafening. I keep looking at the clock to check if I need to do cares or meds, and then realizing no, I don't. I tell someone that I'm leaving, or going to shower, or whatever and please listen... Oh wait, there's no one to listen for, and nothing to listen to. 

Deafening silence. 

This hurts so bad; I have never felt such profound pain. 

But it was his time, and I knew it. I think I knew throughout the whole admission. It was different, I was different. We've come so close so many times, but I "knew" he was coming back. This time I felt things, I was more disturbed, upset, something? I broke down a few times. 

He had gotten tired over the past few months, last couple years. He still enjoyed life. He still smiled. But at the same time, he wasn't joking as much, wasn't playing as hard. We didn't have much laughter, although the smiles were still wonderful. 

So many people have reached out.  So. Many. People.

I have read every comment, every post. Each one has touched me and strengthened me, even while they also make me cry.

We are not alone.

Friends started coming Saturday morning as word got out. Yesterday both before and after church I was surrounded by love and embraces. Last night, about 7, someone knocked on the door. When we went to the door, there was a crowd on the lawn with candles. A violin started playing and they quiety sang, "Silent Night." I don't know how many people want to go out in the freezing cold and stand and sing to a grieving family.  It was so cold out, and it warmed my heart more than I can say. 

It's the little things. The facebook and instagram messages, the emails and texts, even though I haven't responded to very many at all; I read them all, over and over, even though I haven't responded to very many. The connections make breathing possible.

Several years ago a friend lost her girls in an auto accident. She told me that after four years, it didn't hurt every time she took a breath. I couldn't imagine. Now I don't have to. It is a physical pain.

He is Home. He is free.

But oh, I miss him. 

I keep playing various scenes over and over. 

When things went down on the 13th, there was divine intervention that I didn't even recognize until a few days later. When drawing labs that morning, I asked them to put in another line if they got a vein. It was a weird request. We had one IV and it wasn't being used at all, but somehow I felt a second line was a good idea. So they did. 

I wasn't supposed to get off work until 6, getting back to the hospital about 7:15 or so, but a schedule was changed, I got off at 5, and was back just after 6:15. 

At 6:30 things got ugly, but I was there, I wasn't with a client, and we had two good access points which was critical.  And he made it through that night.

But even though he started making improvements, was moving the right direction, I was still uneasy. I broke down a few times, once on my way back from dinner so I stopped in the meditation room where I took some time to face my fears and verbalize them.  I was trying to deny what was coming, but I think I knew anyway.  It was Monday evening.

Sometime, probably soon, I'll detail what all happened. But tonight, my head and heart hurt too much. Just know that it was definitely his time. The team did everything we could have asked for, and it was so peaceful. Meds that should have allowed a rock to have a heartbeat did absolutely nothing. 

His giant (it really was too big) wonderful heart was done. It was like watching a feather float to earth, or a golden ball roll to a stop. His wings were ready, my heart was not. 

“I will not say: do not weep; for not all tears are an evil.” 

J.R.R. Tolkien, The Return of the King

Someday Was Never Actually Supposed to Happen

Oh, my baby.

My sweet, sweet baby.

Someday was never supposed to come.

Your heart, your big, not-so-strong heart yet beautiful heart, it just couldn't take it anymore.

I don't know how to do this.

At 12:20 this morning your wings were ready. My heart was not.

Someday was never actually supposed to happen. 

Not a Lot to Report

Not a lot to say.

He's still in the PICU, still somewhat sedated, still on pretty high vent settings.

BUT, he's still in the PICU, still somewhat sedated, still on pretty high vent settings.

There are much worse alternatives, and we were almost living them. 

It's five days until Christmas, and it's looking more and more like we'll have it here. 

He has been weaning on his sedatives, but that comes with it's own set of challenges. It's been medically necessary (absolutely!) but he's been on drugs that have calmed his brain and forced his metabolic system to slow down. Stopping those can be rough, but we're hoping to be off of one tomorrow, and then we can work on the other, which is already at a pretty low dose. 

He's still on higher vent settings than we can go home on, and he hasn't made any progress on his nitric. We have to wean his oxygen before we can tackle that one. This virus is hard!! It's definitely done damage.

