Impatient Patient

Well, we ran away, quick like a bunny, but probably too soon.

He IS still at home and we're not planning to go back, but it's been a bit of a battle keeping him here.  I think it's been one part stubbornness and two parts lots of equipment and experience.

We've bagged him a few times, put him on tanks of oxygen at 10 to 15 liters, and briefly tolerated sats in the mid-80's.  Let me tell ya, running on 12 liters a minute, you can empty a full tank in  just under an hour.  Fortunately, since he's been in the hospital and on their oxygen, we've got plenty of tanks.

But he's happy and we're at home.

Wednesday he had appointments both with a dietician and orthopedics. We're tweaking his food again, but just a little bit.  Overall, we've got a good plan in place.

Shriner's Hospital takes care of his orthopedic challenges.  They're the ones that did the casting and surgery on his feet and are following his scoliosis.  Once a spinal curve reaches a certain point, it progresses fairly quickly.  We're getting there, so they're watching him every year.  BUT he's only progressed from 33% to almost 35% curvature in the past year.  That's really good.  At some point, he'll need surgery, but we won't even talk about it until he's past 50%, and probably not until closer to 75-80%.  By then it will impact his lungs and heart so it will be a necessity.  So frankly, almost 35% was a good thing to hear.

Right now, he's hanging out at home.  We tried to go to church today, but no dice.  He needed too much oxygen to be able to stay.  But he's laughing and playing.

Plus, it's big brother, Joseph's 16th birthday, and our last birthday for over two years that we'll have everyone here for.  He missed Dad's and Matthew's 'cause he was in the hospital, although he was around for Michael's.

And maybe next time he's at his "vacation home" Mama won't be such an impatient patient.

Experience has taught me this, that we undo ourselves by impatience.  Misfortunes have their life and their limits, their sickness and their health.  

~Michel de Montaigne

Run Away!

Fun sticker child life made for his bed.

Yep, that's the plan:  Run Away!!  Of course, we have to turn around and come right back for clinic visits tomorrow, but still...

We've made it back down to where his oxygen needs are manageable at home.  Seriously, that's what this whole visit has been about.  His sick little lungs needed more oxygen than our home concentrator was able to provide.  But yesterday we worked hard to keep him stable on less.

This building is across the street from the hospital.  We
watched it go up, and they've left to giant builder bear
stickers on the windows.  Fun. 

Sometimes the impulse has been to turn him up and not try to figure out the why behind the increase.  I mean, it's just a little bit, and a little bit more, until it's actually a long ways from where he started.  But yesterday's team of nurses and techs really put forth an effort to move him around, suction, make sure probes and leads were actually accurate instead of just assuming they were.  And while he did go high for a little bit, it wasn't long.  So I think, I hope, we're good to go!

There have been some bumps this time around and I'll be working with some powers that be to make sure they don't happen to others.  But by and large, the staff up here has been wonderful.  Plus, there are some really fun friends who make it worthwhile, and frankly, this is the only place we ever get to see each other.



And there's always a fun touch of whimsy.  It's Christmas in July, and Spidey is all decked out.  Makes me grin.

This is view from our window.  It's hard to find it in the light, but at night, the Salt Lake Temple is a beacon in the darkness.  There have been some frustrating moments this time around, but when I look out at the Temple, I can remember that it's going to be okay. 

“When you mature in your relationship with God you realize how suffering and patience are like eating your spiritual vegetables.” 

― Criss Jami

Still Here

We're still here, still hanging out, still playing at our "vacation home."

Yesterday though, he had a lot of blood in his right ear.  We cleaned it, and more came, and some more.  I think I irrigated that ear with over 10 ml of an alcohol/vinegar rinse (that's about 2 teaspoons).  We're pretty sure his eardrum ruptured, which in itself is not a great thing.  BUT it also means that the pain/pressure from behind the ear is now gone, and that makes breathing, swallowing, just living, much more comfortable.

And guess what?  His oxygen needs are dropping.  We "only" needed 7 1/2 liters at his highest yesterday, so it's progress.  Today he's at three, but he's still pretty tired.  We'll see what happens when he's fully awake.

