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

 

U-Turn (or Back and Forth)

I'm going to try to get the details (that we know anyway) down here. 

Infectious Disease decided to put Zosyn back on board due to the infection on his spleen.  

And then we did a CT scan of his abdomen which was negative, and his white blood count dropped, and his fever went away.

So they took Zosyn back off. 

The ultrasound is more sensitive but since he's not showing clinical signs of infection, AND he's been on two weeks of high dose Zosyn, plus another week with a five day gap, plus he's still on Bactrim. I mean, bugs that are going to survive all that....  Well, we know there are some but hopefully not these.  

So now (meaning currently but it could change) the plan is to finish his Bactrim on Saturday, watch him for about 48 hours, and if everything looks good, we'll head home.

But that assumes no fever, and that he gets back onto his home vent, and that we get his sodium levels back up into a normal range (because of course, why wouldn't they be wonky?).

However, he is back to his home sick vent settings and is off the nitric. We're working on weaning his oxygen, and I'm hoping to wean one of his heart meds although that won't keep us here. All in all, I think we've got a better than average chance of being home by Thanksgiving. Actually hoping for Tuesday. 

It's time. He's been here a month today, minus that 25 hour field trip that ended with the ambulance ride.

Fingers crossed.  

Home for the holidays...

"Life is not something we can manage or control. 

It's something we negotiate every time the path takes a turn." 

- Lisa Tawn Bergren

They See Him

I'm afraid I'm losing track of everything that's going on, but at least we're moving in the right direction now.  

He did end up on nitric oxide Sunday but weaned off his sedatives pretty quickly.  He couldn't continue getting his heart med every two hours (and he started demanding it every hour!) so nitric it was.  He also needed that second dose of TXA Sunday afternoon, but the bleeding wasn't quite as bad, maybe because we had the med bedside instead of having to request it from pharmacy.  

On the plus side of things, we did another bronchoscopy today and it looked really good! It was back to pink and not swollen, and when he coughed there was a little mucus but no blood, and no color to the mucus (TMI?).  He's also been playing today.

All really good things. 

His fever curve has gone up (and up and up). At one point he was 40.2 (104.4) but we're trying to keep him comfortable with Tylenol, Motrin, and ice packs. (I don't think I would be "comfortable" with ice packs. Makes me cold just thinking about it.)

Anyway, the thought had been that perhaps the fevers were antibiotic induced so we stopped those on Monday. He only had one more dose due anyway. (Remember, my plan was to take him home on Monday after finishing the antibiotics.) But that little three letter word: had...  

Moving rooms. This kid doesn't travel light.

Yeah. Infectious disease is now involved because we just haven't been able to figure things out, and they want a bunch of other tests. Most are very unlikely: mumps, Epstein-Barr virus (both negative), and some others. They also wanted an abdominal ultrasound. Basically, trying to rule out everything. I mean, their job is to look for the weird, uncommon issues that most people don't think of.  

And that abdominal ultrasound? 

1. Multiple echogenic foci within the spleen can be seen with developing microabscesses given concern for occult infection.

Yep, sick spleen. Several pockets of infection. But they're small, and it's better to try to heal the spleen if possible than to do without a spleen. And much better for Aaron to not have to have surgery. 

So the long and short of things (as they stand tonight) is that we're going to be here for a while longer. He's going to need more IV antibiotics and I don't know for how long. We don't even really know how long this has been going on. It's possible this is why he's struggled so much lately. They're also going to do another specialized blood test where they send it to a lab (in California?) that will remove all human DNA and see what's left, just to make sure he doesn't have a micro infection in his blood that might be a factor. 

It is what it is.  I'm grateful for a team that takes such good care of him, that keeps digging, that sees him, not his diagnosis or handicaps. 

And now, I'm going to bed, because I still have to go to work tomorrow. Just like I count on people here, I have people counting on me. It's good to be needed. 

“I’m not a superhero because I parent a child with special needs...

I’m the sidekick to my superhero.” 

