Monday, February 25, 2013

Frontiers of Flight Museum

Another fun February outing was our trip to the Frontiers of Flight Museum at Love Field.  It wasn't crowded, plenty of entertainment for the kiddos, and more than enough flight and war memorabilia to keep Daddy happy too.  Win-win-win!  We may have even found a place for Keegan's birthday party!

Dinosaurs LIVE

The Heard Museum in McKinney hosted a traveling exhibit of mechanical dinosaurs.  They moved and made noise.  Much to our surprise, Keegan loved it!  He waved to the dinosaurs.  He transitioned fairly easily between them, and he even tried to give the T.Rex some of the sticks he gathered as we walked.  Audrey was rather apprehensive, but we had fun nonetheless.  I wish we hadn't waited until the very last day of the exhibit to go!

For some reason, T.Rex's voice wasn't working, but you can see him move in the video below:

January photo randomness

We laid pretty low during the month of January.  Flu season hit pretty badly in our area, and considering we had just come home from an intense inpatient stay, we tried to be as safe as possible.  Here are a few photos I found on the camera from January though.


Birthday lunch for Marley.
(Maya, Keegan, Marley, and Audrey)
Such a sweet face there, Miss A.

Wearing Audrey's ladybug wings

Classic Keegan when you tell him to smile

Sunday, February 24, 2013

GFR and whatnot

Once again I find myself way behind on posts.  Oops.

You may have seen on our little Twitter bar over there on the right last week that Keegan had his annual kidney testing on Tuesday, a GFR.  A radioactive dye is injected into his bloodstream, and then blood is drawn at intervals over several hours to see how much of the dye the kidneys (or kidney, in Keegan's case) have processed.  Over the last two years, Keegan has stayed in Chronic Kidney Disease, stage 3 (CKD3).  We won't have the results for another week or so.  There are five stages of kidney failure, and we are hoping that Keegan will stay where he is for quite some time.

We also had a team meeting with most of Keegan's doctors.  Everyone was pleased that despite some major challenges to Keegan's immune system over the last six months, he has managed to weather each one without a major flare since August of last year.  Our main goal right now is to keep Keegan stable while weaning him off the steroids.  If he stays on the higher doses of steroids for much longer, it will cause permanent growth problems.  He already hasn't had any vertical growth in 18 months.  We don't want that to continue.  It is likely that we will have to increase his anakinra dose even more during the wean.  The remaining genetic testing will likely take at least six more months to a year.  And even then, we may not ever learn exactly what is wrong with Keegan's immune system.  One way or another, his doctors are trying to help him stay as healthy as possible while minimizing complications from over suppressing his immune system. 

The last thing going on with Keegan lately is continued electrolyte imbalances.  His weekly labs are drawn on Friday mornings.  Last Friday was yet another round of labs that weren't exactly what we wanted to see.  We are going to repeat labs again tomorrow morning.  If things are still not great, we may have to add another day of TPN or some IV boluses during the week.  He has been "off" emotionally for the last week.  It is possible that these behavioral changes are a result of electrolyte imbalances, but I guess we'll have to wait and see.

I think that's a pretty good wrap up of Keegan's world lately.  I have quite a few pictures to edit and post, including some of a few fun outings we've had in the last month.  For now, here's a few random phone pics to make you smile.

Happy Mardi Gras!

My two Valentines dates.
Gray was out of town, so we had a little mommy-kiddo date night.
It went very well until Audrey told the waiter he was "cute" and giggled like a preteen.
Oh boy, I'm in trouble with that one!

Entertaining himself with Mr. Potato Head on GFR day.

Princess of the Bathtub

Scootering on a sunny afternoon

 I never believed people when they said Audrey looked like me.
Well, I guess I was, circa 1986.

Keegan on a recent morning.
I was just struck by how grown up he looked.

This morning I ran the Cowtown half marathon in Fort Worth and finally was
able to carry my Beads of Courage.  
Pictured here are the beads I carried (above the number 3), along with one
of Keegan's 29 strands of beads.  He will keep one of the beads I carried today, 
and the other will be given to another child battling chronic illness.
I was honored to carry these today, and I am looking forward to continuing with the 
Team Beads of Courage program in the future.

Thursday, February 14, 2013

CHD Awareness Week wrap-up

It's finally the last day of CHD Awareness week 2013.  You know how the last day of Keegan's first week ended.

With a miracle...

While that first week was finally over, and Keegan's broken heart was replaced with a perfect one, the battle for his life was truly just beginning.  If you have followed Keegan's journey over the last five years, you know that his story is much, much more complicated than his complex congenital heart defect.

I'm somehow amazed every year how much this week of remembrance and advocacy takes a toll on me.  Obviously, having to relive that first week is nearly as harrowing as the first time.  Then, I realize what a big job lies ahead of us in the world of congenital heart defects - research, surgical advances, early detection advocacy, and more.  I remember all the friends we have made on this road.  More importantly, I remember the ones we have lost.  And it's overwhelming.

