Monday, October 31, 2011

Happy Halloween

In preparation for Halloween, we hit up the pumpkin patch at Storybook Ranch last week.


Back in the saddle again


Audrey's first pony ride

Hay maze


Audrey and Ms. Kelley, Gage and Ainsley's mom.  
Audrey became very good friends with Kelley and Abby while we were gone.  I love that!

Bounce house fun

 This ladybug L-O-V-E-S bounce houses! 

 For Halloween, Keegan was a heart surgeon (Dr. G, specifically), and Audrey was a pig.  Their costumes were a tad thrown together, since I didn't have much time to prepare.

Dr. Harrison with his nurse.
He has Harvard Medical School scrubs, Gray's hospital badge, and a real surgical cap to boot!
My costume was the best ever - scrub pants & a tshirt!  Sweet.

So Gray was the farmer to Audrey's pig.  
This is the only picture with her hood on.  Despised it.  Sigh.

Aunt Alex joined the fun.


Abby hosted the pre-trick-or-treating neighborhood party this year.  I started it last year to bring the kids together for good fun and food.  I think it will become a tradition to hand it off to a different person each year.  It has definitely outgrown our little house.  Thanks for hosting, Abby!  It was GREAT!

Oh, the bounce house!

Being a surgeon for Halloween conveniently camouflages your need to wear a mask.

Alex was a "flamingo dancer"...get it? Flamenco/flamingo!  Clever sister, that one.

Audrey with her princess mentors - Lainey (as a character from Barbie Princess Charm School and Ainsley as Snow White).

Goofball.

The ghost cake and the cute mummy pretzels Alex made.

BD and Audrey

Trick or treat!
Keegan and Daddy, Ainsley, Gage, and Landry

Dani, Lauren, Paulina, Ava, Keegan, Dylan, and Gage
Keeg only lasted a few houses, and he really didn't understand what was going on, despite the many repeated views of "Mickey's Halloween Treat".  We were just happy to have him home and participating a little bit!

And a little piggy ready for bath taking off with her farmer's hat! 

We hope everyone had a good, safe, and fun Halloween!  Keegan is doing ok.  We are going forward with his steroid wean starting tomorrow on a weekly basis, so this is where things could get dicey.  It will take almost 4 months to safely get him off the steroids.  So frustrating because we are beyond ready to say good-bye to them.  I want to see my precious boy's face again...as well as a sunnier disposition.  I do promise to get a better medical post up soon.  Thank you for your prayers over the weekend for Keegan. He isn't necessarily doing better, but he is not any worse.  Hopefully the changes we have seen are steroid-related.  Big transplant appointment tomorrow.  Fingers crossed for a good report!

Thursday, October 27, 2011

Nervous

Going to bed nervous tonight...not because of the Rangers.  Honestly, I could care less right about that now.

I'm nervous because Keegan had a rather questionable day.  His tummy was not very happy today.  Not bad per se, not even as bad as what used to be his "normal".  Just not what we have been used to the last three weeks.  He has been begging and begging for water every waking moment.  In the past, this has been a bad sign for his kidneys, but so far, he is still urinating ok.  Had a few bouts of gagging and choking throughout the day at mealtimes.  Again, not terribly unusual but more than the norm.  The really freaky part was when he started shivering and shaking for a good 30 minutes at dinner.  I've never seen him shiver...ever.  Not even when he's been playing outside in brisk weather or fresh out of the pool.

But his temperature is normal.  His heart rate blood pressure were the same as always.  His attitude was about the same.  So, Keegan's asleep for now and hopefully just had a slightly off day.  I may not sleep so well.  Praying my nerves end up being a waste of energy.  Would you join me?  Thanks.

Monday, October 24, 2011

Wrapping up Boston

It's hard to believe that it's been almost three weeks since Keegan was discharged from Children's Hospital Boston.  I realize that I never wrapped up our pictures and final tidbits from discharge day and our final appointment day.  Here's a little love for our home away from Dallas.

Keegan's window on the cardiac floor is the second from the top on the far right.

Waiting to leave on discharge day
He was SO not happy when he realized we were actually leaving the hospital.

I think Ashleigh was quite possibly Keegan's favorite nurse.  
She was there for us on some really rough nights...and days too!

Shanda and Ricky got to say good-bye.
We missed quite a few other friends, especially Liz who also rode out some scary times with us.
You learn alot about each other when you're taking hour long turns holding pressure on a gushing wound, ya know.

The cardiac ICU.  A wonderful group of people beyond those doors.
So glad we were just across the hall when we needed them.

Kinda funny that the cardiac floors at CHB and CMCD are both on the 8th floor.
Keegan loved his room.  More than I think he has been previously attached to any other hospital room in the past, although he does get very comfortable...too comfortable.
The amazing staff on the floor held his room while he was in the ICU so he wouldn't have to adjust when he came back.
On the last day of appointments outpatient before we flew home, he was getting tired late morning and asked "number 8? Room please?"  When we got to the floor to say our goodbyes and wrap up some paperwork needed for travel, we had to keep him from running back into his old room, which was of course being occupied by another kiddo by that time!

In the cab leaving the hospital on discharge day.  
"No leave hospital, Mama!"  Keegan could not understand why we were so happy to be going!

Our awesome cardiologist, Dr. Blume.
She loves Keegan so much.  Leaving her and the simply amazing transplant team at CHB was absolutely the hardest part of coming home.  
Wish we had a picture with the whole team! 

