Sunday, April 6, 2014

Rough day

I was hoping to have posted about our amazing night with Team K's for Keegan at the Firefly Run last week.  Instead, I'm posting about our day-long visit to the Legacy ER.  It was a rough day, but it did have a happy ending with all four Harrisons in their own beds, not Hotel Children's.

Last Saturday (yes, the morning of the Firefly Run), Audrey woke up with a lovely little fever.  With a brother like Keegan, there is no luxury of giving ibuprofen and waiting to see what happens.  We took her to the after-hours pediatrician for a flu and strep swab and left with a diagnosis of Fifth's disease, a common childhood virus that causes fever, a slapped-cheek-looking rash, and mild respiratory symptoms.  It's supposed to be a virus you only get once, similar to chicken pox, but Keegan has had it at least twice in the past due to his wonky immune system.  The best part of it, as with most viruses that cause fevers, is that the contagious period is before the fever and rash appear.  Great.

True to form, Keegan started a low grade fever Wednesday night while Gray was out of town for work.  Standard protocol for a fever when you have a central IV line is to run cultures on the line and be admitted for 48 hours of antibiotics, in case it's a line infection.  The medical team allowed me to give Keegan tylenol and keep him home this time, as we knew he had been exposed to a virus.  By Thursday afternoon, his fever was gone, but he was pretty miserable with the respiratory symptoms.  Still, we thought that he was doing very well, considering viruses generally trigger MAS flares.  Yesterday, he had a a difficult day GI-wise, again not unusual for Keegan.  No red flags yet.

This morning, Keegan tanked on us so quickly, we hardly saw it coming.  No color, retching, moaning and saying he needed to go to the hospital.  We gave him anti-nausea meds to no avail.  After throwing up, he sort of spaced out and mumbled here and there about an ambulance and #8 (the eighth floor at Children's, the cardiac unit).  He didn't feel warm, but on a whim, we ran his vitals again.  And again.  And again.  Keegan is hypertensive and on three blood pressure medications daily.  His blood pressure dropped significantly to a dangerously low level, and the team told us to take him to the Legacy ER immediately.

Of course, he perked up when he got to the hospital, and blood pressure came up a bit.  Ran a chest x-ray, labs, urine and blood cultures.  All the while, Keegan is begging to just get in the ambulance to #8, even though he had regained some energy.  His labs were pretty off, so they decided to give him some IV fluids and see if he could tolerate some solid food.  The fluid bolus helped his labs come back together and bring his blood pressure back to his normal.  Cultures are still pending on his line for 48 hours, so we're not out of the woods yet.  But for now, we are home.

What happened today is anyone's best guess.  Maybe he had a strange reaction to the virus because he doesn't have a normal immune system.  Maybe his intestinal failure got the best of him without TPN to keep him balanced (no TPN on the weekends, just IV magnesium).  All that really matters is that we ended up safely back at home for now.  We will be watching him closely and seeing what happens over the next few days, but we are praying that he will start to rebound more every day.



Thank you so much for lifting him up once again in prayer.  Today was scary, but it also went better than 90+% of his other ER trips.  That's the power of prayer for ya!

Wednesday, March 19, 2014

K's for Keegan catch-up & reminder

As apparently is my habit lately, here we are in late March, and I am finally putting together a quick K's for Keegan update after two marathons and the first triathlon of the year so far.  I would apologize, but I would doubt anyone expected any more from me at this point in my lackadaisical blogging.  Let's attempt to bring this thing up to speed.

In January, I ran the Houston Marathon.  A dear friend gifted me with a Run for a Reason charity bib through the National Kidney Foundation after the Dallas Marathon was cancelled.  The day was warm, and the race was well-organized.  I was able to catch the whole family, including the kids, at mile 14.  Gray and Alex's friend, Matt, found me again at mile 21, and then everyone was there at the finish to cheer me on.  Considering I had been training for over 20 weeks by that point, I hoped to have done better, but for a first-timer, I will take it.  Keegan crossed the finish line hand-in-hand with me, and that is a moment I will treasure for the rest of my life.