– A. Krause Studio

Wrong Direction

He's on a lot of support, but he's stable (with the supports). He's currently on Precedex for sedation (but not Ativan) and the hospital vent with higher settings.  He didn't need nitric oxide, although we're giving his heart meds every two hours (it's usually every six).  After a couple hours, at 100% oxygen, he brought his sats back into his normal range, and over the course of the night, he weaned to 50% oxygen and a little down on his sedative. We haven't had any more bleeding. This part is HUGE! He is fevering, again.

I've never seen blood like that from him. In the past, if he bled, it quickly decreased and would often have clots. This didn't. It increased. Every time he coughed, he'd cough up more than the time before, and there were no clots. All frank fresh blood. 

We didn't suction outside of the trach. No way we wanted to increase any of this, so we only suctioned out what he brought up on his own. 

He'd had a bronchoscopy earlier which was not pretty. We couldn't see active bleeding, but that tissue was angry and red and swollen. And then then the bleeding started. His sats kept dropping. I know I saw 47%. I seriously thought he might code. 

He's getting some steroid drops into his trach to help calm it and the doctor used a somewhat new treatment to try to stop the bleeding. Tranexamic Acid (TXA)  has been used to control bleeding for years, but using as an inhaled treatment isn't that common. But since that's where the bleeding was, and we needed quick control, we tried it.

And it worked. 

So grateful.

Tuesday was a bit rough. In fact, that night I slept in my clothes expecting that we'd end up in the PICU again because we were on 15 liters of oxygen, which understandably makes the floor nervous. I mean, that's as much as they can deliver. There is no wiggle room.  

He did transfer down to the PICU Wednesday morning. And looked great. (Crazy kid.) There was talk of returning to the floor. He needed more oxygen again. Goal and plan was still for home Monday evening after finishing the IV antibiotics. So maybe we'll go to the PICU overflow. That was yesterday morning but didn't quite get arranged. And then yesterday evening...

Good thing we didn't go. What was challenging here would have been doubly difficult there. And we would have come back. Today's plan is to try to wean some of those supports. We're turning down his sedatives and spacing out his heart treatments.  If that works, we'll reduce his vent settings.  

And I have no idea when we'll get home. 

"Even miracles take a little time."

- Fairy Godmother, Cinderella

13 Years of Trach and Joy

Thirteen years ago I sat in the PICU by my baby. 

He was intubated, having failed (spectacularly) his extubation following his g-tube/nissen surgery and was on the schedule for a trach the next day. 

November 8, 2010 was the first time I saw my baby's face without any tubes or wires (except for the few minutes when he was supposed to have them but had pulled them off). 

I was scared, terrified might be a better word. I mean, it was his airway, his very breath of life. 

And it was the gateway to a whole new world. A world where he laughed for the first time. He grew, he played, he thrived. 

Today, I'm sitting in the same hospital but on the floor. He's sick. We think he's doing better. I mean, he did make it to his home vent Saturday evening and to the floor on Sunday. But in spite of workup after workup, antibiotics that should kill anything!, and still on higher doses of his heart and rescue meds, he is struggling once again.  

The night before trach surgery

He's still running fevers daily. This afternoon he has needed more oxygen, more heart meds, and he's tired. There's talk of returning to the PICU. Yes, again. 

Thirteen years ago, I sat as someone told me they thought I might be going too far. Taking care of a child with a trach and a vent would be too hard, too hard on me, on my marriage, on our children. Did I really want to go down this path? Did I understand what I was taking on? Did I realize that in adding interventions, it would be that much harder to take them away. 

Playing after trach surgery

Yes, I wanted to do it. (I mean, the only alternative was letting him go.) No, I had no clue (and knew I didn't) what I was taking on, but I hadn't shied away from hard things in the past. And sorta, in the back of my mind, intellectually, I knew that once we added an intervention it would be harder to take it away. But I also knew that I was sending a message, especially to my other children: Mom will find a way to handle it. There isn't anything that you will do or go through or whatever that will make Mom give up on you. 

We've learned so much over the past 13 years, but mostly, we've learned love. 

So while I don't know where this is going, I have faith that it will work out, one way or another. Strength is needed and will be given. 