I went to church today at the hospital.  As I looked around, I marveled again at the diversity there.  There were those in suits with their wives in dresses.  There was hospital staff in scrubs.  There were a few patients in hospital gowns while others were in casual clothes or even sweats.  But we all came together to take the Sacrament and renew our covenants.

A few weeks ago, I was talking with someone whose son had been involved in a horrific accident where all the bones in his foot were crushed.  It's hard, really hard to deal something like that.  She was quick to point out the blessings.  He gets to keep his foot, he'll walk and even run again.  Someday, this will all be a painful, but distant, memory.  And those are good things, really, they are.  And I do think we need to be very aware of and grateful for our blessings.  

BUT there's also the flip side of things.  This is NOT the way this family dreamed they'd spend their summer.  It hurts, badly.  And as we spoke and I told her that as wonderful as all the blessings are, it was also okay to not be okay with things, that our Savior sorrowed for our pains and our problems with and for us, and if He sorrowed, it was obviously okay for us to be sad, too.  

As I was relating this to my family, Jonathan brought up that we're actually commanded to grieve.  But how can we bear each other's burdens if we don't know they exist?  If we always put on the happy face and claim everything is fine (my kids say "fine" means "freaked out, insecure, neurotic, and emotional") how can anyone help?  

And perhaps even worse, when we look around and everyone else does seem to have it all together, we feel even more alone than before.  

That is not the way this life is supposed to go.  It's important not to wallow in despair all the time, but it's also important to acknowledge that sometimes we don't understand why things are happening, and even though we have great faith that things will work out in the end (whenever that happens to come), what's happening now is not the way we thought things would be going.  And when you feel alone, like nobody else knows or understands, it's even harder to see your way out of the darkness.  

I have been to more funerals and viewings for children in the past six years than I thought I'd attend in my life.  I've made friends at the hospital and communicated online with people I'll never meet, giving and also drawing strength.  There is strength in numbers, there is unity and peace in knowing that you're not alone. 

Mourning and being sad are not evidence of a lack of faith.  Rather they are evidence of great love.  Christ mourned over Jerusalem and the destruction that was coming, He mourned with Mary and Martha, and did this knowing he was going to be restoring Lazerus to them.  If we didn't love, we wouldn't grieve.

Thou shalt live together in love, 

insomuch that thou shalt weep for the loss of them that die...

Doctrine & Covenants 42:45

Not a Quick Fix

I guess I figured since we managed most of his cold at home, this might be a quick little bump and we'd be right back where we were.

Um, not so, it seems.  He did really well for the first 12+ hours after we got him stable.  In fact, well enough that I dreamed of busting out of here bright and early today.  Fast, quick, easy-like.  But yesterday afternoon when we were between ten and 12 liters, I figured we might need to stick around for most of today.  This morning, we were back down to three, and I thought, well, if the day goes like that, we're still outa here, just not quite so early.

Except, it didn't.  Within a fairly short time he was above our five liter threshold.  And then more, and some more on top of that.  It was only for about 15 minutes, but he ended up back on 12 liters again, and has spent most of the day at eight or above.  Yep, much too high for a ticket out of here.

In fact, at one point, they started suggesting he might head back downstairs to the PICU.  (PICU is 2nd floor, the "floor" is 3rd floor for us.)  I got in his face and informed him that the only trip downstairs he needed to be thinking of was the one that was two floors down and then out the door.  One floor was not acceptable.  He grinned, and then cooperated, a little bit.

So we're here until his lungs can relax.  It's really right on schedule.  His pulmonary hypertension always gets worse five to seven days into a cold.  But I let myself get my hopes up, so it seems a little harder.

But there are bright spots, too.  I got to spend time with a new Trisomy mama today.  I love making new friends.  I love seeing old ones, too, like the one across the hall whose kid also thinks it's funny  to bounce up and down between the floor and the PICU, and another heart mom who gave me a ride home today.  Plus one who's coming to feed Aaron tomorrow and Sunday (if we're still here) so I can spend some time at home.  See, because we're bringing in our own food, the hospital can't give it to him.  Liability issues and all.  Either I have to do it, or I can ask another non-hospital employee adult to do it.  But staff here can't do it.

So lots of interaction with some really neat people, including great staff members that I'd really, really like to figure out how to see socially instead of professionally.  

