Summer Projects

We had planned to be raising puppies this summer.  That turned out to not happen, so we went with other projects.  

Some on the house, some medical.  Because, of course, why not?  

Anyway, we've got an upstairs bathroom that was a little rough when we moved in.  Almost 20 years later,
it was way past time to fix it up.  I LOVE my new light, and frankly, designed the rest around it.  I mean, isn't that what you're supposed to do?  

What you can't see in the "before" is all the 
holes in the wall and the general "yuck." 
All gone now!

Then we got a new lock for our garage door.  Almost no one uses the front door.  We all go in and out the garage door, and the nurses use it too.  Putting a combination lock on it meant that everyone has their own code and it's locked all the time.  But then I got to looking at that door...  Yeah...  Apparently my kids (when they were little) thought it was way cool to use their bikes and scooters to "open" the door by popping wheelies and such.  And the door showed it!  Framing coming loose, dents and scrapes on the door.  It was UGLY!  So I spent time scraping and repainting and reattaching all that.  I forgot to get a before pic, but after looks pretty awesome!  

And then there's the general clean out of "stuff" that I've kept through the years because it would be "needed" someday, or someone would grow into it.  I finally figured out that if none of the older kids were going to wear something, it stood to reason the youngers wouldn't either, but it took me a while.  

So those are the home projects, and I'm almost done for the summer.  Not that there's not a lot more that needs to be done, but frankly, my summer time is coming to a quick end.  Because you know the medical projects.

Aaron is currently in the PICU again, but this one was planned.  He's switching to a new ventilator and so far it's looking AMAZING!  He's doing really, really well!  Not sure how long we'll be here.  Apparently this stay is driven by the insurance and it will depend on how much time they say he needs to be here for observation.  I've got fingers crossed for 48 hours.  24 would also be nice.  Really hoping it doesn't end up being the 72.  

And we're still trying to figure out who can repair that hole between his artery and vein in his right groin area.  

Then there's me.  A few days before his heart cath I woke up about 1:30 in the morning in significant pain near the bottom of my ribcage.  I tried for about five hours to talk myself out of it, took antacids, Tylenol, tried different positions.  Nothing really worked.  About six, it became hard to breathe because it hurt so bad so I gave up and woke William.  The good news is that it wasn't my heart, which is what I was afraid of.  The bad news is that. they think my ulcer may be back and I also have gallstones, one that's especially big.  

So lucky me, I get to have my throat and stomach scoped in September, and I'm having my gallbladder out on Monday.  'Cause isn't that what everyone wants to do during summer?  Frankly, I'm feeling fine!  But the doctor warned me that if I chose to wait until I didn't feel "fine" I would end up really sick.  So I guess I'm doing this on my schedule instead of my gallbladder's.  The good news is that I'll be mostly recovered by the time school starts again.  The hard part is I can't lift anything over 20 pounds for four weeks.  Yeah, Aaron left that one behind a LOOONG time ago.  And because I have never figured out how to sit back and tell people how to work without jumping in, that means that any projects around the house have to be completed before Monday.  I guess that's okay.  We did get a lot done, and learned a lot in the process.

School starts again in a few weeks and I can't wait!  I've needed this break, this time to not focus on the academics, but I'm ready to get going again.  Part of self-care involves changing things up

You must learn to make the whole world your school. 

~Martin H. Fischer

Mischief Managed

Heart cath was yesterday, and by all indications, it went really well!  

I haven't been this nervous for a procedure for a long time.  Of course, it's also been a long time since he's had one.  2017 to be exact.  His last heart cath.  The one where we decided that we weren't going to be doing that again without a really good reason.

We had a really good reason. According to his last echo, he was in rough shape.  His pulmonary hypertension is working his heart too much, and there wasn't much of an outlet. 

Think about a traffic jam where all the cars are trying to get through.  Or maybe a really crowded highway.  But often there are other surface roads that might help relieve the congestion.  

