Monday, April 30, 2012

Line infection

Just when you think it can't get worse, Sunday's culture also grew back. Keegan does have a line infection. I will update more tomorrow. There are a lot of decisions to make right now. If there is a worst time for a line infection, this is it. Thank you for every prayer sent Keegan's way.


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Sunday, April 29, 2012

Tea party

Audrey threw a little tea party for her babies while I packed up our bags for this hospital stay.  These pictures were too cute not to share tonight.  Hope they bring a smile to you the same way they did for me!  This just tickles me to no end!  Keegan still has not developed to the "pretend play" stage (a handful of times here or there with prompting only).  I know this is completely typical for this age, but I still am in awe.

The first two guests to arrive were a mignon (from the movie Despicable Me, of course) and Baby Stella.  And yes, her shoes are holding Baby Stella up.  This was a big ordeal until Mama found a way to prop her up.  Not old enough to sit on her own but old enough for tea, evidently!

Minnie joined the party shortly thereafter.

"Here Minnie, let me help you with that."

The hostess with the mostest!

Olivia was a little late for tea, but Audrey saved some sweets for her.

"Has everyone enjoyed their tea?"

"Oh good, still some for me!"


On second thought

A call from the transplant team at 5:30am on a Sunday is never good.  Evidently, the culture from yesterday grew back positive too.  It's quite confusing due to the nature of the specific organism that keeps growing out, but we are hoping that it is yet another contaminate.  (Yes, we obviously have issues with inconsistent blood culture draws.  Another issue for another time.)  To be safe though, we were asked to take Keegan immediately downtown to be admitted and start treatment for a central line infection.  Not exactly the lazy Sunday morning we were hoping for, and Keegan certainly did not appreciate being snatched out of bed at that hour.

The good news is that Keegan looks fine.  He obviously does not have a bloodstream infection, even if his line is in trouble.  Additionally, his blood counts have tanked per what looks on paper like an MAS flare, whereas if he had a bacterial infection, his white count should increase dramatically.  We are talking about Keegan though, and he never plays by the rules.  The line is a very serious issue though, especially considering the big gun drugs we were about to start.  Today was a scheduled needle change for his port anyway, so we will draw another culture with a fresh, sterile needle this morning.  We will have to treat him with IV antibiotics for 48 hours starting this morning until we are sure his line is clear.  If it happens to be a true line infection, we will be doing a full 7-10 day course of antibiotics.  More reasons to pray it's not one.

I'm sure I don't have to say it again, but this port is Keegan's lifeline through which he receives sustaining IV nutrition 5 days per week and two drug infusions of anakinra per day.  I know I end every darn post with this, but we would greatly appreciate your prayers for his safety and health, as well as clarity and guidance for his medical team.  Thank you so much.  We will update as we know more.

Saturday, April 28, 2012

Slowing it down

We did it! The heart transplant and rheumatology teams reacted quickly to this flare, and we slowed it down dramatically. Keegan and Gray spent all morning in the Legacy ER. We redrew labs and blood cultures. Every level we would expect to change in response to a flare did, just not severely so. Yesterday's grew back another possible contaminate, so hopefully this one will be ok. They gave him one round of IV antibiotics while in the ER to be safe. No fever since last night, and besides being ornery & tired, Keegan is really handling it really well. Thank you, thank you for all the prayers. We will head back to the ER tomorrow morning for one more set of labs to be sure, but we are so grateful for quick action by the medical team & loads of prayers that helped Keegan weather this latest storm at home.

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Friday, April 27, 2012

Fever, fever go away

Well, let's see.  The last flare started April 13, so Keegan had a break of just 2 weeks this time.  Seems he went from a flare every two months, to a one month break, to a two-week break.  Moral of the story?  This disease process is getting ahead of us...fast.  

He has been "simmering" all day between normal and 101.  The team agreed to draw labs outpatient and start another 5-day burst of oral steroids at home.  We will take him in to the ER tomorrow morning for another round of labs to see how this is progressing.  If his pattern of the last year holds, tonight is going to be the hardest.  We are armed with zofran and IV tylenol if needed.  The plan is to ride this one out at home as long as his labs or clinical symptoms don't take a turn for the worse.  