And bonus, someone, my son won't say who, dropped off some treats for me.  He came out as I was leaving and said he wasn't allowed to say who.  Whoever you are, I've already enjoyed some of them.  Nothing like a little chocolate to brighten up a day.  

So we'll make it.  It just won't be quite as easy as I was hoping it would be.  Slow and steady wins the race, right?  And besides, Aaron thinks it's all a grand party anyway.  

If one dream should fall and break into a thousand pieces, 

never be afraid to pick one of those pieces up and begin again. 

~Flavia Weedn

I Did NOT See This Coming

So yeah, we're back in the hospital.  I SOOO thought we were going to beat this at home.  And we were almost there.

Plus, usually, I see the trip coming, at least a few hours ahead of time.  I got no warning with this one.  Like, less than 15 minutes or so.

He actually had a pretty good day, was a touch higher on his oxygen again, but not too much, at least at first.  But remember, he's had rhino, a cold, and usually that puts us in the PICU on massive amounts of oxygen, so I wasn't too worried, even when he went high.  But about 6:00 he was struggling to get out of the mid-80's on ten liters, so I bagged him, you know, just to give him a little boost.

That didn't go so well.  I put him back on the vent, and he dropped again, so I started albuterol.  He'd had it not long before, but I figured we'd try again.  As I started it, he continued to fall, like, mid-70's fall.  So out came the bag, again.  We pushed him back up, gave him some extra this time, and tried once more.  Nope, no dice.

This all happened in less than 30 minutes.  So we called our buddies at Lone Peak Fire for a ride and came on up.  I'm still not quite sure what I have and what I've forgotten.

It looks like his pulmonary hypertension has reared it's ugly head, and he experienced an extended pulmonary hypertensive crisis last night.  Often, we can just bag him out of one, but this time it went on and on.  He landed in the PICU on 15 liters (that's 15 liters per minute, so 900 liters per hour!) of oxygen. Sometime during the night, well before he went to sleep, they were able to turn him down to five liters.

We're hoping the worst is past.  Hoping for the floor later today and home tomorrow.  And man, could we just find a way to see his buddies up here socially?  Without having to make a production out of it?

"The twists and turns of your life can be so unexpected, 

and that's a good thing to learn."

Christina Baker Kline

Ups and Downs

Last week I wrote about our crazy, fun, busy week.  Fortunately, the intensity dropped a bit the past seven days, but it's still been "exciting."

We had a birthday party, two ER trips (two different patients, gotta spread the love) and a cold.

Yep, a cold, rhinovirus, Aaron's nemesis.

First off, Michael hit the double digits this week.  And he decided to get the ER in on the fun.  He's been having nosebleeds off and on, I'm sure thanks to the really hot dry weather we've had.  But the morning of his birthday, it just didn't want to stop.  After working on it for 45 minutes, we needed more than I could do at home.  So I packed it up good and we headed in.  The doc said we'd done everything right, packing it for 20 minutes, gently blowing out the clots, and repacking.  He cauterized it (said we were already the 2nd one that morning, and this was before 8 a.m.!) and said he was good to go.  Fortunately, so far, we haven't seen any more.

But Michael has also had a bit of a cold, which means that Aaron was directly in the path of the same bug.  We saw some clear stuff from his nose starting on Wednesday night.  Thursday afternoon it picked up, and by Thursday night he was really struggling, starting to run a fever, junky, and using a LOT of oxygen.  Earlier this week he managed to spit up past his nissen (the surgery that supposed to prevent this kind of thing) and I was worried that he might have aspirated into his lungs.  So we packed up and headed into the local ER.  If it didn't look bacterial, like something we needed an IV for, I was heading right back home.

This approach really hasn't worked very well in the past.  The vast majority of the time either it's obviously a nasty infection, or he decompensates (goes down hill) really fast, but hey, hope springs eternal, right?

And this time it worked out!  X-ray looked just like him, his labs were pretty good, too.  His oxygen needs have been so much lower since starting his blended diet, that we had enough room to come back home.  Had we been starting where he's been sitting for the past few months, well, trying our local ER never would have happened.  I'd have had to call our friends at the fire station for a ride up to Primary's.

