Friday, July 31, 2015

Our Rule Breaker...

We went to the zoo last weekend.  Here are my three eaglets
hanging out in the eagle's nest.
So far so good.  In my last post, I talked about starting vent trials again.  I'm always a bit nervous about them, you know, that whole "breathing is kinda important" thing.

But he's doing great!  I emailed our trach guru about his sats. He's better OFF the vent than ON, at least until he gets tired.

Aaron's trying to pretend he doesn't know
his goofy brothers.
Her response?  "Who knows what Aaron is doing!!  He's never followed the "rules"!  But we will take the challenge and push him forward!"

And so we are.  After spending 9 days with an hour in the morning and another in the evening, on Monday I decided to see just what he could do.

FOUR hours off, followed by five hours on, and another FIVE hours off!!  Yeah, it was a push.  He did great, but was too tired the next day to do much.  Since then, he's been 2-3 hours off at a time, usually twice a day.



He's sleeping a little bit more than usual, but not much.  All his vital signs stay stable or we switch back.
Top pic was taken two years ago,
bottom on Saturday.  I think
I see a family resemblance.  

And his lungs have never sounded clearer.



Will he ever be able to totally kick the vent?  Who knows.  But he wasn't "supposed" to live this long either.

So we'll follow his lead, give him some pushes in the right direction, and see where he takes us.



If nothing else, it's sure to be a ride.


“Know the rules well, so you can break them effectively.” 
― Dalai Lama XIV





Sunday, July 19, 2015

Trying Again...

Now that we've got some of our biggies (family reunion and SOFT conference) behind us, it's time to bite the bullet, face some fears, and try again.

Friday, we even went and got a clean bill regarding his biannual cancer screenings.  So yeah, here we go.

I was reminded during our cardio consult that if Aaron could get off the vent and breathe on his own, his lung pressures would improve.  Even an hour a day would be beneficial.   The ventilator, just by forcing the air in, increases pulmonary pressures, and actually works exactly opposite the way our bodies are designed.

You can skip this section if you already know, or really don't care.  But I've had enough people ask, that I figure it's worth going into.  See, when we breathe, exhaling is active, inhaling is passive.  It takes pressure from the diaphragm to breathe out.  When the diaphragm relaxes, we breathe in.  For vent dependent people, the ventilator pushes the air in, and then when it stops pushing, they breathe out.  And that pressure as the air goes in, causes more pressure on the blood vessels in the lungs, pressure that they normally wouldn't have.  It makes them more resistant over time, stiffer, (sounding like what you've been told about high blood pressure?).

Anyway, here's my challenge, and I recognize that it is my challenge, not Aaron's:

Every time we've made significant progress in weaning from the vent, he's caught a cold.  Yes, I realize that correlation doesn't equal causation (i.e. the wean doesn't cause the virus), but still....

It's hard to get excited about trying something that has always been followed by 7-14 days in the hospital, fighting for life.

On the other hand, if he can get this, it will improve his life, his quality of life and his length of life.  So I decided to seize the opportunity and try.

We tried 15 minutes at first, and he rocked it!  Then 30 minutes the next day.  Last night, I decided to see just how long he could go.  And to make it even more fun, we put his speaking valve on.

That works as a one-way valve.  He can breathe in through it, but to breathe out, he has to push the air up past his trach and out through his nose and mouth.  Even more challenging.

video
Friday evening breathing on his own.

ONE HOUR!!!!  That kid made it a full hour on that speaking valve!  We're doing it again this morning. I've raised the sat alarm (measures the amount of oxygen, or saturation of oxygen in the blood) and lowered his pulse alarm so that we have plenty of warning when he just starts to tire.  The only time the sat alarm has gone off is when he disconnects his oxygen, and his pulse only reached 120 (really, totally fine) yesterday after an hour.

This morning, we're at at and hour and a half right now, and showing no signs of distress at all.

Maybe, just maybe, he will be strong enough to spend some time every day like this.  It would be such a blessing, in so many ways.

Here's hoping...

With ordinary talent and extraordinary perseverance, all things are attainable. ~Thomas Foxwell Buxton

Tuesday, July 14, 2015

A SOFT Place to Land

Ever have so much to say, you don't know where to begin?  And so you end up not saying anything?

Well, when it comes to speaking, that really isn't much of an issue for me.  But writing, well, that's a whole 'nother thing.

All tucked in for the night in his tent in the room.
There wasn't time during the SOFT conference to really get online much at all.  Certainly not time to write.  But oh, what an experience.

From driving up on Wednesday and realizing that the car ahead of me was a friend who I hadn't met yet in person, but had talked with on the phone and many times on Facebook over the past few years....

