Hardest post yet

This is the most difficult post yet because I haven't had the time at all, (still don't, I'm typing this over weeks) and because we almost lost Aidan... 

well, really, we lost him and he came back.

During the Christmas break we caught that nasty violent stomach bug.  It hit us so hard, but Aidan the worst, as usual.  Zofran didn't touch it at all.  He was hospitalized for dehydration and I finally convinced them to take an x-ray close to the end of his stay that revealed what we knew and tried to get them to understand, he'd aspirated while vomiting and had pneumonia. They prescribed antibiotics and sent us on our way again.  Like always.

Leaving the hospital... He was still so sick, but he did NOT want to stay so he was really faking it.

At PCMC in between the two emergencies.  Damon had a sleep study, and Aidan and Jace had appts with neuro and genetics.

Then 2-3 weeks after being released from the Christmas pneumonia we caught the Human Metapneumovirus or MPV.  The second it hit Aidan he couldn't cough, swallow, or talk.  I was super concerned and let Lincoln know he'd be taking Aidan to the ER as soon as he returned from work that afternoon.  As we tried one last time to get him to eat, he went into status at the dinner table. 

He was immediately admitted upon arrival.  And when they could not bring him consistently out of unconsciousness, they moved him to the EIRMC PICU. 

Waiting for his dad to rush him to the ER.
Just this photo makes me tremble... I always have a prayer in my heart, but from the moment he went into status that evening it formed an intensity difficult to describe.
My whole being was deeply into the prayer.

Before we knew it, he was literally dying in front of us and the only thing we could do was sign "resuscitate."  The worst night was THE most exhausting, awful, terrifying night of my life.

Every minute we thought there could not be one more thing go wrong or done to him, another was.

His lungs were completely full on both sides.
Pulmonary failure.  Severe edema.  MRSA.
There was more, but I can't even remember it all.
Even when we were promised the medications would keep him from feeling anything or knowing what was happening, as they shoved the ventilator tube (they have to use a large metal vise) into his chest through his mouth, tears streamed down his face.  I let out a cry.  All the nurses and Dr looked back at me like, what?
I wanted to run to him.  But I'd promised I'd stay out of the way.  Worst feeling ever.

Our life stopped dead, while everything and everyone else kept whizzing by.

The oscillator was loud and sounded just like a steam engine.
Before and after the oscillator (while on the regular ventilator) his beautiful face was covered with a large mask that engulfed him.  Much like all the IVs and machines keeping him alive dwarfed him in the room.
The Drs and nurses had to carefully squeeze their way into nooks and crannies to fit to his ports and body.  Even with it being a large hospital room compared to PCMC.

They allowed us to bring Sandy for visits.

The get well wishes started rolling in.

And then, it was Aidan's birthday.  It was heartbreaking that he couldn't even eat the perfect cake.

 We coordinated visits for his brothers. Very emotional times... the boys just seemed to know exactly what their brother needed.  They didn't appear scared by any of it.  We did take advantage of the child life therapist showing them the dolls beforehand, but I honestly think our boys were in tune with Aidan enough they'd have been fine without it... they were running to his room to see him, and didn't have any look of fright when they got there.  Sometimes I wonder if we adults don't put on them our own fears.

Right before a very generous old classmate and his wife watched Aidan so we could get away for a date.  We almost never get them... put us in a situation like this and it's impossible.  Well, we got one!! lol

The PICC line they had to put in.

Meanwhile we had this huge thing in the background the whole time about care for his brothers, at home.  Wonderful people stepped up with willing hearts.  But we had liability issues to remember.  So it ended up being very specific people who were already trained and knew the boys very well.  Honestly, I couldn't even wrap my brain around it most of the time.  I desperately needed this to be taken care of by those around us who were leaders in our local ward, and those who worked with and knew the boys needs well and love them as much as I do.  That is what took place.  And I'm eternally grateful.

Jace himself ended up with an abscess that caused him so much pain... because other people were taking care of him, it took a while for me to figure out there was even a problem that needed medical attention.  But as soon as I did, I got him appts and sent Lincoln.  We were told they'd have to keep him at the hospital to remove it, but the Dr had his facilities in office and chose to do it there.  Long story short, he was fine at the 2 week checkup.

