Monday, April 29, 2013

Transplant picnic


On Sunday, we attended the annual Children's solid organ transplant picnic.  We missed last year because Keegan was inpatient at the time.  Three years ago, I went into labor with a little spunky miss during the picnic.  This year was much calmer, and we all had a lovely time.  Smaller crowd this year, and only two of our heart friends were there, little Brynn (in blue at left of front row, waiting on her second heart) and baby MacKenzie (in her big sister Grace's arms on the right in matching dresses).   This is the only picture I was able to get due to a camera issue, but this group of amazing miracles is enough of a post all on it's own.  Don't you think?

Tuesday, April 23, 2013

Finally what you've been waiting for...


Have I put off a substantive update about Keegan long enough yet?  Yes?  Ok.  I apologize for the delay, but it is for the most part a no-news-is-at-least-no-bad-news kinda thing. 

To start off with, Keegan's heart is A-Ok, as usual.  We had a quarterly transplant clinic appointment last week with echo, labs, and doctor visit.  It’s always good to hear that his heart function is great and stable.  No concerns at all there.  It’s the rest of his little body that always throws us for a loop.

We have successfully weaned down another milligram of steroids.  Keegan will only have about four more months of them if he holds on this pattern without incident.  Starting with the next wean, we will likely increase his anakinra to give him extra coverage from a flare with the reduced amount of steroids.  That will be the equivalent of two full adult doses per day.  Luckily, there are few side effects of anakinra.  However, it locks us into using a central IV for the foreseeable future.

We met with the immunologist last month.  She gave him some vaccination boosters to try to increase his protection from certain strains that he didn't respond to initially, and we also gave him a dose of a special pneumonia vaccine that children don't usually get.  This was two-fold.  This vaccine is for a saccharide-based bacteria.  By giving him the vaccine and then testing his response a month later, we were able to (1) protect him from this bad strain of pneumonia and (2) see if his immune system can respond to especially dangerous saccharide-based bacterias.  Thankfully, we got good news on both fronts!  He had a good response to the vaccine, which gives us such peace of mind.  

We have a follow-up appointment with the neurologist in two weeks.  We're anticipating that will be another good report with stable news.  His teacher recently did some informal standardized testing in order to prepare for a meeting with the school district to plan for kindergarten (yikes!).  Keegan placed in the 32-40 month age range in social/emotional and communication, and on the low side of average for his real age range in cognitive skills!  That means that while he has difficulty expressing himself and engaging with others or attending to self-help needs, he understands things on a level consistent with other five year-olds.  This is a full year better than where he placed in January of 2012.  He will have a formal evaluation by the neuropsychologist again in July to get more solid numbers, but we couldn't be more thrilled.  Keegan has worked hard for that progress, and it shows.  As for kindergarten, the medical team, the school, and Gray and I all agree that he needs to be home-bound for at least one more year due to his immune suppression.  He would have been in a resource room alone for all core subjects anyway, so keeping him home makes even more sense.  Next year, he will continue with his current special education teacher (yay!), but he will have 4 hours of in-home teaching, instead of just 2 hours.  Hopefully, we will learn more about his genetic immune deficiency and get him off steroids during the coming year, which will help him feel better, learn better, and have a better chance of leaving home for school by first grade.

Our biggest problem lately has been getting his electrolytes stable, mainly his magnesium levels.  His potassium and sodium have been ok as of late, but his mag and phosphorous are chronically low.  The mag is the one of most concern, as low magnesium can cause heart arrhythmias.  In a denervated heart (the electrical pathways of the heart are cut during transplantation), arrhythmias can be dangerous and difficult to correct.  Unfortunately, the main anti-rejection medication, tacrolimus, inhibits the absorption of magnesium in almost all patients.  Keegan has always had low levels, and for the most part, we’ve been ok with it, as he didn’t have too many ill side effects of the condition.  At least, so we thought.  The few days that we were able to get his mag levels even a touch higher than his normal levels (nowhere near normal), his teacher and therapists all consistently noted that he behaved better, was more cooperative, and concentrated better in sessions.  This prompted us to believe that even though he seemed "ok" at these chronically low levels, he would be better with higher ones.

However, lately his levels have routinely dipped to “critical” levels.  The doctors first increased his TPN to three nights per week. Then, the TPN was stretched from 10 hours to 12 hours.  We completely maxed out his oral dose of supplemental magnesium.  Finally, we gave him a few doses of IV magnesium here and there.  We checked his kidney function, but it didn't seem he was wasting an excess amount via his urine.  When nothing else worked, the team decided to bring him into the hospital for IV mag every Tuesday and Thursday.  After the first week, his levels were still low, so know we're increasing his dose...again.  Our goal is to get him at least close to normal.  So, it looks like this will be our new routine for a few months.  If it works long term and he tolerates the infusions well, we will eventually be allowed to administer them at home.  
Of course all this fluid has him a little on the puffy side, but that's a small price to pay for now.  Regular labs will be drawn on Friday, so we'll see if all the work is even helping him at all.  He has been sick with a cold that his sister brought home.  It's been a little hard to tell how he's feeling other than that, but the snot seems to be subsiding now.  We are hopeful for a break for our little buddy soon.

I again apologize for the delay in posts.  Sometimes things aren't really black-and-white, and I'm not sure what to update about, if anything.  Sometimes I don't want to jinx a good stretch.  More often than not, I'm exhausted by the time I sit down, and I really just don't want to dwell on it all.  I've said before that it seems hardest to grapple with everything when things are stable, when you have time to actually think and react.  I have a million excuses to throw out.  At any rate, thank you for sticking with us through it all, thick and thin, stable and not.  It means the world to us.