Hugs from Keegan over half-way in

Sure helped to hear these two yelling, "run, Mommy, run!"

Crossing the finish line together





The biggest surprise of the day came shortly after the race.  LaMonica, Keegan's donor's mom, happened to be in her hometown of Houston with the kids, and she came to surprise us at lunch.  Such a blessing and the perfect way to celebrate together!  

Then, it was only four short weeks before the Cowtown Marathon, and I threw in 15K in between.  Gray and I were able to make it to Fort Worth the day before the race and spend some time with two of our best friends, the Currys.  26 miles was a good way to spend my 34th birthday.  I know watching me run probably isn't Gray, Marci, or Todd's idea of spending the morning in FW, but it's been a tradition that means a lot to me.  Next year, I have my eyes on the ultra for my 35th!

I am still a proud member of Team Beads of Courage.
I carry beads with me for every race, and they remind me 
of the strength that Keegan and every child like him exhibits daily.
If they can do it, so can I.


I love the Cowtown race because I'm a bit of a lone-wolf runner.  I like that it is smaller and older.  It gives it a more personal feel.  However, the old-school ways sometimes come back to bite you.  Since Cowtown was the only local marathon after the Dallas cancellation that still had open registration (remember that Houston has a lottery that fills up immediately; I ran on a charity bib), the race was completely overwhelmed this year by the influx of refugee runners from Dallas.  I felt the strain after handing my gear check bag over at the chaos in the sheep barn.  I realized a few minutes later that I had accidentally checked my fuel belt with half my fuel, all my electrolytes, and my precious kleenex (I had been battling a raging sinus infection, fun times).  Since they don't organize bags at the check right away like bigger races, we couldn't find my bag.  With the world's most sensitive stomach and an unseasonably warm day, I left to run the marathon with only two gels and no electrolytes.  I made it through, mainly due to my awesome hubby and friends forcing me to stay positive and driving all over FW to hand me kleenex and encouragement. 

With the year's first two marathons under my belt, it was time to switch gears for the start of triathlon season.  We had a nice warm week, but then old man winter decided he wanted to rain on my parade one more time.  Literally.  On Saturday, a nasty cold front brought in a good amount of rain and wicked high winds, sustained at 25mph and gusts near 40mph.  Not the best conditions to be riding in while wet.  I buckled down and survived, managing to score an early spot at the end-of-the-year sprint invitational and placing 3rd in my age group on the run.  I almost ate it twice on the bike when the winds truly threatened to knock me down, and I learned my lesson on overestimating my swim time.  I will not let myself get stuck in a slow pack of swimmers again.  Oy.

Trying to block out the fact that I'm about to jump in a pool,
then run out soaking wet into 40 degree temps and 30mph winds.

I was pretty happy with the layers that I chose to get through,
especially compared to some of the other yahoos out there that didn't!
I do HIGHLY regret forgetting my toe covers for the bike.
The run felt like I had bricks for feet until mile 2.8,
when unfortunately there was less than half a mile left to go.


Wow, that's a rough picture.
I am not a beer drinker, but Gray truly deserved it after sticking with me during this one.
I would be lost without him.

Well, that catches us up on the year so far, but the most important race is coming up on the 29th.  That would be the Firefly 5K where YOU have the chance to officially join Team K's for Keegan.  We have a great team signed up so far, but we are always looking for more.  The Firefly is a night race where everyone wears glow-in-the-dark stuff to light it up and raise money for Children's Medical Center.  If you would still like to order a K's for Keegan tshirt, please let me know that also.  I must place the order by this FRIDAY, MARCH 21!!  Comment below or email me with questions.  

Please consider joining us and register today!


2014 is off to a pretty good start.  There's still plenty of work to do and lots of opportunities to spread the word about the importance of organ donation through K's for Keegan.  Thank you for your support and encouragement!  You keep us moving along!