It hasn't been perfect.  He's certainly had his ups and downs.  I thought maybe he had peaked on Friday, and we even made it grocery shopping yesterday (funny, people around here are still convinced that eating regularly is important).  But last night was pretty rough again.  High oxygen needs, maxed out for a little while, lots and lots of junk.

However, to put that in perspective, maxing out means I'm giving him roughly 50-60% oxygen (we breathe 21%).  At this point in a cold, we're usually sitting in the PICU on their ventilator, using between 80 and 100% oxygen.  And the only thing that has changed has been his diet.  I'm so grateful that we changed it, for everyone who's helped me figure things out.  But I'm also trying not to kick myself for not starting sooner.

Right now, he's resting.  I'm giving him breathing treatments and using his shake vest every four to six hours.  He did stay up almost all night last night, and he's not quite out of the woods yet, but I'm feeling cautiously optimistic that we're going to beat this one at home.  Home, yeah, where he belongs.

There is nothing like staying at home for real comfort. 

Jane Austen

What a Week!

 It has been a crazy, intense, busy, FUN week around here.  And lots of pictures.

We started out with the 4th of July, Independence Day.  Joseph was marching with the band again this year, so we made an early trip down to Provo for that.  Aaron enjoyed the first part, hanging out and seeing people, but then when it started, well, that wasn't so great.


See the emergency vehicles, police, fire, ambulance came by with their sirens, and not only was it LOUD, it went on for quite a while.  Just like any other small child when startled with loud noises, he wasn't a fan.  Lots of people around thought it made him anxious because of his many rides, except that's not it.  When they come to our house, we can hear sirens in the distance, but they turn them off when they hit the neighborhood.  Had he recognized them for what they were, I don't think it would have bothered him, except for the disappointment when his buddies didn't actually show up.


We did finally get him calmed down,  But a positive side note to all the tears was that he opened up his lungs really, really well!  His oxygen sats were amazing after that.

He was much happier by the time the band came by.  We claim the shorter sousa player, the one on the left.  I love marching band music.

That night, most of us headed out to Thanksgiving Point for the fireworks display.  I was a little worried about the noise given what had happened that morning, but the kids wanted to go and I figured if it was too much, I'd just take him back to the car.  Um, nope.


First of all, he had a blast watching the kids playing.  And I guess he figures that if he's eating real food now, he wants the good stuff.  Poor kid, no blender around.  He didn't get cookies in spite of his efforts.  Once the fireworks started, he just leaned back and watched and grinned.  Win!



















 Tuesday found us with a pulmonology follow-up from his last hospital admit.  Since the zoo is right there, Andrew and I decided to make a day of it.

Then when we got to the hospital, something sure was funny!   This kid was busting up laughing the whole time, but he never did let onto what the joke was.

The visit itself went really well.  Turns out that when you put together the bronchoscopy he'd had bedside and the lung CT scan, they don't say the same thing.  Dr. U said that the truth of what he's dealing with probably likes somewhere between the two. The CT scan said that his trachea and main branches were being compressed but the bronch didn't show that.  I'm okay with them not being compromised that way.  We'll also watch him closely this month because of the changes in his feeding and then try to reduce some of his asthma meds at the end of July.  I think I'm already seeing changes from his new diet.  The last few days he's had higher saturations and lower oxygen needs than we've seen in many a moon.  Maybe that's what he's laughing about??

Wednesday I had a non-driving kid need a ride to and from work at the water park about 45 minutes away.  Having not spent my childhood aspiring to drive taxi, the three younger boys went along with me and we hung out and let them play.  Or rather, Andrew and Michael roamed Seven Peaks and the water slides, and Aaron took a nap.  He sure looked comfy.

Thursday found the family at Footloose in Orem.  It's hard to tell, but the guy in emerald green is ours.  The music, costumes and hairstyles brought back a lot of fun memories from growing up.  And once again, Aaron got a real kick out of something.  I wish I could pick this kid's brain.  He sure manages to find joy in just about everything.

Friday we went up to my sister's house to visit with her and another sister who was in town, and then Saturday, they came down here on their way home.  Saturday night we just stayed HOME.  It was the first time since Sunday night that we were here for his 8 o'clock meds.