Most of us don't have any "surface roads," but we also don't need them.  Our "highways" are more than sufficient for the "traffic."  His?  Not so much.  So that's what yesterday's plan was.  Construction to widen a surface street to alleviate some of the congestion.  Does it fix the problem?  No, not at all.  Still too much flow for the vessels and like taking a surface street, it's not ideal.  Frankly, we put a bandaid on a pretty big wound.  But that bandaid does buy time.  And time is precious. 

Reality is his numbers were ugly.  Our pulmonary pressures are about 1/3 of our systemic pressures.  (Blood pressure in the lungs vs blood pressures throughout our body.) Not his.  At his last cath in 2017, the numbers were pretty equal.  This time, at the beginning of the cath, his lung pressures were about 30 points higher than his body pressures.  That's not good.  

The doctor was able to open up his PDA some, actually about double in size from 2mm to 4mm which will definitely give some relief for the right side of his heart.  On the other hand, it will also lower his oxygen saturations, especially to his lower body, because when you mix mostly unoxygenated blood with mostly oxygenated blood, well, you know how averaging numbers works. 

On the other hand, he still has the hole between his femoral artery and vein on his right side.  The artery above the hole has dilated significantly, which made repair in the lab not safe.  In order to put in a patch big enough for the upper part, it would have probably torn the artery below the repair.  Kinda not a good thing...  So our cardiologist is going to talk to general surgery and vascular surgery and we'll go from there.  But that's a conversation for another time.  

On the positive side of things, he's looked really good for the past couple of weeks.  He was as optimal as he gets going into the procedure.  This morning he woke up happy and we'll just take it from here.  The plan is to go home today but we'll also see what today brings.  For now, he's in a good place and ready to move forward.  

After all, he is the Boy who Lived.  

"We’re all human, aren’t we? Every human life is worth the same, and worth saving." — Kingsley Shacklebolt. Harry Potter and the Deathly Hallows

 

Summer: Rest, Relax and Heart Cath (One of These Things is Not Like the Others)

 Lazy summer days (or something like that?).  

I LOVE summer.  I even like the heat (most of the time).  Days are slower, less hectic.  

Time to read, relax, rest, and recover.

And while Aaron doesn't read, he loves to be read to and he seems to be handling the other three as well!

It's been a slow process.

Just over five months ago, our traumatic hospital stay started, and only a few days shy of when things got truly awful.  Remembering him lying so still, so swollen, so non-responsive is beyond painful.  I asked my mom sometime this spring (April-ish?) how long it had taken for her to start to feel like she might recover after her own battle with sepsis.  She replied, "Oh, months. Months and months."

Well, here we are, five months out.  And guess what?

It's starting to look really good again!  He's smiling, he's playing, and while he doesn't have the energy he did before, it seems to be improving as well.  

He has struggled lately with a lot of digestive issues.  We've been working on his diet but finally his ped and I decided that things were just too suspicious to keep waiting. He ordered an abdominal and pelvic CT scan with contrast for Friday, June 24.  We went up and Aaron was doing okay.  He wasn't thrilled about taking in a liter of fluid over about 30 minutes, and he really didn't like the IV, but after that?  Well, I love how Primary's tries to make things as fun as possible and the CT room is no exception.  Apparently he thought it was pretty cool, too!  We placed him on the gurney and he just grinned and laughed as it slid in and out taking pictures.  Five minutes later (maybe not that long), he was done and we were on the way home.  

And what did it show?

Well, the digestive part was pretty unremarkable, which is great!  But just because you're looking at the digestive system doesn't mean that the rest of things just get out of the way.  We also saw his lower lungs, his diaphragm (both a bit abnormal but nothing new there), and his blood vessels.  Those blood vessels...

I don't think there's really anything "awful" about what's going on there, but he's definitely got some funky stuff going on.  And that CT scan that we just barely had, that showed us this?  Well, that is going to make a big difference this week.  