He is completely (and fingers crossed it stays that way) off his blood pressure meds. No, not the kind that keep your pressures lower; the ones that keep the blood high enough to move around the body. I mean, it's kinda hard to oxygenate cells if no oxygen is moving to where they are. 

We got rid of one of the banks of IV pumps and the "brain" that goes with it.  He is still fevering from time to time but it's low grade and (I think) less often. 

Overall, we're moving the right direction.  It's going to take "tincture of time." For an inpatient mama, that's kinda hard.

Yet, over the years, my window of tolerance for what I can handle has grown. It's had to. It's been stretched and sometimes pummeled. I've watched as traumas have been brought in by Lifeflight. I've heard the codes being called overhead. There are those for whom this is completely and totally outside anything they've dealt with, ever. And they'll be spending Christmas here, too. 

My heart goes out to them. Yes, I'd much rather be at home. I miss the Christmas lights and baking. I miss spending time with my grown kids who will be gathering and hanging out. But we've done this before. It doesn't make it easy, but it is bearable. Because there is another reality which is much harder, more unbearable.

So I'm grateful for what we have. 

“Christmas is not a story of hope. It is hope.” 

- Craig D. Lounsbrough

Small, But Significant Improvements

Doctor said flu A kills healthy people.

Aaron isn't healthy.

I really didn't mean to leave people hanging, but, well, I just didn't.

He is doing better.

He has a LOOOOONG ways to go. 

Thursday, he finally stabilized on 100% FiO2, nitric oxide of 20ppm, ventilator support of 28 breaths per minute, pressure support of 15 and PEEP of 15. Normal for him is 14 breaths per minute, pressure of 11 and PEEP of 10, for most people it's pressure and PEEP of roughly 5. In addition, he was on three sedatives at fairly high amounts as well as pressors to keep his blood pressure up and no food. He has been laying on a cooling blanket to keep his temps down, and had three different antibiotics because we do not want to take the chance that a bacterial infection is also playing into things. 

He has two IV lines with multiple hubs, a PICC line, an arterial line, and a temp probe. 

And there's probably other things that I'm just forgetting. 

It's a LOT.

BUT today his vent support is at 65% FiO2, PS of 13 and PEEP of 13. We're turning down the sedatives and pressors. He's getting food and although it's slow, it's the full amount over 24 hours. His temp is (mostly) normal.

I have no idea how long we'll be here. We certainly won't be going home this weekend. 

But we should get home sometime. Wednesday night, I didn't know if that would happen. 

Miracles are not contrary to nature, but only contrary to what we know about nature.

Saint Augustine

We Made it Through the Night

He made it through the night.

Even sorta stable-ish. 

If you've got medical trauma, please stop reading. It's not worth the PTSD. 

The room we were in until last night.

********************************************************************

I guess I'm naive. I mean, it's the flu, the plague, influenza A. I remember reading something my grandma wrote one time describing how she felt when she had it: "I felt like I was going to die and was afraid I wouldn't."

Somehow I was hopeful that having gotten here relatively early in the process and on antivirals would mean that it would be fairly straightforward and not that big of a deal.

I was so, so, so wrong.

I'm not going to detail everything that went down last night. I actually can't. It happened so fast, but it was Ugly. Yes, with a capital U. 

Background: he's been on 100% FiO2 just to maintain his sats the whole time we've been here. That's not a great sign. We needed to (and should have been able to) wean his oxygen after the first couple days at least. His temps have trended down and have even been normal the majority of the time. But he became less interactive over the past two days.

His CBC showed his hematocrit and hemoglobin (and red blood cells and platelets) were trending down a bit. That happens when he gets sick and he needs (another) transfusion to keep enough box cars on the train to move his oxygen around. So yesterday before work, I signed a consent for blood. 

And then as I got back from work, everything went to hell in a hand basket. Really.

He started coughing and coughing and coughing. He also pooped, which didn't help his hemodynamics but probably helped his tummy.

But the sats dropped, and dropped some more. He had two pulse/ox probes on to monitor his pulmonary hypertension. For him, a typical split is somewhere between 5 and 10 points. We're not as concerned about the lower number because the upper number is the oxygen getting to the brain, heart and lungs. His digestive system, kidneys, etc do take a hit from the lower number, but not quite as critical. 