Obviously, this speeds up our timeframe for increasing Keegan's drug regimen.  We were hoping to have a team meeting with his doctors this week to go over everything.  (Our transplant coordinator has been working hard on this meeting, but it is pretty difficult to coordinate some of the doctors' schedules.)  We will likely not be able to wait until the remaining genetics come back to make this decision as we would have liked.  Hopefully, we will know more on Monday. 

For now, we once again humbly ask for prayers for our Bug and for our family.  Our hopes continue to be dashed with each escalation of this disease.  Whatever it is.  We know the coming decisions are big and risky, and we are just tired.  Tired of never having an easy option and never having a break to enjoy a little normalcy.  At the risk of sounding like a whiny child (Lord knows I don't need a third one around here), it's not fair.  We lived through this all last year, watching it get worse with each passing week.  Even though we have more information now and an inkling of what's going on, it's still happening all over again.  And we're tired of it.  Exhausted, actually.  I can only imagine what Keegan feels.  So, we would greatly appreciate your prayers for all of us, and we will update again soon with more information as we know it.  Thank you so much.

Sunday, April 22, 2012

M-I-C-K-E-Y

Keegan and Audrey may not have been able to meet Mickey while at Disney World.

No matter.  Mickey came to them!  In three different, really sweet ways.  

On Friday, the Mouse himself showed up to visit Keegan and Audrey both!



(SHHH! Mickey is actually my cousin Ben!  Being the awesome uncle he is, Ben bought this costume for his niece, McKenna's birthday party.  When he heard that we had to come home from Keegan's Wish trip, he drove up to surprise both kids with a visit.  Such a treat!  Thanks, Ben!)

Keegan was apprehensive most of the time, but overall, he did GREAT!
A hug for Mickey!

Mission accomplished!

 "Mickey" visited Audrey at Mamie and BD's house, too.
And she was in HEAVEN!!
Mickey, it's really you!!

Our little dictator told Mickey to "sit!" and climbed right into his lap.
I don't think Mickey at WDW would have done that for her!


Thank you so much, Ben!!
You made two little kids SUPER happy, 
and we are beyond thankful.

Friday also brought a big surprise in the mail for the kids.  Gray's cousin, Wendy, had some contacts at Disneyland in California.  When she told them about the trip that wasn't, they arranged for a very, very BIG package to arrive for the kids.  Dumbo, Bambi, one of the characters from the movie Treasure Buddies, and a TON of movies, including some of the classic episodes that Keegan adores.  BIG thank you to Wendy and Chris and Karyn of Disney!!  You rock!


Now, THAT is a dog!

The last surprise came today from my sweet friend, Jenni.  She wanted to come decorate Keegan's room in the hospital with Mickey stuff, but we were lucky enough to duck out of the hospital too quickly to do that.  So she came to visit today and brought both kids some fun Mickey and Minnie items.  Audrey will come home tomorrow, and I can't WAIT to let her open her gift.  She is going to LOVE it!
Hi-fives for the coolest Mickey balloon I've ever seen.


Keegan and one of his biggest fans, Jenni.
We love you, friend! Prayers and hugs coming your way, as always.

*Quick update about the kids: Audrey's rash has dried out, so she is not contagious anymore.  She comes home tomorrow!! Yeah!!  I haven't seen her in a week.  So difficult.  Keegan slept a little more last night, despite having several bad diapers.  He wasn't as distended tonight, so we are hopeful for more improvement.  TPN will start five days per week tomorrow.  We're praying that will help the situation also.  Thank you as always for all your prayers!  Each was deeply felt.

Saturday, April 21, 2012

Shut-eye

I have a fun post for tomorrow.  Some really special people have done some really special things for Keegan and Audrey due to the untimely end of our Make-A-Wish trip.  More on that tomorrow.

For tonight, could you join us in a few prayers for Keegan's tummy?  He has been really, really struggling since the last flare.  All day long, but most disturbingly, all night long.  None of us has slept more than a three hour stretch since.  We will be increasing his TPN to 5 nights per week because of all of this.  We really, really need to find a way to help him be comfortable enough to sleep overnight.  It's miserable for him, Gray, and me.