After a month in that PICU, Aidan was still not getting better.  The Drs felt very strongly that he should be transferred to PCMC to undergo more testing for the genetic whatever causing all this.  The thing that was preventing from getting over the pneumonia.  "The underlying issue needs to be found."  They also suggested a Gtube and Trach.
He was going to be lifeflighted down, but I told them he'd do much better if I was with him.  Since they could not guarantee I would be able to go in the helicopter PCMC sent for him, they transported us by ambulance.
It's freaky being in the back of a metal box on wheels in stormy weather, as the driver keeps passing everyone... Even though I knew in my mind he ought to know what he was doing, we were getting shook around like a small plane in a rain storm.  Let's just say we were both glad to be getting out of that thing.

Upon arrival at PCMC, there were immediate problems caused by, supposedly, the transfer papers.  I'm not sure if that's true or not, but I know we wasted a week and a half before what we were there for started to be addressed.  If we were there only for his pneumonia, edema, and MRSA to be treated, we could have stayed... they were completely capable right here.
Went through several ventilator masks before the trach was put in. None of them were remotely comfortable for him.  This was THE smallest and fit him like a glove. I thought for sure it would work.  Nope.

I was asked repeatedly how I felt about putting in a trach and gtube.  They prefer parents to make the decision before it's an emergency that forces the decision onto the Dr. (I found this out after I decided.)
Anyway, after much thought and prayer, I chose both.
Though it's heartbreaking Aidan can no longer enjoy his favorite Big Juds meal and often complains of being hungry when he smells what I'm cooking, I do not regret the life saving choice I made for him.
The Drs reaction when I told them was obvious visible and audible relief.  Then they expressed, they would have been putting them in a month later by emergency if I had not made that choice then.

The trach and gtube doll. Scared about the surgery.

Soon my sister arrived to help advocate so I could focus more on Aidan.
Test after test proved what I'd been reporting all along, but nothing gave a definitive answer of what it is.  His NJ tube was removed and they put in a Gtube.  The bi-pap was removed and they put in a Trach for the ventilator.  I took a weeks worth of classes to learn how to care for those two life saving changes.

I found from the swallow test that though he "passed" swallowing, the food and liquid pools in his throat, causing aspiration.  They explained that as his muscles in his throat deteriorated, he was aspirating... he has most likely had pneumonia for quite some time.

Aidan had repeatedly been lied to, manipulated, forced, etc. to get whatever it was they wanted done.  My sweet, mild mannered child was now lashing out, and sometimes even at me and my sister.  I won't lie, it broke my heart that he was so angry with me when I was actually fighting so hard for him to be more comfortable and better taken care of.  But kids see things so differently... I remember being angry with my own mother for certain things, when in reality, she'd done nothing to deserve it.
So when we'd been there for just under a month, I said, we are leaving, period.  It was safe for me to take him now that I had all my training, but they were willing to do more tests.  I knew Aidan had had enough many days before, so I chose to just end it then.  The only tests left were later suggested not to be done anyway.  So what's left is a new genetic blood test that can be ordered once we've had the chance to meet with the metabolic geneticist again.  He did already say though, everything does point more and more to mitochondrial.  The final main diagnosis (there's all the other ones still like LGS, T1D, Autism, etc.) leaving the hospital was Degenerative Genetic Disorder NOS.  No longer strongly suspected, but now there was proof with MRI, EMG, and other testing that it really is progressive and untreatable.

By the way, we love our specific Drs at PCMC.  We have no issues with appts, etc.  But an actual impatient stay is a nightmare.  Especially the PICU.
We went from sweet, quiet, loving, very personal care to loud, insensitive, cookie cutter, impersonal herding through.  To be fair, it did improve somewhat after my sister showed up and we both insisted things change.  The power of two! lol

And the team that takes over when your child is multiply disabled does work super hard to make sure your transition to home is not a nightmare.  I was grateful for them!!

The trip home though... wow.  The seat was too small, he was in too much pain for the ride, the weather was too warm and we were not provided enough humidity for him.  Three trach changes in less than 24 hours is hard on a little guy, especially when one of them is an emergency with his O2 droping to 68... I thought we'd lose him in the blasted parking lot just miles from the hospital where we'd stopped for food before truly heading home.  I'm sure the other people nearby thought I was totally nuts, as I screamed and screamed for him to come back into consciousness.  No repeats of that please!!

We haven't been alone with him since all of this happened either.  So having much conversation about what happened is impossible.  But what I do understand he experienced while unconscious was leaving his body and seeing his grandfather (my dad) and his brother Clayton.

I can't just say, oh I'm so glad it happened this way.  It would be a lie.
I have really mixed feelings about it.
Elation he made it.
Guilt I begged for him to stay here and not just be released to peace.
Fear his anger is at least partly from my wishes.
Pride he is such an amazing person.
Hope that he will figure it out.
Tremendous love for him, his brothers and their daddy, and our Saviour and God.