Wednesday, March 12, 2014

Scripting

Last week, Ron Suskind published an article entitled "Reaching My Autistic Son Through Disney" in the New York Times ahead of the release of his new book, Life Animated.  I am anxiously awaiting my chance to read it and have read his NYT article several times now through tears.  Please take the time to read it by clicking above because it will reveal something to you, even if all you know of our family is through this little blog.

This is Keegan.  

98+% of Keegan's speech is scripted from movies or tv shows.  Disney is by far his preference, but he won't turn down most good animation.  Most of the remaining speech is from scripts we have given him, i.e. giving him the words to ask for a glass of water, which he then repeats in the exact intonation we taught him originally.  

I will never forget the day when he was about 3 1/2 years old we realized Keegan's gibberish was actually words.  Monsters, Inc. was playing on the tv, but Keegan was facing the other direction.  He made sounds we had heard him say often at the time, "tees e a oo ed, ooh ahh ooh ahh ooh ahh."  But this time, without facing the tv, we watched him mime the scene with the sounds perfectly.  It's when Mike is training Sully in the morning before work.  "Twins in a bunk bed!" Then Mike mimes scaring kids in a top bunk, bottom bunk, back and forth, before falling flat on the floor.  Gray and I froze.  "Twins in a bunk bed!"  We rewinded it and played it again, and Keegan did it again and again.  

After the strokes and macrophage activation flare in September of 2011 that left him practically in a coma and robbed him of the little speech he had developed, he sunk deeper into his scripts.  Three months later, he received an autism diagnosis.  He technically has brain damage from medical trauma that mimics autism (each characteristic can be tied directly to an event on his brain scans), but the same treatments for autism work for Keegan, which is really all that matters.  At that point, I began to fervently research scripting and echolalia.  We were desperate because the only time Keegan was happy was watching his movies.  Even when he wasn't watching, there was a constant movie playing in his head, and we could rarely pull him out of them, back into reality.

A few months later, I tried jumping into one of his scripts from the movie Cars.  His speech was still mostly sounds and inflections with a few discernible words, but when you watch the movies as much as we do, you pick up on the inflections and context.  I don't remember what line it was now, but before Keegan could say the line, I knelt beside him and said it myself.  He looked me square in the eyes fully for the first time since that flare.  And he smiled.  His HUGE, beautiful Keegan smile.  We exchanged a few lines, and he regressed into a different script that I couldn't follow.  I sat and cried as he played around me.  It was his breakthrough.  The more we identified the scripts he was saying, the more we were invited into his world.  To this day, I must stop what I'm doing whenever I am doing it to be Pumba to his Timone singing "Hakuna Matata."

Keegan has not progressed nearly to the levels Owen has over the years, but I am hopeful for more as he grows, especially if we continue to learn with him.  Already, he has moved on to using his scripts in context when he needs to convey a need, want, emotion, or desire.  If he needs help, he doesn't just ask for help.  He is Pete in Mickey Mouse Clubhouse, "umm, guys, a little help here?"  But sometimes, his scripts are just a source of comfort for him.  A safe place he can go to escape.  TV or digital device unnecessary, there's always a movie playing in his head.

Now I have a clearer understanding of why.  Ron writes in the NYT article:
"But what draws kids like Owen to these movies is something even more elemental. Walt Disney told his early animators that the characters and the scenes should be so vivid and clear that they could be understood with the sound turned off. Inadvertently, this creates a dream portal for those who struggle with auditory processing, especially, in recent decades, when the films can be rewound and replayed many times.  The latest research that Cornelia and I came across seems to show that a feature of autism is a lack of traditional habituation, or the way we become used to things. Typically, people sort various inputs, keep or discard them and then store those they keep. Our brains thus become accustomed to the familiar. After the third viewing of a good movie, or a 10th viewing of a real favorite, you’ve had your fill. Many autistic people, though, can watch that favorite a hundred times and seemingly feel the same sensations as the first time. While they are soothed by the repetition, they may also be looking for new details and patterns in each viewing, so-called hypersystemizing, a theory that asserts that the repetitive urge underlies special abilities for some of those on the spectrum."