I mentioned that we were going to switch out one of his cardiac meds for another one.  Well, that experiment did not go well.  I have no idea what it did or would do for his heart because his digestive system did not like it.  At. All!!  In fact, when we went to DreamNight at the Zoo, he was either out of it or miserable.  It's so hard to watch your child struggle and suffer and not be able to do anything to fix it.  While I think everyone else enjoyed the outing, it was very much bittersweet for me.  Hard to see him so apathetic to what used to be a fun outing, but at the same time, I saw so many friends that I never see.  While the kids (okay, most are adults now) enjoyed the zoo, it was seeing other special needs moms that filled my soul. 

Anyway, back to the CT scan and where that's going.  I was able to speak to the cardiologist who is scheduled to do Aaron's heart cath and we are going to go ahead with that procedure.  She feels the risk is more than outweighed by the benefits and after talking with her, we agree.  But having that new information ahead of time means that there will be fewer surprises when she goes in, and hopefully none!  

So we will be heading to Primary's on Friday, July 8th, for his heart cath.  She will "probably" go in through his left femoral site, try to get pictures and possibly repair the fistula on his right femoral artery/vein, and then move into his heart to get more information and possibly open up his PDA more.  

It's risky.  Truly.  As I've mentioned before, his asthma and pulmonary hypertension are not friends with anesthesia.  And a heart cath brings its own risks to the table.  But the benefit would be a more energetic, longer life for him and after reviewing the risks (again), we decided we need to give him that chance. 

So I guess the long and short of it is, please pray for him, for us, and for the doctors and staff who will care for him.  Today is Fast Sunday for our church, and we would ask that if you're willing, you'll remember him in your fast and prayers.  I believe in miracles.  

Summer, when good things happen.

"God's gifts are measureless, and there shall be

Eternal summer in the grateful heart."

~Celia Thaxter

12 Years, 4383 days, 105,192 hours

So many numbers.  They only begin to tell the full story, one that is not over yet.  

Today Aaron turns 12.  Twelve years!!

Last night we had a party for him.  It was a much smaller scale than his first party, but similar as well.  Friends and family came to wish him happy birthday.  We had cake.  And he was tired.

He pretty much slept soundly through his first birthday.  

And he dosed off and on all evening yesterday.  

It's just where we are now.  

So grateful for this little man, this teacher of our souls.  He is such a blessing in our family and in the lives of many others.  

He did wake up and smile when he heard the sirens though.  I pointed out that yes, his friends had come.  And No, he wasn't going with them.  

Happy Birthday, Aaron.  We love you.

"The more you praise and celebrate your life, the more there is in life to celebrate."

Oprah Winfrey

I Stand for Good Days

School is ending which means end-of-year activities.  Field Day, graduations, concerts and dance festivals.  

Dan Peterson School has a dance festival each year.  Each class dances to a short song.  There's a Sno Cone truck.  Pretty fun!  If you want to see movement with enthusiasm, these kids have it!

Holli warned me that I would cry.  I didn't understand.  I kinda got an inkling when I realized his class was dancing to "Still Standing," but even then, I didn't understand.  

As the kids came out, they each had a big sign with "I Stand For _______."  "Music."  "Achievement."  "Me."  Aaron's was backwards, which I thought was a little odd, but whatever.  

And then he came forward and Holli turned his around.  Somehow, I suddenly couldn't see clearly.  "I Stand for Good Days."  Good Days.  Yeah, we haven't had a lot of those lately, but that's what he chose.  And it was his choice.  They didn't choose for him.  

This kid.  With all he's been through, all he's going through, he stands for good days.  What an attitude. 

Frankly, I think there have been more bad days than good lately.  But him?  He's still standing, still smiling, still reminding me to keep going.  

Aaron saw cardiology on Monday.  It didn't go well.  While both sides of his heart continue to squeeze well, the right side has gotten quite large and is also much thicker before.  Increasing muscle size?  Pretty awesome for biceps and triceps.  Not so much for the heart.  It's being overworked.