We saw upper sats into the 40's, and lower into the teens. Even when we got his upper sats into the upper 60's, his lowers stayed in the teens. His heart was in a lot of trouble. 

I honestly thought we might lose him.  

The team was amazing. They worked quickly. He was sedated, chest x-rayed (that was also ugly), pushed meds, sedated him heavily, put in an arterial line, turned nitric up, and moved us from overflow to the center of the unit. 

He didn't need paralytics. This morning the split between his two numbers is nine. Just nine. He's doing better. I'm taking my victories where I can find them.

And my dream of a quick easy path forward is well and truly gone. But he's still here, still breathing.

 And funny note, when he was tanking last night, spiraling down, he looked at the RT that took over bagging and smiled big at her, almost started laughing. My bug...

"Recovery is about progression, not perfection."

Unknown

The Plague Take 2 (on Plague #1?)

So the last almost four years, Covid has been front and center in in my brain on the list of things we needed to avoid. I'm grateful he didn't get it until there were vaccines to blunt the response, home tests to identify it rapidly, and medications to mitigate it. Frankly, that sequence probably saved his life. When he got it in September, he was miserable: tired, achy, and sleepy, but he handled it at home.

But this weekend, the one I've been worried about his whole life showed up (again). Almost ten years ago he came down with the flu. He did okay with that one with the help of an awesome ped that called in Tamiflu for him. 

But he's older now; his heart and lungs are sicker. And yep, it's here again.

He kinda battled some kind of respiratory "stuff" the week after we came home from the hospital, but other than increased breathing treatments and a bit more suctioning, he did okay. By mid-week this past week, we were seeing smiles, goofiness, and all around awesome things (although still a few more respiratory treatments). 

Then Saturday...

I was woke by a phone call from my nurse. His heart rate was pretty high. How high? I was thinking maybe 110-120's, probably the result of his albuterol treatment he'd just gotten. Uh, 139. Yeah, a bit higher than I was thinking. I told him I'd be right out and asked if he'd taken his temp. No, he hadn't, and yep, it was high. 40° (104°). Kinda up there...

We started Motrin, piggybacked Tylenol.  His temp went down and up throughout the day. I saw 39.2° but mostly he was 39.5-39.8°, with both meds on board. His oxygen needs fluctuated, but mostly trended upwards. He did have some "stuff" in his nose and trach, but not much; nothing like what we see with rhinovirus (which we haven't seen for a few years and that's just fine!). By early evening, I was putting him on the big tank at 12 and 15 liters, but he was breathing so fast (due to the fever), it was hard to get the FiO2 up very high at all. Usually, when he's breathing normally, eight liters is pretty close to 100% FiO2. Instead, even at 15 liters, he was capping out at about 75%. 

I struggled with taking him in though because he was actually acting pretty okay! I mean, yeah, he was sick. He was tired and less enthusiastic. But he was still playing with toys, listening to Dad read Harry Potter and mostly being himself. It was just those darn fevers. 

And then the oxygen.

Because by the time we were done with dinner, he was maxed out on the oxygen I could provide and still struggling to stay up. We tried bagging him, which worked, but only when squeezing the bag. 

In the end, about 10-ish, I gave up and we called our local heroes. 

And up here? Well, everything looked pretty good. He'd had labs done on Tuesday to make sure he was still in an okay spot after discharging two+ weeks earlier. Those had a couple bumps on them, especially in the white blood count, but the ones up here looked better. We'd moved his spleen ultrasound based on Tuesday's labs and that hadn't changed.

But then his viral panel came back. 

Influenza A

So here we are. 

In the PICU.

But he's nowhere near the sickest kiddo here. He just needs a lot of oxygen. They're giving Tamiflu. And today is day two. The first three days are supposed to be the roughest so I'm hoping that by Tuesday we see improvement. 

Overall, given everything going on, he really does look okay. He squirms down and to the side in his bed. We can't keep him upright. That's a good sign. He is sick and he looks sick, like anyone else with a high fever would look. But I'm hopeful that with Tamiflu on board and the supports he's getting this stay won't be terribly long. 