But I worry about what I may hear from him one day.  Ron learned that his son, Owen, felt left behind when he identified himself as a sidekick to the hero in a Disney movie.  Or when he finally revealed how lonely his world could be by talking to his dad impersonating another sidekick, Iago, from Aladdin, "I'm not happy.  I don't have friends.  I can't understand what people say."  Are these emotions I am ready to hear from Keegan?  No, I don't think I am.  They are things I have feared and grieved, especially this year as all the neighborhood kids have gone on to kindergarten without him.  In his Disney-filled world, he is happy.  He is safe and full of emotion.  But when the movie is over, I'm afraid of him feeling lost.  He has endured so much more than any other six-year old should have to endure.  He has come out fighting each and every time.  I have guarded his physical heart and his health with every breath of my body.  I'm not sure how well I can guard him from the emotional pains of reality if we continue to break into his world or bring him out into our own.

Each month, we are seeing progress from Keegan though, and his scripts continue to be a large part of that success.  Perhaps he does watch too much television and movies.  But I wouldn't trade it or him for the world.

Tuesday, February 25, 2014

Friday, February 21, 2014

Sickies

Always overdue for an update around here.  I'm getting ready for the Cowtown Marathon this weekend, and I just realized I never did a full post on the Houston Marathon.  Oy.  We managed to make it through a rough week in health for both the kiddos this week, which followed tightly on the heels of yet another sinus infection battle for me.  We could be in a much better place going into the weekend, but we are praying the sickies are on their way out.

Keegan took a nosedive mid-week, but we believe his was caused by some medication changes we made recently.  Without much thought, we weaned his steroid dose and increased his oral magnesium dose nearly simultaneously.  It caused a big increase in his GI difficulties, and by Wednesday, he was nauseous and exhausted.  We backtracked on his mag dose, started some nausea meds, and took some time to let him rest.  By today he was back to his old energy levels, but unfortunately, his nose started running too.

Then there's Audrey.  She had been battling a runny nose for weeks and developed a wet cough over the weekend.  I talked to the pediatrician early in the week and was told not to bring her in.  Then I got the call around lunch today that she had a fever and needed to be picked up from school.  Luckily, she just has a nasty ear infection.  The doctor warned that this type of infection may be contagious and to watch Keegan closely, but we are hoping that the start of antibiotics today will help nip this thing in the bud before it affects him.

What a way to end the week when I was planning to travel over to Fort Worth for a race.  So if anyone could spare a prayer that the sickies are on their way out of the Harrison house, we would greatly appreciate it.  We are extremely grateful that we have thus far been able to weather all this at home, and we simply are praying to stay here.  Thanks as always!

Tuesday, February 11, 2014

CHD Awareness Week & DallasMomsBlog guest post

Here we are again in National Congenital Heart Defects Awareness Week.  I have no great posts in me for this year, but I did put some thoughts together recently in a guest post for DallasMomsBlog.  You can find it by clicking HERE.  Should you be looking for more information on CHDs, feel free to use the search function on the right-hand sidebar to search for my previous posts during this week.  CHDs cannot be prevented and affect 1 in every 100 babies in America.  There's not much we can do to change that, but we can remain educated on how to detect them, to spread awareness, and pledge to support research for treatment.  Maybe one day we can change that.


Sunday, February 9, 2014

"Snow" Day

After some epic ice storms in North Texas this year and way more than usual days of sub-freezing temperatures during this past winter, we finally got some snow.  And when I say some snow, I mean that quite literally.  While the rest of the country has been blanketed in snow, this was the extent of what we have received thus far.  Audrey woke up early, saw the little amount of snow, and came running in my room exclaiming, "it's not ice; I won't slip!"  I couldn't deny her a little bit of time playing in what we could.  I have plenty of other things to post about that I will hopefully get up in the next few days, but here are our "snow" pictures for today.