Somehow the VSD has started closing.  This would have been great in the beginning, but now it's needed for pressure release.  His doctor wants to try to change one of his meds, hoping that if he takes it through his g-tube instead of inhaling it directly into the lungs it might be less irritating.  He also wants to consider doing a heart cath, possibly repairing the hole between his right. femoral artery and vein, and maybe widening his PDA.  That's a duct between the pulmonary artery and the aorta.  Then that could act as the pop-off valve he's needing.  

But Aaron doesn't play nice with anesthesia anymore.  It gets into a brawl with his asthma and pulmonary hypertension and no one comes out a winner.  There's also a risk of the hole rupturing during the procedure which would be catastrophic.  

On the other hand, he's not doing great most of the time now.  He's tired.  He's still fevering off and on. He's starting to retain fluid in his belly due to the congestion in his heart.  We don't know what the "right" answer is.  

Years ago, when a dear friend told me her daughter was "done," she told me they realized they were doing "to" her and no longer "for" her.  We want to do "for" Aaron for as long as it helps him, but have no desire to torture or do "to" him.  

Last week when he was struggling, we saw his pediatrician.  I knew if I took him in, they'd admit him.  But if there's nothing that we can do, I don't want to tie him to a hospital bed, and his ped can order the labs and x-rays needed.  Nothing jumped out, so we just continued maintaining at home and letting him go to school.  And to his dance festival.

We haven't given up.  He also has shown signs of food intolerance regarding his formula.  For the past two years, he's had formula five days a week and blended food twice a week, at least up until he got so sick.  Then for several weeks, it was just the formula.  Knowing he does better with real food, we've gone back to blending full-time.  It can take up to two weeks to clear that out of the body.  I'm hoping that will help.  

But the reality is, we just are not sure what to do.  So we're turning to the One who does.  He loves Aaron, even more than we do, and He loves us, too.  On Sunday, we're going to hold a family fast where we ask for healing, for guidance, and for strength.  We would love to have as many people who are willing to storm heaven's gates, praying for Aaron, for us.  We know miracles are real.  We've seen them, felt them.  We also know that sometimes the miracle that comes is not the one we're hoping for, but it does not make it any less miraculous.  

We've had almost 12 years with our sweet boy, and frankly, I'm greedy.  I want more.  But what we really need is clarity and guidance and comfort.  

And through it all, we'll still be standing for good days.  

"Howbeit this kind goeth not out but by prayer and fasting."

Matthew 17:21

It's Been Hard...

It's been a busy month around here.  But then, I'm not sure when it hasn't been.

Since Easter, Aaron has continued his ups and downs.  We were admitted again the first week of May for a few days.  (May 3-6)

He was struggling, again, and clamped down hard to where we weren't even able to bag him.  THAT hasn't happened since he was tiny.  That time was shortly after his trach surgery and led to three attendings at his bedside at 2 am, pushing three different sedatives through his IV.  

This time it was me and his awesome school nurse.  And we gave him Ativan in hopes of relaxing him enough to get him to let us help him breathe.  

It worked.

In fact, it worked well enough that by the time we got to the hospital parking lot, I considered whether or not we really even wanted to go in.  We did.  They admitted him and decided it was a pulmonary hypertensive crisis combined with an asthma attack.  

Can I just say that either alone is a challenge for gas exchange?  Together??  Well, no bueno.  So the asthma narrows the airways and makes it hard for the air to get in and out.  Pulmonary hypertension tightens the blood vessels that are supposed to be carrying that oxygen and carbon dioxide.  So let's not just have one problem with our lungs, let's have TWO!  

And then while there, we discovered that the eye infection he's been battling since he was so bad in February had morphed into corneal ulcers with infection.  Fortunately, with new antibiotic drops and hourly round the clock moisturizing drops for a few days, it seems to have almost completely cleared up now.  