Thirteen years. For a kiddo who outlived his life expectancy 4881 days ago, that's pretty awesome. 

And he's taught us to find joy in the journey. 

“The joy is in the journey, the struggle is part of the joy 

and the final destination is not an end but another beginning of another journey.”

― Kathy Boyd Fellure

Long Road and Baby Steps

Up in his wheelchair today.
Lungs work better when we move
around so this helps him.

He's making progress.

We turned off the nitric oxide yesterday and tonight we're hoping to make the jump to the home vent. 

He's still a ways from being stable enough to come home, but tolerating the home vent will give us a really good idea of where he is exactly.

So how did we get here? 

He did much better on the nitric and PICU vent, but then started having higher fevers and looking a lot more miserable.  Once his trach cultures grew out, we realized why. He didn't have just one bad boy in there, not two, but three!!  (Pseudomonas, Stenotrophomonas, and Klebsiella: try saying that fast!) And different antibiotics are needed for two, 'cause it would be too easy to have one kill everything, right? 

So he's on an oral (okay, g-tube) antibiotic, which is great 'cause we can do that at home. I mean, it's not like he doesn't already have dozens of doses of meds each day.  (I mean, seriously, he really does!) But the other is an IV only med, and he needs a 14 day course of it. 

Putting in a PICC line would mean we could do those at home, too, but this kid has some interesting vein anatomy on his left side which means we only have the right side of his body to work with. Too many PICC lines runs the risk of damaging the vein, and like running out of options for antibiotics, losing that option isn't good either. 

So the plan is to see how long it takes him to get to where he is stable enough to go home, and then decide if we want to do a PICC and go home, or just finish out here.  I think the (sorta arbitrary) marker I put was about five days out. If he's got five or more days of antibiotics left, we'll do the PICC and go home. But if it's less than five days, we'll probably just stay and finish here. Why five days? It just seemed like a good number.  He's currently about five days into them, so we've got about another ten days to go (I think). 

Our cute Piglet (before he got sick)

But the long and short of things is that we didn't treat it well enough before. We certainly tamped it down and he did get "better" but not "all better." And the five day gap we had between when we finished the first week and when we came back allowed it to resurface with a vengeance.

So when the doc tells you to take all your antibiotics even if you're feeling better, do it!! 

Sigh...  

Anyway, in our church, on the first Sunday of the month, we participate in a fast day. (The link can give more information.) We petition heaven for blessings and try to draw closer to God, wanting to understand His will in our lives. Tomorrow, we're fasting specifically for Aaron in our family. We are asking God to help him recover completely and be comforted in the process. It's going to take some time, so the comfort part is pretty important to us.  We would love to have anyone join us who would like to participate. You don't have to be members of our faith, or even Christian. We covet the prayers of any and all. 

I know they are real, and they are answered. I have felt their strength before as I have been given the ability to stand by Aaron's side and do things I didn't think I could bear to do. I am so grateful for the faith and good wishes of so many who combine to help him and, by extension, the rest of us. I don't have words to tell you how much they mean. 

“We’ll be friends forever, won’t we, Pooh?” asked Piglet. “Even longer,” Pooh answered.

- A. A. Milne

Halloween in the PCIU (Kinda Scary)

He's better. Not ALL better, but still better.

There are still steps before he can come home and they'll probably take time, but he's on the right path.

And if you've got medical trauma or PTSD, please stop reading now. I've got a lot to unpack here.

When I first brought him in just over two weeks ago, this is what I was trying to avoid. Or what this almost was, or something...

I could see what I thought was probably a tracheitis setting in and we had nothing at home that would help keep it at bay since he's resistant to tobramycin. So we came in, and we thought (sorta) that it had been treated. But in the back of my mind was this niggling voice that said, "pulmonology said that if he got an infection, our only option was two weeks of IV antibiotics." TWO, not one. But I didn't speak up. I don't always do that even though I know I should. And we all know now that it wasn't Anxiety talking to me, although she does have plenty to say. 

We're not completely sure that's what it was/is, but that's because this kid has so many different things that can/do go on it's hard to pin down just one. 