To saying good-by to a sweet princess and her family as they got ready to drive back to Delaware (yeah, all the way across the country!), it was an experience I can never forget.

Someone else isn't quite ready to give up and sleep yet.  

In fact, the kids are already asking about Seattle next year.  That one might be possible, but we'll have to see.







One huge unexpected highlight was attending Grand Rounds at the hospital where I got to listen as our cardiologist presented a case for providing surgery for Trisomy kids who could be surgical candidates.  Not all are, like Aaron.  For him, his pulmonary pressures have always been too high.  But some are, and they should be given the chance.

He used a couple of pictures of Aaron in his presentation, and everyone got a kick out of one section.  He was talking about the language that is sometimes used in speaking to families.  Words like "Incompatible With Life" and "Vegetable."

He put this picture of Aaron up (having previously introduced him), then he put up a carrot.  "This is Aaron Peterson, this is a vegetable.  Notice there are no similarities."

I think he made his point.

We had workshops on a variety of subjects, some for families looking for new ideas to strengthen living kids, and others for those wanting to remember their angels.
Welcome dinner.  With us is Dominic (32) who is the oldest
male with mosaic Trisomy 18.

Thursday night was a more formal type dinner where our heroes were presented with medals.

Aaron and Deborah dancing at the dinner.
video




Hanging out at clinics with two cute girls.


Then Friday were medical clinics.  Aaron was being a bit of an oxygen piggy, so we only made it to two of our three visits, but they were very good, and I now have some more ideas and techniques to use in physical therapy, and some cardio/pulmonary goals.









Friday night was a night out on the town.  We all went down to City Creek Center, and Aaron loved riding the Trax.






































Saturday was the Stroll for Hope, the picnic and balloon release.














We went with an All American Boy theme and won the Family Theme award.  It was a lot of fun to dress up his stroller in patriotic colors.

Super Hero for a Super Sib.












A very tender moment when I went to get some tags for the balloon release.




The next one coming up was for a dear friend's baby.  I had hoped to see them when I was back in D.C. in 2011 for my grandparents' internment.


But things got busy with our family, and their family was starting to come down with colds, so it didn't happen.  The day after I flew home, her daughter went Home.  Not getting over to see them has been something I've always regretted.  But we were privileged to be able to send her balloon to her.





Playing with Big Sister at the auction.  Good thing he didn't
have a paddle in his hand.  We would have bought out the place.
Saturday evening was the auction with some incredible things, and then Sunday morning we got up, had breakfast and came home.

All of us were exhausted.  Poor Aaron had to deal with a mama who kept forgetting to either open his oxygen tank or turn it on. By the end of Sunday, he may have been wondering if he needed to trade me in for an upgraded model.  Fortunately, we all slept soundly Sunday night.

I'm afraid I wasn't very good at taking a lot of pictures with the camera, but I sure took a lot with my heart and sealed them away in there.

With all the struggles, heartaches, and loneliness of our journey, it was such a blessing to be in close contact with so many others who experience a similar path.  Sometimes you feel like you're in a free fall, and SOFT (Support Organization For Trisomies and other related disorders) is definitely a soft place to land.

In everyone’s life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. 
~Albert Schweitzer

Tuesday, July 7, 2015

It's Almost Here....

The Four Seasons, by Aaron
Tomorrow, tomorrow!!  It's coming tomorrow!

It's SOFT conference time and I am sooooo excited.  Excited to meet (in person) so many families we've connected with online.

Michael's Firework painting
This has been two years in the making.

We've had so much help getting here.  Friends and family donated to our GoFundMe page which made it possible to go.  We had a sponsor that helped us participate in the SOFT 5K on Aaron's birthday.
Filet Crochet Angel baby

We've been making things for the SOFT auction, and signed up for the Stroll for Hope.  (If you haven't donated and still want to help, you can donate here.)






Filet Crochet Butterfly



Our family's Stroll for Hope theme is going to be All American Boy.  (We thought about doing a Harry Potter "The Boy who Lived" but figured black robes on a July afternoon might be a bit warm.)








The auctions, the Stroll for Hope, and the SOFT 5K all raise money for research and helping families like ours attend conferences like this. This research has helped give kids like Aaron a chance.  It's shown that medical interventions like trachs DO work and our kids not only survive, but thrive with them.

Leather Mouse Pad




Deborah has been making paracord bracelets for the kids to bid on in SOFT colors, red, yellow and blue.

Today Michael and Aaron made painting for a silent auction during the Welcome Dinner on Thursday night.
Set of four leather drink coasters












And I'm hoping I get some sleep tonight.

I think we're ready.  I can't wait.


“The idea of waiting for something makes it more exciting” 

― Andy Warhol