The good thing is that Audrey is still with my parents and has been able to sleep fine.  My mom brought her back to the pediatrician on Thursday as the rash continued to spread.  Our doctor said she actually had a very "impressive" and classic case of hand, foot, and mouth virus afterall.  Being that she is contagious until the rash has crusted over, she probably won't be home until Monday.  Thank God for the invention of FaceTime!

Thank you for lifting up my sweet Bug in prayer one more time.  More tomorrow!

Wednesday, April 18, 2012

World's Quickest Trip to Florida

We sure didn't know how quickly this trip would end when we started out.  On Thursday, we were all excited to start our adventure...most of us were, at least.  Keegan has difficulty understanding what is happening right now sometimes, so he really struggles to understand big changes and breaks in his routine.  Even if parts of it are enticing, like talk of Mickey Mouse and all his favorite characters.  Unfortunately when the rest of the family is excited about it (like mom, who hadn't been to Disney since age 5, or BD, who is like a 5 year old most of the time, or Audrey, who rarely went 10 minutes without pointing to Minnie on her dress), it is hard to keep Keegan from getting overstimulated and melting down.  Despite all of that, the kids did very well on the plane and through most of the afternoon.  

Waiting for the plane

The Make-A-Wish banner the flight attendants hung for Keegan

The extremely sweet pilots offered Keegan the chance to sit in the cockpit.
He wasn't quite ready for that, but Daddy thought it was cool.

Welcome to Orlando, Keegan!

We stayed at the Give Kids the World Village.


GKTW is kind of like a resort for families of kids who have been granted a wish trip to Orlando from any wish-granting organization.  It's quite amazing, almost like a huge Ronald McDonald House.  Each family has one side of a little duplex to stay in.  There is a cafeteria, a pizza parlor, and an ice cream shoppe.  A million ways to entertain the kids too - a carousel, pond to race remote control boats or feed the ducks, an arcade, a movie theater, a really cool pool, and activities every night for the kids.  It also has an amazing accessible playground that was unfortunately being renovated.  



These trains run around the facility in the evening to help you get to everything.

Speaking of everything you have to get to, each night has a different theme with activities for the whole family.  We arrived on Thursday, and every Thursday night is Winter Wonderland night.  Santa comes to GKTW every week all year!  There is a little Christmas parade, and each kid gets a toy.  The kids didn't make it to Santa because the line was so long, but they didn't seem to mind.  

Audrey and Pops.
She confiscated the Mickey Mouse doll that was meant for Keegan immediately!

Keegan was a little overwhelmed by the craziness.
Looking at this picture, maybe we should have known he was about to crash.

Keegan and Mamie watching the Christmas parade.

Oma and Audrey enjoying Winter Wonderland.

While I was at orientation getting our park passes, the rest of the family sampled some of the ice cream parlor's offerings.  Keegan actually ate some, too!  The ice cream parlor is literally open from 7:45am-9pm, so you can indeed have ice cream for breakfast, lunch, or any time.

As you now know, Keegan was admitted to the ER just a few hours after the above photo was taken.  That left the grandparents and Aunt Alex to entertain Audrey and pack up all our stuff on Friday.  There is so much to do on site that Audrey had a blast, despite never making it to the Magic Kingdom.

The awesome trainscape

Whack-a-mole at the arcade

Some...ahem, thrilling...rides

Pretending to be train conductor

Swimming with BD

Breaking out her dance moves after a good swim

Friday night was the Pirates and Princesses party by the pool.  You may not be able to tell from her face, but I'm told Audrey was ALL about the princesses.  Evidently every time another girl wanted to come through the princess line, she would step away and then run back for another chance to sit with them!  


Every child who visits GKTW gets a special star from the Star Fairy who finds a perfect place on the ceiling of the Castle of Miracles for it.  Then they are given a "passport" to bring back another time that helps the staff find the child's star.  At check-out, the staff let Gray fill out Keegan's star.  Hopefully when we are able to return, we will find that star for Keegan to finish his Wish upon!