And to show our appreciation, a little entertainment for you:






Saturday, April 20, 2013

A very special Stars Game

Last fall, Aunt Alex gave Keegan a very special gift: tickets to his first Stars game and a chance to ride on the Zamboni in between periods.  When the strike was over, she made it all come together.  I wasn't able to attend due to my lovely sprained ankle keeping me in an orthopedic boot and crutches, but Keegan, Gray, BD, Aunt Alex, and Cody had a night to remember cheering on the Dallas Stars!

Keegan and Aunt Alex

Gray, Keegan, Big Daddy, Alex, and Cody

BD and Keegan getting ready to ride the Zamboni

The Stars staff was awesome and bent the rules to let Gray ride
with Keegan, considering his anxiety and medical issues.
Somehow, I don't think Gray minded.  ;)

Keegan really did well overall.  

A little overwhelmed but staying calm

Waving to his adoring fans!


At the end of the night, the Stars beat San Jose to win a playoff spot.  We know it was Keegan's presence that spurred them on!  Thanks again, Aunt Alex, for a night Keegan will always remember.

Monday, April 15, 2013

Pray for Boston

I had planned on an update tonight on Keegan's transplant appointment and other family happenings, but right now, there is only one thing occupying my thoughts.

Boston.

I am struggling to sort out all my feelings, let alone put them in print at the moment.  They are coming from every aspect of my life.  As a runner.  As a mom.  As an American.  As someone who loves the city of Boston and all the hope it has provided our family.


My mind constantly flashes back to four years ago today.  Our apartment at the time was on the corner of Mass Ave and Boylston.  The finish line of the Boston Marathon less than a quarter mile down the street.  Gray, Keegan, and I literally stood right on that corner under the country flags to watch the elites come in on Patriots' Day 2009.  It could have been us.

Keegan and I in 2011 across the street exactly from today's tragedy.

As a runner, Boston is the epitome of our sport.  It is more than a marathon.  For many, it is the culmination of a lifetime of pain and perseverance.  Race day is a beautiful symphony of people pushing their own limits, honoring others, and coming together to rise above.  As Katherine Switzer, the first woman to ever run the Boston Marathon, once said, "if you are losing faith in humanity, go out and watch a marathon."  

My heart is grieving tonight for so many reasons I have yet to sort through.  First and foremost, I grieve for those lost and injured tonight, especially for the parents of the young boy among the casualties.  For everyone who was present today and everyone who responded.  For law enforcement working tirelessly to find answers and medical staff caring for all involved.  For every runner who is safe and for every runner whose dreams and security in their sport were shattered today.  May you each find healing and peace during this time.

Tonight as I put Keegan to bed, only one song came to mind.  As he fell asleep, I cried but continued to sing.  This has provided both of us comfort in times of need, and I hope it does for all in Boston tonight.  

You who dwell in the shelter of the Lord
Who abide in His shadow for life
Say to the Lord, my refuge
My rock, in whom I trust

And He will raise you up on eagles' wings
Bear you on the breath of dawn
Make you to shine like the sun
And hold you in the palm of His hand

For to His angels, he's given a command
To guard you in all of your ways
Upon their hands, they will bear you up 
Lest you dash your foot against a stone

And He will raise you up on eagles' wings
Bear you on the breath of dawn
Make you to shine like the sun
And hold you in the palm of His hand

-On Eagles' Wings

Tuesday, April 9, 2013

Mouse-ker-size

I have a lot to update about, but I've been a bit sidetracked with another stint on crutches, among other things.  Yep.  Fun times.

In the meantime, I had to share this gem with you.  Keegan following along with a Mickey Mouse-ker-size episode while waiting for his TPN to finish on Saturday morning (his IV pole is behind him still).  Turn it up and watch closely to see him play the Simon Says like game.  Not only is it cute, but it's amazing how closely he is following instructions, something that is so very, very difficult to do in real life.  I love it.

video

Tuesday, April 2, 2013

Time for Eggs is Easter-time!

The first major holiday of 2013 was spent at home!
We kept Easter weekend low-key, family-focused, and home-bound, 
and it couldn't have gone better.

Saturday was spent at Oma and Pop's house with egg hunt #1.
As has been his want the last few years, Keegan prefers to gather eggs sans basket.

"I see it! A yellow one!"

"Come here, puppies! I have bubbles for you."
Poor Jack and Oso endured Audrey's "attention" like champs.

Finding more eggs with Pops

Daddy and Keegan opening their treasures.

No church again for us this Easter Sunday.
Somehow I believe God understands the need to keep Keegan out of the crowds.
Hopefully, he will be in a better place by next year and able to return to church.
Surveying the loot from the Easter Bunny

Opening presents from Aunt Alex
To be specific, Audrey is opening Keegan's present.  
She is a bit of a present hog.

These Monsters Inc. characters are his new obsession.

Looking closer


After the Bunny's baskets, we went to Mamie and BD's house for egg hunt #2!
Posing with Aunt Alex

One day they will both smile for the camera, right?

Making funny faces with Mamie and BD

Lovin' on Poppy and Chum

Chillin' with Poppy while Audrey napped

"This one is poi-pul!"

In addition to not using his basket, Keegan prefers to open as he goes.

Cascarones!!

Confetti hair

Full baskets, cheesy faces



We hope you each had a blessed Easter!