Yesterday was hard. He was on 100% oxygen on an ICU vent. The vent was a step below what he usually ends up on but much more powerful than our regular one. We still struggled, even with higher support settings. He didn't want to come up even to the mid 70's on his sats.  His blood pressures were low so they started him on norepinephrine. 

I had visions of following the path we were on back in June, just before his birthday. It was not good. 

And the doctor suggested I not leave the hospital for at least the next couple of days. 

That is NOT a good sign.  

My Mandalorian, the strongest,
bravest guy I know. 

Later last night we switched him over to the more sensitive ICU vent and this morning we added in inhaled nitric oxide (INO) and then gave blood. For some reason, his red blood cells have really struggled the last few months.  And he's fevering.

And we're seeing good things. He spent a couple hours up in his wheelchair (which is good for his lungs.) His oxygen has weaned from 100% to 50% and his INO from 20ppm to 5ppm. We're going to hang out there for a bit without making changes. He's satting in the low 80's, which is just fine for him. They've stopped the norepi. He's still on IV antibiotics and we should know more about exactly which ones he needs soon. 

He's doing better. Between the blood and antibiotics, I'm hopeful that we'll continue the upward trajectory.  I'm hoping we're going to avoid full-blown sepsis. 

They're running labs on his blood levels, hoping we can figure out why he's needing so many transfusions. It's likely that he'll need to start getting weekly subcutaneous injections, but they'll teach me how to do them so we don't have to come in. I'm a little nervous, but hey, we already do g-tubes and traches and a bazillion meds, so one more? Why not? (I guess.)

I'm hoping we're done with the tricks and on to the treats. 

"I'm not leaving my fate up to chance."

The Mandalorian

Happy Halloween??

Apparently it wasn't anxiety talking. (Or maybe it was and she was right.) 

We made it 25 hours.

Sunday was good, really. But about 2 am on Monday he needed more so I gave him a breathing treatment and turned up his oxygen.

And at 4 am.

And at 6 am when it was time for his regular breathing treatment and vest anyway.  It was scheduled for then, but he was also needing it. 

He was supposed to go to school, but at the last minute, we decided against it. Good thing.

We tried everything to keep this kid home. 

I ended up having to cancel my last appointments for the day and headed home.  We discussed ambulance vs bringing him up but that would have still meant we needed at least two of us because he was not tolerating being on his ventilator.  Looking at the time, we opted for the ambulance.

And then because he was pretty tenuous, they opted for the lights and sirens. 

Sigh...

It's a little frustrating. By the time we got upstairs (and it was really only a few hours, less than 4 from when we walked in the door) the specimen that was pulled from the trach was already growing out garbage. 

We didn't fully treat the tracheitis. Oh, we thought we had, but there was this niggling doubt in the back of my mind. I didn't have a reason. His white blood count had trended steadily down into the normal range. He wasn't quite a stable as he usually is. But here we are again.

Got home about 4 on Sunday. Called the ambulance at 5 on Monday. 25 hours. 

And now we're in the PICU on a hospital vent because he can't tolerate the regular one.  He isn't tolerating his vest treatment.  He's not being fed at the moment because digesting food also takes oxygen and energy and so I stopped that yesterday afternoon as well. And he's tired. 

So I guess it's tricks for him instead of treats. 

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

I'm sitting here trying (sorta) to not feel put upon and sorry for myself and looking for a quote ('cause you know I always have to have one.) Staff comes to round and just as the doctor speaks, the code tones sound. They're gone, and I pray for the child, the family, the staff. And somehow my problems don't seem quite so big or important.

It's no coincidence that four of the six letters in health are "heal." 

~Terri Guillemets

Coming and Going (But Mostly Going!)

UPDATE: We are packing up and heading out as soon as we can get meds taken care of. 😊 In the back of my mind, I do wonder if he's truly ready, but I think that's anxiety talking. If I listened to her, we'd never leave. 

We had visitors yesterday! 