Two years ago after a few snow-heavy winters, my mom bought snow suits for the kids,
as she felt they would get to play more with proper clothes.
I warned her that with our luck, purchasing snow suits would keep snow away from
our area for at least a decade.
Seems I was right.

I guess we can at least say the entire outfit was worn once!
Unfortunately, they both outgrew the boots, but rain boots work well enough.

Audrey's first snow angel.



"It's a [sideways] snow Keegan!"

Drawing in the snow

video
Snowball fight!

Sunday, February 2, 2014

Annual cath and biopsy

On Thursday, Keegan was admitted for his heart transplant "annual", which includes a heart catheterization, angiogram, and biopsy followed by an echo, EKG, chest x-ray, and labs.  It's always a long and gut-wrenching day, no matter how well a child looks on the outside.  Keegan may not be in the best of health, but by all indications, we had no reason to think we would find anything wrong during his annual.  We have been in the transplant world long enough to know that looks don't mean squat.  Cath results are very telling, and biopsy is king.  Lest I scare you in that introduction, Keegan did get a good report this year.  His biopsy results came in with a 1R, which is a low-level and "acceptable" level of rejection with no treatment required at this time.

The day went much smoother than any other annual day we've ever had with Keegan.  He was scheduled as first case of the day.  We arrived at 7am with a Bug that was happy to be at his "big hospital" for the meantime, even though he was already asking to go to "[his] room on number 8".  Even though we know/assume that he begs to go to the cardiac inpatient floor because it's part of his routine (a sad statement in and of itself), it still is quite unnerving to hear, in case he's actually trying to tell us something.  He was quite chill in pre-op, was in the cath lab by 9:45am, and we were able to see him in the PACU by 10:55am.  They had to go in through his groin again in order to not mess with his central line at all.  Keegan's heart pressures were fairly stable from last year, and the team did not see any blockages or evidence of vasculopathy at this time.  Whew!

Then came 4 hours of trying to keep him (a) calm, (b) flat, and (c) leg straight for 4 very long hours.  The begging for the inpatient floor ramps up to a fury by the time he wakes up.  Anesthesia gave him some extra juice to help him sleep a little longer, and we ultimately had to give him some extra fentanyl and anti-nausea meds to work through it.

Trying to chill during the wait
We were thankful for a nurse that was willing to let him cheat a bit by lying on his side.

He started to get really antsy by three hours in and battled more nausea than he usually does post-anesthesia.  Then all of a sudden, he relaxed, ate a little bit, and said he was ready to go home, not the inpatient floor.  His chest x-ray, echo, and EKG were all stable.  Labs weren't too messy this week; nothing out of the ordinary, at least.  And finally, the biggest miracle of all?  We were discharged before rush hour traffic!!  For once in our lives, we were home before 5pm!  We were able to get Audrey back home and spend the evening together as a family.  Amazing and such a blessing!  Well deserved after 6 years and nearly 60 rounds of anesthesia!

Now if he had not broken out in hives later in the evening, it would have been a pretty great day, as far as heart transplant annuals are concerned.  Some benadryl, tylenol, and hydrocortisone helped ease his discomfort though, so that little hurdle was cleared.  We are hoping the hives are an anomaly, since he is already allergic to morphine.  An allergy to fentanyl would be a kick in the pants, surely.  

On Friday, we received the news that his biopsy results were 1R.  I thought that Keegan had a 1R result at least once before when he was younger, but I couldn't find that in a search of the blog.  It's not the most hoped for result of 0 rejection, but according to the team, a 1R isn't a far cry.  There is no treatment required for it.  As a mom, even a 1R can be hard to swallow, but we will take it and run for now.  