In the middle of all of this, I was finishing finals and Mary graduated from the U with her MBA.  Fortunately, I only had one left and managed to take that while also in the PICU.  Mary's convocation and commencement were right down the road from the hospital.  They were wonderful!  I do love all the pomp and ceremony.  One more year and I'll be doing the same (just further south).  

You know I said it was busy.

We've now seen ophthalmology (May 9) and comp care (May 11) and are scheduled in with cardiology on May 23.  We're playing with medications again and changing up his food.  He's eating a blended diet again while we try to work everything out.  He does do so much better on real food so we're also seeing a dietician the end of the month.  Good thing I'm on summer break from school, right??  

Right now, he's continuing to struggle.  He's fevering again off and on.  Sometimes it responds to Tylenol/Motrin suggesting an illness, sometimes to rescue meds suggesting storming.  He's happy.  That's huge.  But I feel like we're always on edge right now.  

This is hard.  I don't know where it's going, at least short-term.  I know where the long-term is going and I refuse to think about that, at least as much as I can.  

So that's where we are, where he is, where I am.  

I'm glad summer is coming, I've missed the sun and the warmth.  I am looking forward to a slower pace for a couple months.  I'm grateful, more than I can say, for his smiles!  In a lot of ways, this is easier than when his vitals were looking good but he wouldn't/couldn't smile.  I figure, as long as he's smiling and playing and being goofy, we'll get through it.  

But I would really love it if he could stabilize for a while.  It would make my mama heart happy.  I think we both need a rest.

“Take a rest. A field that has rested yields a beautiful crop.” 

– Ovid

Easter Morning

It's quiet here right now.  Most are still sleeping.  The sun has risen.  I have time to think.

But I'm going to be real here, sometimes thinking is not what I want to do.  It's easier to deal with pain, worry, frustration, fear if I can stay busy, always be rushing, be concerned with "doing."  

Thinking, that's hard. 

It's been difficult here, here in our home and here in my heart.  Aaron has not been doing well.  It started oh so slow that we didn't really recognize it at the beginning of the year.  Then like a train gathering steam, it chugged on, accelerating, pretty much rocketing out of control by mid-February.  We (kinda) got it under the danger limit by the end of February, but still, that train kept moving.  

In reality, it's been moving since the moment of his conception.  We didn't actually realize it until that first ultrasound.  Like all of us, that train moves constantly in the direction of death, but for some, it moves at a much faster pace.  Sometimes we get to glide gently and smoothly into the station.  Others face derailment, catastrophic overturns, or other painful ends.

But sometimes, that rough track eases up, the vistas open, and the ride isn't quite as rough as it has been.  In looking at Aaron's medications, there was one that was well below a therapeutic dose for his weight.  We increased that.  We considered the tightness of his muscles, especially when storming (hypertonia and spasticity) and added another drug.  This one was purposely dosed at below a therapeutic dose to see if he could even tolerate it.  A known side effect is depression of the central nervous system.  Also a known side effect of a couple of other meds he takes.  We'd be a whole lot more worried about that if the vent wasn't already breathing for him, but even so, we wanted to make sure he didn't knock him out too much.  

That scenery?  It's looking a lot better now.  The train is still moving, but the speed seems to have slowed a bit.  The increased dose of his first medication helped ease a lot of the pain he seemed to feel.  That second med has made it so his legs and arms move more freely and without pain.  He might be a little more tired, but pain is also exhausting.  

We're getting laughter and smiles again.  

He's going to church today.

It's Easter Sunday.  Good Friday must have been a truly awful day.  Their Friend, Savior, Messiah had died, was lying in a borrowed tomb.  Saturday would have been lonely, scary, where do we go now?  Will this pain ever stop?  How do we go on?  But then Sunday came.  Sunday always comes.  

Because of Him, we will live again.  The grave is not the end.  This life is not all there is.  Pain will depart, bodies will be whole.  We will live with our loved ones and enjoy their company again.  Because of Him. 

He is Risen.