It was a rough game for the "good guys." Both sets of our "good guys." Both BYU and the U of U lost pretty badly, but the U's game was right here so afterwards, Mary, Michael, and Livi came to say "hi." It was fun to see them and chat for a little bit, and I think it did Aaron good to see faces besides mine.  Plus it gave them a chance to warm up. (It's cold out there!)

But Aaron? Where are we? 

Well, we're still on the floor. Yesterday I wondered if we'd stay here.  He had an issue during the afternoon where he ended up on 15 liters and then had to be bagged, and even then wasn't really interested in coming back up. The doctor came and we gave an emergency dose of his heart med (which he really loves!) and things settled out. 

In fact, they "settled out" so well that instead of mid to high 60's on 15 liters, he was high 80's to low 90's on 6. Serious change!

And the rest of the day went just fine. This morning we pulled labs again and his white blood count is down further. It's actually back in the normal range again! It turns out (don't know why I didn't think to look at this before) that pulmonary hypertension can influence white blood counts. I mean, the WBC is mostly a stress or inflammatory marker so it makes sense. And we know that when he's getting over a virus or infection his PH spikes. 

I think we've worked it out, although we're not sure what "it" was exactly.  I mean, he grew out "stuff" from his trach and he did get better with the antibiotics, but there's still the question of what exactly it was. We have (yet another) game plan for him.  A new inhaled antibiotic was intended only for symptomatic use, meaning that we would only use it when he has symptoms of tracheitis. We don't want him to become resistant to that, too. But at the same time, he needs to not be getting repeated infections every few weeks. So now we will use it cyclically, 4 weeks on/4 weeks off, until we can space his hospital admits farther apart. 

I'm hopeful this will work. Years ago when we started Tobramycin, he had been hospitalized four times in five months. We went almost two years before his next pneumonia. There were other things in there, including a few surgeries, but no pneumonias. 

He needs to have a long healthy spell to gain back what he's lost the last couple years. They've been pretty rough. 

So the plan is to watch for the morning and into the afternoon and then head home. Fingers crossed.... 

"The thrill of coming home has never changed."

Guy Pearce

Little Things Aren't So Little

We're here, still, for who knows how long. 

He finished his antibiotics on Wednesday.

Labs looked really good!

He didn't.

Both the doctor and I weren't thrilled with him.  I mean, he plays, he's interactive, but not nearly as much as he usually is. He's more tired. 

So the plan was finish antibiotics on Wednesday. Do a CBC to check his white blood count Thursday. Go home on Thursday as long as it looked good, and it should, right??

Nope. It was up again this morning. Not a lot, but some. So out of an abundance of caution ('cause I really HATE bounce backs) we decided we'd do another CBC this evening about the time I got off work. If it was good, we'd go home. 

We're not going home. 

It's up even more. (12 and above is considered elevated. It was 14 this morning, 18 tonight.)

So yeah...

But the title? Seriously, little things are so big!

When the WBC came back at 18, the doctor decided to get another chest x-ray. Usually they just bring a portable machine. I mean, it takes quite the entourage to move this kid when he's inpatient: nurse, tech, RT and often one or two others as well. But I guess the doctor wanted the more precise x-ray so they took him downstairs.

As I came through the door, the tech who had been on the unit with him was leaving for the day. She stopped me to tell me they had taken him downstairs for x-ray and were almost done, but that his room was empty. She wanted to give me a heads up.

Do you have any idea what it would have done to me to get up here with an empty room and no warning?? I mean, I would have gotten over it quickly, but still, those heart-stopping few seconds before I knew...

Such a little thing she did. A few seconds is all it took. I'm sure she was tired and it wouldn't have ultimately changed the outcome. But with everything else I had going on, it would have taken a bit of a toll. One more stress. One more anxious moment. And she prevented it. 

Then there was dinner: a group came and put together a fairly simple but yummy meal. Another stress break. Something else I didn't have to think about. So grateful for their service.

Those are the things that make keeping on happen. They are the moments that brighten the heart and lift the soul. So many people tell me they "don't know how you do it."  Well, this is how. I'm blessed and lifted by so many.  And I'm so grateful. 

"While it may seem small, the ripple effects of small things is extraordinary."