**In case you were wondering, Keegan was discharged and is hanging in there at home.  Audrey, on the other hand, developed a fever on Monday.  My parents took her to the doctor, who diagnosed her with herpangina, a virus that causes throat ulcers.  By this evening, she had been free of fever for 24 hours, but she has a rash that has spread from her feet up to her legs and now some on her arms.  It's probably just the virus, but we will take her back in tomorrow to be sure.  We will likely have to wait to bring her home until the rash clears up.  I guess it was a good thing we came home from Orlando when we did, or Audrey would have been the one sick at the Happiest Place on Earth.  Unfortunately, we didn't know Audrey had contracted this virus when we allowed her to come visit Keegan on Sunday in the hospital.  We would greatly appreciate your prayers for both the kiddos - that Audrey knows her parents love and miss her and wish they could be with her when she's sick and for Keegan's safety.  

Sunday, April 15, 2012

Better day & more details

Today was by far a better day for all of us.  We each had a chance to sleep and catch our breath.  Keegan had a slow start to the day, feeling crummy and ornery, but by the early evening, he perked up.  He even walked down to the trains with Audrey and all the grandparents.  His labs have started to trend in the right direction, and we will probably go home tomorrow.  Before I talk about that, I guess I need to update a bit about how all this went down.

We arrived in Orlando around 3pm for Keegan's Make-A-Wish trip to Disney.  After getting the car and bags and all, we got to the Give Kids the World Village where we were to stay around 5:30pm.  Then the whirlwind of checking in, getting the lay of the land, unpacking, giving meds, etc, started.  We were told to grab dinner quickly because Thursday nights are "Winter Wonderland" and to not miss a meeting with Santa (more details on that in another post).  In the middle of that, I had to attend an orientation meeting for parents to get all our park passes and details of the trip.  We finally got the kids to bed and made a plan of action for the trip with our family by 11pm.  Pulled meds and prepared for the next day, then headed to bed around midnight.

Keegan was sleeping in one room with Alex, and Audrey was in a crib in a room with me and Gray.  I hear Keegan start moaning and crying around 12:30pm.  At first, he didn't feel that hot, but I realized he had the chills when I laid down next to him.  I tried to convince myself not to get up and dig out a thermometer, but after 15 more minutes, I could feel him starting to sweat.  Temp was 101.7.  Woke up Gray, sent him to Walmart for tylenol.  By the time he got back (maybe 20 minutes), Keegan's temp was to 103.6.  Called the transplant team, hoping we could wait until morning before bringing him in.  Nope, they said find the local children's hospital and take him right now.  Alex stayed with Audrey, and less than 12 hours after we landed in Orlando, we were checking in at the ER at Arnold Palmer Children's Hospital.

A little Curious George always helps ER trips be more manageable. 

Both the team here in Dallas and the doctors in Orlando acted quickly.  A preliminary set of labs indicated Keegan was surely having another MAS flare, so we started a steroid pulse immediately.  Line cultures were drawn to be sure, and we just tried to manage his fever in the ER.  We tossed around some ideas about what to do, but ultimately, we knew the safest thing to do was to bring him home.  He wouldn't feel better enough in time to use our park passes, and we didn't need to take a spot at Give Kids the World from another family.  Additionally, APCH does not have a transplant center or a rheumatologist on staff, so his treatment would be the doctors implementing whatever our team at home said to do anyway.  By 10am, they were working on insurance approval for the transport home.

Loading into the ambulance to leave APCH for the airport.

About 30 minutes before the flight team showed up at 11:30pm, one of the line cultures grew back positive.  We started antibiotics even though we were all fairly confident it was a contaminate.  Keegan seemed to relax when the transport team arrived.  It was two nurses he knows well - one of them, Jayme, was even there the day he was born and took him from Plano Presby to Children's.  I'm sure the IV benadryl we gave before leaving didn't hurt either!  The flight went smoothly overall.  We stopped in Jackson, Mississippi briefly to refuel and landed in Dallas sometime around 4am.  Keegan slept almost all the way, and never required any interventions while in the air.  He seemed happy to be on "number 8" with his friends, and I know I was happy to see some familiar faces as well.