Fingers crossed... 

"The difference between perseverance and obstinacy is that one comes from a strong will, 

and the other from a strong won't."

Henry Ward Beecher

Be Gentle, Pushing Too Hard Is Rough

So we're home. (How did I not put that up?) He came home two weeks ago today. 

Then we had Thanksgiving week. And the day after where we put up Christmas. 

So essentially I had six weeks of illness and/or hospital stays. The first one was 13 days and we were on the floor the whole time. The second was only 25 hours later, admit by ambulance, land in the PICU where the doctor recommends I don't leave the hospital for a few days as we watch how things play out. Yeah, he was that sick. 

After about five days, we thought we were on the right track and started talking about being on the floor for another week-plus, or going home with a PICC line. We opted for the floor initially to make sure he was stable. Good choice by the way. We went to the floor on Sunday . . . and back to the PICU on Wednesday where things got rough again. It took 11 more days before he was stable enough to come home.

During this time, I also kept working (except those two really hard days). And we had state football playoffs. And while on the floor, I slept on a somewhat uncomfortable couch, but in the PICU it was a "reclining chair bed." Those quotation marks are important. It was a stretch to call it a bed, yet that's where I slept, because I already felt bad about being away during the day. Needless to say, there wasn't any great, restorative sleep during that whole time. 

We came home and it was Thanksgiving time/Christmas decorating time, and while I didn't do as much as most years, it was still important to me to do it. And I think important to the family. Too many things have been put on hold over time. 

So then what happened?

Yeah, my body and mind decided to assert itself and say ENOUGH!!

I hardly was able to get out of bed last Saturday, and Sunday was also rough. Migraines, stomach issues, just all over body aches and serious brain fog. But Sunday I got to go to church. I think I've only been in my home meetings a handful of times since mid-August. A very small handful. 

I sat there and the opening hymn was "I Know That My Redeemer Lives."  Part of the second verse sings:

He lives to comfort me when faint.

He lives to hear my soul's complaint. 

He lives to silence all my fears. 

He lives to wipe away my tears. 

He lives to calm my troubled heart. 

He lives all blessings to impart.  

I tried to keep singing, but after "silence all my fears," I couldn't. I sat there, alone (because William was home with Aaron and Michael was at the sacrament table), and cried. And a sweet, dear friend, who was on the stand because she was speaking that day, stood up, came down, and held me. She just held me while I cried. 

I was hurting, and I was rejoicing. He does live! And because He lives, we all will again too. But between now and then, we will go through some awful, really hard times, which will include saying goodby to Aaron. And that hurts. And I had been pushing so hard, for so long, and my body and emotions were just done. 

But she held me. And she stayed by my side until the sacrament was over and Michael came. And then she sat with me again during our second hour meeting and put two bracelets that she'd made on my wrist.

In the Bible, we read that in Gethsemane, an angel came to strengthen Christ. Today someone mentioned that they weren't quite sure what kind of strengthening that might have been. For the atonement to be effective, Christ had to hold all our sins and all our pains, all of everything. But it occurred to me that perhaps in just being there, being present, the angel strengthened Him and made it possible for Him to continue. She was my angel, sent to me when I needed her. 

Friends, this is hard! Aaron continues to have his ups and downs. He fevers and then doesn't. His digestive system works and then goes on strike. He smiles and laughs, and then will sleep almost around the clock. He's 13, thirteen!! There aren't very many boys with full T18 older than him. But he's not the only one, and I'm not the only one affected. He is a younger brother, a son, a brother-in-law and an uncle, a grandson, nephew, cousin and so on. He's a friend. He's my inspiration. He has a mission here on earth and I know he will be here until it's done. 

And it will hurt. And we will have those who minister to us, who hold us up and just hold us. I'm so grateful for the support and help. 

In the meantime, I'm slowing down. I'm trying to listen to my body and decide that while some things are important, others are not so important. I'm trying to just "be." If you're pushing too much, too hard, if things need to be "done" or "perfect" or whatever, take a minute. Decide if it really is that important. Maybe it is, but maybe it isn't. 

Be gentle with yourself. 

“Gentleness is very rarely taught, especially in regards to being gentle with ourselves.” 

~ Camille Grady