Overall, it was great to start 2014 off with a good assessment of where Keegan's health is, and to know that considering where he's been, we are sitting pretty.  Thank you for continuing to keep us in prayer.  Throw a few our way in regard to our insurance fight too, if you feel so inclined.  Luckily, Keegan has secondary Medicaid, but this riff with United is still a drain and important to beat for the long run.  Thank you again, friends.  Stay warm and safe out there!  More soon. 

Thursday, January 23, 2014

Still here

Yes, we are all alive and still outpatient at home.  Remember for the most part "no news is good news" when it comes to Keegan.  Not sure we have that many followers on this little blog anymore, but of those of you left, I hope we didn't worry anyone.  I haven't updated because there hasn't been much to say lately.  Keegan has been fairly stable on his current IV regimen with TPN four days per week and IV magnesium infusions the other three days.  We had an appointment with his rheumatologist yesterday, and she was very happy with how well Keegan has been doing lately.  We are marching along with weaning his steroids and hope to be off completely if he makes it through the next few months without incident.  We are still waiting on the genetic mapping to be finished, trying to be as patient as possible!

That's about all the facts there are to update about, which I suppose is why I haven't posted anything lately.  The kids are back in full swing with school, therapy, and appointment schedules.  All of that keeps us busy enough, not to mention my attempt to work more hours doing contract legal work in order to help the family finances.  We're also dealing with a giant insurance battle over Keegan's IV medications, which has been taking up every spare second and more lately.  It's not all been work though.  Last weekend, we traveled to Houston with my parents and sister so I could run the Houston Marathon.  When the pictures are all ready, I will post about it.  Not my best race, but it meant the world that my family was there to cheer me on.  Keegan crossed the finish line with me.  It's a day I will always remember.

I apologize again for the lapse in posts and the lack of true content lately.  It is difficult to explain to someone who doesn't live it every day, but sometimes the stretches of Keegan being stable are the hardest emotionally, living with the feeling of the other shoe about to drop at any moment.  I'm working hard on getting over that and coming to grips with where we are on this journey and what lies ahead.  I can't say enough how much I appreciate each of you who has continued to keep our family and Keegan in your prayers through it all.  We have learned over the years to "ride the waves".  A period of good times doesn't mean a bad one isn't around the corner, but we continue to pray and make the most of every moment we can.  Thank you for riding along with us.  More to come soon.

Tuesday, December 31, 2013

Christmas craziness

We were blessed to spend Christmas at home this year, and we definitely tried to make the most of it.  The Lord laid heavy on our hearts to take advantage of every moment and make some memories together as a family.  I had no intention of sharing all these pictures, but there are some of such joy that I couldn't limit them!  We spent Christmas Eve with my family, Christmas Day at home together, and the day after with Gray's family.  In between, we saw a lot of Christmas light shows, went ice skating in downtown Frisco, and saw Disney Live! with Aunt Alex.  It's been crazy busy.  Good crazy, and I like it.

Christmas Eve

Foosball time

Bitty Baby love 

My favorite moment of the night.
Audrey jumping up and down, yelling "thank you", and jumping into my arms!

Silly happy hat dance
I can't get enough of this toothless smile!!

If I only had a heart!

Spreading out her reindeer food rather apprehensively

Keegan participated with the reindeer food this year,
a happy turn of events.

Setting cookies out for Santa.
She was so excited to see that he had eaten some of them in the morning!

Tracking the Big Guy

The loot!

A good big brother, holding Bitty's hand as they got up on Christmas morning.

Say cheese!

The Scare Floor from Monsters Inc was the one thing he asked 
by name for Santa to bring.

 I can't believe I'm including this picture of us, 
but the kids are so true to form in this one.

Audrey beat Daddy in the first two games of Candyland.

Trying out our new roller skates.

New Infinity characters from Oma and Pops.
They have not stopped playing with them!

A very merry Christmas to you!
May your new year be filled with all the Lord's blessings!