Matt Bevin

Kinda Frustrating

Code to enter the unit. 

This is hard. 

Not hard like it was in June, or last year.

Or lots of other times.

Hard as in it looks like maybe we won't be home on Tuesday after all, and I struggle with changes like that.

He started creeping up on his temp over the last couple of days. Not really a fever, just higher than he had been. But today, today he ran a fever.  Which lead to x-rays and lots of labs. X-rays that showed possible/probable new pneumonia.  Those are NOT the changes we were hoping for. His white blood count has gone up as well, although it's still in the normal range as well.  He's continuing to have his cranky brain spells where he drops his sats by up to 20 percentage points, but that's kinda expected since he's sick.

Tomorrow we'll get infectious disease (ID) involved. We need it NOT to have to take Zocin off his list of antibiotics. The number we have available is getting smaller and smaller. It needs to not get to zero. 

So that's where we are.  

Lower is x-ray from last Monday.
Upper is today. 😞

Here.

At the hospital.

But still on the floor.

He smiled when talking to Daddy on the phone. He "helped" with his g-tube cares today. He tried to look around various caretakers who were in the way of his TV show. And he's been whaling away at his toys. So he's doing okay.

It's me that's struggling. And that's okay. I can sit with this. I don't have to be happy and positive all the time. 'Cause sometimes this is hard. Sometimes the pressure is intense. And the ironic part is that it's usually when he's not as critical that my feelings are difficult to sit with. Maybe because when he's in crisis there's not time to stop and work through things. That's when I just have to move forward and leave the processing for later. So I'm going to sit with my feelings. Allow them to talk to me. Get to know what I'm dealing with so I can understand. They're not "bad" per se, just hard. And that's part of being human.

Plus I miss my bed. 

  If we will be quiet and ready enough, we shall find compensation in every disappointment.

Henry David Thoreau

Three Guesses, and the First Two Don't Count

When asking the obvious question, my mom used to say, "I'll give you three guesses, and the first two don't count." It was her way of saying, "You know exactly what the answer is."

So here it is: Where's Aaron? I'll give you three guesses and the first two don't count.

Yep, you got it.

We're back.

I kinda expected this would happen, and even pretty much saw it coming. 

I mean, the antibiotics that we've been using forever to keep his tracheitis at bay have been subdued by the enemy. So the plan was to try to get something else, but only use it when he was symptomatic. 

He got something or other about a week ago and we started seeing it in his trach, eyes, and right ear. Yeah, the same place we always see problems start.  But no fever, no nasal discharge, and other than tired, he mostly did okay. 

He did become less stable, but it was for a few minutes here and there each day.  Unstable like, he would drop his sats to the 60's and sometimes 50's.  Not good, but again, it was brief. 

So Monday evening we came back up to get checked out. He looked good, really, but I was on edge with things. In the ED, everything was coming back right in the normal range.  He was even pretty much baseline on his oxygen. There was no way he needed the PICU so he came up to the floor.  We had a new doc on the team who very much didn't want to use the big IV antibiotics. I mean, I get it. They need to not be used except when very much needed.  But when the germs don't respond to anything else (including the one he was sure would work), they're needed! Whatever. 

Yesterday also went really well except I was pretty foggy. We didn't get to our room until just after 5 am. Discussion last night was that we would wait until today for the samples to finish growing and then go home tonight. 

Yeahhhhh. 

Maybe not.

Those grew out just like I was afraid they would. We need those IV antibiotics, and a week of them. Plus, he's become less stable through the course of the day. Instead of mid to high 80's on 3-4 liters, he's struggling to maintain 77 on 8-10 liters. I really don't want to end up in the PICU.  I guess the plus side is, (if he reads the script right) I'll take him home next Tuesday on what's my day off anyway. That will be a lot easier than working all day, driving back up here, and then driving home. Sigh...  

So yep, Aaron is hanging out at Primary's. And frankly, he's having a good time here. I'm grateful for that.

When it is obvious that the goals cannot be reached, 

don't adjust the goals, adjust the action steps.

Confucius