Like I said, it's been a looooong week, but a good, fun one.  We have some of William's family coming over tonight, and the younger boys have been thrilled to be having so much cousin time with cousins from both sides.  Aaron is happy, laughing, playing and interacting.

I love the changes we're seeing with his new diet.  I'm so grateful for the van and wheelchair which makes it possible to get him out and about.  Such an abundance of blessings.

The things that count most in life are the things that can't be counted.

Zig Zigler

Real Food!

The past two weeks have been an intensive learning experience.  It's become apparent that Aaron needs more than a commercial formula could provide.  If we went with the lower calorie one, his body rebelled.  If we continue to dilute his old formula, he wasn't getting the nutrition he needed.  And really, who wants the very same thing to eat, day in, day out, year after year?  Even toddlers with their strange food demands outgrow their need for mac and cheese three times a day.

But all of Aaron's food has to go through a teeny, tiny tube in his belly, so it has to be pureed really well, no chunks, no seeds, nothing that will clog it up.  That takes a high powered blender.  And I have to admit, it's been really convenient to just pop open a can and feed him, kinda like hitting the drive through when life is crazy.  But the more I learned the more I realized we needed to make the switch.

We've been using some real food blends a friend sent me as part of his diet, but Thursday night, I decided I wanted to do more.  I put a bone broth recipe (chicken, onion, carrots, celery and some herbs) in the crockpot, and prayed that I could start making this work.

Friday I found a way to get a Blendtec blender.  Talk about amazing!  And how eye opening.  Now, it did take me all Saturday morning to put things together, but I'm counting on this being a learning curve type of thing.  I made homemade almond milk first off.  Soak the almonds in water the night before, rinse them, add them with fresh water and blend.  Strain and we're done!


Next up was that bone broth.  I have to admit, my kids were kinda disappointed Friday night.  They came home to amazing smells, but it wasn't dinner.  I drained the liquid off and pulled the meat off the bones, then blended up the veggies, meat and liquid.  This big bowl holds 17 days worth of gold!   And I won't need to  do this again for 2 1/2 weeks.  Just thaw and throw it in the blender.

Then I made his blend.  I just tried to follow what's recommended for kids with his calorie needs.  I put in 2 ounces of tofu (no leftover meat around), a cup of cherries, a cup of spinach, some olive oil, a little salt, two cups of almond milk, and a cup of the liquid gold I'd just made up.

I grabbed an extra feeding extension and pushed the food through.  I wanted to make sure it really wasn't going to clog.  I mean, changing buttons is sooo much fun.  (please read with sarcasm)  It worked great!
We got it all done just in time for Aaron's 11 a.m. feeding.

Did he like it?  Well, he spent the rest of the day laughing and smiling and talking.

And the surprising part to me was how it tasted.  My kids were laughing that I was surprised.  I never have tasted his formula, but one of the kids did once and has never asked for it again.  I got a little on my fingers while working with it and licked it off.  It was really good!  A very clean, fresh taste.

I'm keeping him on the same recipe for a few days.  If something causes a problem, I'd like to have a fairly narrow list of causes.  Then we'll branch out.  My goal is to use the bone broth and almond milk as his base and vary his protein, fruits, veggies and fats.

First blended meal.  Yum!

I have to admit, I've been kinda intimidated by blended diets for a long time.  I mean, what if I get it wrong?  What if I miss something?  I've joined some support groups and a couple of old-timers have pointed out that it doesn't have to be that big a deal.  We don't ask permission from a doctor to feed our toddlers.  We don't make an appointment with a dietician to plan our grade school kids menus.  We use our common sense and what we've been taught and do the best we can.  One mom mentioned that when she does her son's cereal she uses cereal, like Honey Bunches o' Oats, or Frosted Mini-wheats.  I love it!

I'm already, not quite 24 hours later, seeing some small changes.  His digestive system (all of it) is much happier.  He's more interactive than ever (maybe not quite so good since we're heading out to church), and he was more alert all day yesterday.  He usually takes a late afternoon nap and is pretty tired beforehand.  He carried on strong, all day long, until about 10:30, then slept soundly until it was time for his 6 a.m. vest treatment.

It feels so good to give him real food, without a lot of preservatives.  I'm thinking he likes it, too.

“Let food be thy medicine and medicine be thy food”  

~Hippocrates