But we will continue to tell Keegan's story.  We will continue to share the importance of screening for heart defects before birth in order for parents to be able to research options, create a plan, and prepare emotionally.  We will continue to advocate for pulse oximetry testing for all babies immediately after birth in order to give children with undiagnosed defects a fighting chance.  We will continue to remember the angels who have gone before us bravely fighting a war against their own hearts.  And we will be grateful for every day we have together with our own heart warrior.

Wednesday, February 13, 2013

CHD Awareness Week - Day 7

Hanging on to hope.
That's what we were doing on day 7.
It's amazing how strong and fleeting that emotion can be in the same instant.
Luckily for us, our hope came that night in the form of an angel named Johnston.
We were one of the lucky 40,000 families affected each year by
congenital heart defects.  
Hope is necessary in the fight against CHDs, but it's just the beginning.
There is a lot more to be done.

Tuesday, February 12, 2013

CHD Awareness Week - Day 6

Our worst fears became reality on day 6 of Keegan's life.  An echo done prior to an attempted wean of ECMO support showed that a hematoma on the ventrical septal wall of his heart had bled out.  The only way Keegan could survive was if he received a heart transplant.  At his age and size, the odds were nearly insurmountable against him.  I will never forget the feeling of my heart stopping as Dr. G explained it all to us.  She tried to instill as much hope as possible in us, but we could tell she didn't have much to give.  I think today's picture says how we all felt on day six.  The grief was overwhelming.  We were not and could not have prepared for this.  We resolved to surround Keegan with happiness no matter what happened, while we clung to any sliver of hope we could find.

Monday, February 11, 2013

CHD Awareness Week - Day 5

This is what we saw on the morning of day 5.  
And somehow things were ok for just one day...
Knowing now what day 6 would hold, I'm glad we had that one day to enjoy.
This face was worth every second of it.

Sunday, February 10, 2013

CHD Awareness Week - Day 4

On day 5, we finally started to see Keegan move his little hands and feet and were waiting anxiously for his eyes to open.  Our biggest concerns were his kidneys, his lungs, and his brain.  Keegan was officially listed as a status 1A on the transplant waiting list, although at the time we hoped it was precautionary.  If his kidneys did not recover, his lungs continued to leak, or his brain continued to bleed, that last hope of transplant would be gone.  The waiting seemed endless.  Like we were lost in a time warp with days and nights that bled into each other.  Our previous lives seemed so far away, and our future completely uncertain.  I remember sitting on the hospital bridge overlooking the freeway with my dad early that morning, watching the cars sped by on their way to start another day.  I realized for the first time that a congenital heart defect had changed my life forever.  No matter what happened from here on out, things would never ever be the same.

We were not and are not alone in that living nightmare.  For the families of one out of every 100 babies born this year, it will be their reality.  For some of those, the nightmare will never end; their child will lose the battle with a congenital heart defect.  We thank God for every day we wake with Keegan by our sides, and we pray for the comfort and healing of every parent who does not.

Saturday, February 9, 2013

CHD Awareness Week - Day 3

Keegan on ECMO at three days old

This picture doesn't require much annotation.  Day three of Keegan's life was spent processing what new world we found ourselves slogging through.  None of us remember much other than just the intense struggle just to keep breathing.  We still had not had the chance to even meet Keegan yet.  What color were his eyes?  What type of personality did he have?  Did he know where he was?  Was he in pain?  Did he know his family was around him?  Would he recognize my voice?  Even know that I was his mother?  We did not know if he would wake up, come home...  Day three was about survival.  Luckily, he did.  And we did.  At least for one more day.

Friday, February 8, 2013

CHD Awareness Week - Day 2

Today is day 2 of National Congenital Heart Disease Awareness Week.  Day 2 of Keegan's life was September 13, 2007.  Over 12 hours of that day for Keegan were spent inside the cardiac operating room trying to fix a heart smaller than a walnut.  For us, those hours were spent on a roller coaster ride that was just getting started with a very rocky start.  We were told to anticipate a 5 to 6 hour surgery.  Despite the surgeons' best efforts, Keegan's heart would not work properly.  He was placed on a type of life support called ECMO that oxygenated and circulated his blood for him.  

Our hope was that Keegan's tiny body needed time to rest and respond to his repaired heart.  He was also born several weeks early, and it was possible that his lungs needed a little time to catch up.  We soon would find out that neither of those best-case scenarios existed for him.  But on this day in 2007, we were grateful that he was alive, no matter what it took to keep him here.  

The machine on the right is the ECMO circuit.
I am in the foreground on the left with Keegan in the incubator in front of me.
This was taken shortly after we were able to see him for the first time.
Keegan had the biggest room in the cardiac ICU, but with all the equipment, 
that desk chair in which I'm sitting was the only place to sit in the room.

*I want to give some warning that tomorrow's picture will be fairly graphic.  Please view with caution. It is one we originally did not share, but I feel it is an important part of Keegan's story.