Medical flight #3 for Buggy

Home sweet home


As I said, things were starting to look better today.  We're doing a 5-day pulse this time.  They redrew a line culture yesterday, and it hasn't grown anything.  We will finish the run of antibiotics tomorrow.  If things stay stable, we will go home tomorrow afternoon.  It seems pretty well decided what the next drug choice will be.  Nothing we do from here on out will be easy or risk-free.  We're talking heavy hitters now.  Before we do that though, we are going to have another team meeting with his main rheumatologist (not one of her attendings) and immunologist present.  Both women are extremely smart and are really working hard to figure Keegan out.  They originally wanted to wait on changing his treatment plan until we had the last blood work finished, but obviously, we won't have that luxury.  These labs are looking for an inflammatory pathway where Keegan's normal immune system breaks down and for a battery of other genetic immunodeficiencies that hold some promise for an answer.  However, if any of them are there, it will put Keegan back on the bone marrow transplant track.

A visit from Audrey, BD, and Mickey Mouse never hurts.

I am still downloading and editing the few pictures we have from the trip.  Because we didn't use our park passes, Give Kids the World said we could definitely come back.  Make-A-Wish has already said they are ready to work with us again as soon as Keegan is ready.  If there is a silver lining in all this, it is that Keegan has absolutely no idea what he just missed.  He can only comprehend what is going on right now and about 10 minutes into the future (hence Gray's famous phrase most often said to the grandparents, "don't promise or mention anything to him that you can't produce right now!").  Luckily, that means that unlike other kids his age who may have been looking forward to this trip for months, he is blissfully unaware.  Audrey still mentions Minnie and "the castle" now and then, but she seems happy enough about it.  The Give Kids the World Village is like a little theme park in and of itself, so the family had no problem whatsoever keeping her entertained Friday while we waited at the hospital with Keegan for transport.

I know I say it alot, but thank you so much for your prayers and support.  We are beyond disappointed and frustrated.  Such an enormous hit to our strength and hope for better times for our Bug.  I pray that it makes our return trip that much sweeter though.

Saturday, April 14, 2012

Back to CMC

The flight team came to get Keegan and me at about 11:30pm. The flight went fine, and we arrived back to Children's in Dallas around 4:00am. Keegan is doing ok; fever seems to have broken. Labs look worse this morning, but it's not as bad as it could be. I will update with more details later today. I haven't slept since we woke at 6am Thursday to leave, so I need to shut my eyes while Keegan does.

Gray, Audrey, & the rest of the family arrive home around 2pm. We cannot fully express our gratitude for every prayer for our safe return. Thank you, y'all. More later.


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Friday, April 13, 2012

Maybe next time

I guess Keegan's body wasn't quite ready for Disney World. He spiked a high fever last night, so here we sit at Arnold Palmer Children's Hospital instead of making memories at the Magic Kingdom. Still in the same clothes we arrived in.  Another flare. This hospital does not have transplant or rheumatology to care properly for Keegan during another flare. It sounds like the transport team from Children's Dallas will be able to come get him by tomorrow, pending insurance approval. Plans are still very much in the air. We will update more as we know it. Please pray for a quick transfer home where he needs to be. Thank you so much.

Monday, April 9, 2012

Wishes do come true!

I told you it was going to be a big, BIG week for our Bug...

Take a look!


Keegan's wish (well, as best as we could guess his wish would be,
since he couldn't communicate it to us) has been granted through 
the North Texas chapter of the Make-A-Wish Foundation.

What does it say, Keeg?

Audrey knows!  "Minnie!"


That's right!  This week,

KEEGAN'S GOING TO WALT DISNEY WORLD!!


Audrey's in!  So is Mamie, BD, Aunt Alex, Pops, and Oma!

I can hardly believe this is happening, and I will probably be in denial until midnight before we leave at the end of the week.  We had a marathon day of appointments with Keegan's medical team today.  Everyone agrees that (1) Keegan really needs this trip, and (2) we don't want to rock the boat before we leave.  Big decisions are coming in regards to Keegan's treatment plan, but they can wait for Mickey.  Hey, who can't wait for Mickey?!  So, our prayer is that Keegan stays the course, stays well throughout the trip, and has the absolute time of his LIFE this week!  Won't you please join us in that prayer?

And it's all due to Keegan's super-special Wish Granters,
Ms. Kristen and Ms. Kelly.
We are so blessed that our dear friends worked so hard
to make this dream come true for Keegan.
Thank you doesn't begin to describe it!

NEXT POST FROM THE
MAGIC KINGDOM!!