The ones that finally put Keegan's puzzle together!
Dr. Henderson and Dr. Sundel, the rheumatology team (and Dr. Kim too!).
Words fail me when I try to explain how blessed we were to have them on our side, along with the hematology team.  How do you thank someone for saving your child's life?
And Dr. Sundel also has the rare honor of getting Keegan to eat a lollipop for the first time.
Took him a month, but I think he had two at that last appointment!

Keegan's favorite activity in the hospital - throwing coins in the waterless "pond" in the lobby.

Daddy and Keegan in front of the Bippity Ball Machine in the lobby, another favorite.
As loud as that thing is, there is something about the cadence of those balls bouncing, whoosing, and pinging that is reassuring and calming, even on the worst days.

Mama and Keegan

After lunch in the garden 


Thank you to each and every CHB doctor, nurse, and staff member that cared for Keegan.
The words are wholly inadequate to describe how desperately grateful we are for your compassion, expertise, and dedication.  We are forever indebted...yet again.


Thursday, October 20, 2011

Aaaaand, we're back

Online, that is.

After a very long week without internet access (my WORD, are we not overly dependent on technology these days?), we are finally back online.  Come to find out, thanks to our trusty DVR, that our internet has actually been out since about 2 weeks after we left for Boston.  I'm SO not paying for that month, thank-you-very-much.

I still have a lot of photos to organize and post and am slightly overwhelmed by the amount of "updating" is necessary for this little blog.  I am still unpacking/organizing/cleaning, not to mention trying to locate/wash/iron fall clothes and shoes.  If you know me at all, any one of the above three problems, not to mention the combo of them, is enough to give me an anxiety attack.

Some highlights from the last week:

  • Watching my kids "remember" each other again.
  • Sitting down to eat dinner together as a family.  For the first time...EVER.
  • Mexican food and margaritas.  (Yes, it tops my list. Yumm.)
  • Deaccessing Keegan's port on Saturday to let him swim for the first time this year last weekend.
  • Picking Audrey up from school for the first time.  She has a fascination with the play vacuum cleaner.  Definitely my child.
  • Coming home Monday afternoon from going to pick up 2 boxes (yes, big brown boxes) full of Keegan's medications to find Audrey walking, just like she had been doing it forever.  Tuesday, her teachers said she was walking on uneven surfaces on the playground.  By yesterday (Wednesday), she was standing up on her own unassisted from sitting in the middle of the room, without pulling up on anything.  Today, she was almost running.  The girl is a perfectionist, I suppose.  Waiting until she had it all down to take off on her own.  Hmmm...wonder where she gets that?
  • Going to sleep at night knowing that Keegan is not connected to any tubes or wires!!!  His last feed ends before Gray and I go to sleep.  So very, very wonderful.
  • Attending a very productive, reassuring team meeting with all of Keegan's specialists on Tuesday. It feels very good to know that we have an umbrella for the next storm.  We may not know how sturdy or reliable our "umbrella" is yet, but we are not stepping out without some sort of plan.  That, in and of itself, is very reassuring.  He is now actively followed by 8 specialists, plus his pediatrician and therapists.
  • Relatively stable labs for Keegan.  His numbers are definitely taking longer than expected to normalize.  Either that or they are not going to really normalize as we continue to wean steroids.  That remains to be seen.  I will certainly do a better update on his medical status soon.  I think one of the transplant cardiologists said it best last week...Keegan still has enough steroids on board (which is a LOT) to keep him doing really well, considering what he just went through.  We're on the "high" side of the wave essentially. As we continue to wean the steroids, we are unsure how he will do.  Still, we are going to ride this wave and enjoy it as long as we possibly can!
Pictures and more regular updates to follow soon!  Thank you again for your prayers! 

Sunday, October 16, 2011

Be right back!

Pardon the interruption: your regularly (or not so regularly) scheduled blog posts have been interrupted by a lack of internet access in the Harrison household. Please talk amongst yourselves while we work diligently (and Verizon, evidently, does not) to remedy the situation. Keegan is stable & happy. Audrey too! We will resume updates as soon as we possibly can. Thank you for your patience!


- Posted using BlogPress from my iPhone

Wednesday, October 12, 2011

Home again

...home again, jiggety jig!

We made it! All together under one roof tonight. Thank you, Lord, for your many blessings!

More to come!


- Posted using BlogPress from my iPhone

Going home!

We are on the plane & ready to go HOME! More details to follow soon. Thank you to every doctor, nurse, & staff member at Children's Hospital Boston who helped make this day possible. We wish we could take you all with us! Thank you to everyone who has prayed for us on this journey. We could not have made it here without you.

Audrey, here we come!! We love you!!


- Posted using BlogPress from my iPhone

Monday, October 10, 2011

Fun in Boston

This afternoon, we headed to a place that absolutely makes me, the germaphobic mother of an immunosuppressed child, shake with fear...Boston Children's Museum.  In the end, I hope that our reliance on masks, hand sanitizer, and fervent prayers for Keegan's safety were sufficient to protect him because oh boy, did he have fun!  Thanks to Keegan's medication schedule and Gray's attempt to work from the hotel room, we were able to capitalize on the half-price-admission-after-4pm deal and limit Keegan's exposure to one hour.  But trust me, it was an action-packed hour!

Bubbles!

KID POWER!

Shooting hoops with Daddy

Water table.  His shoes were SOAKED!

Arthur's kitchen

Workin' the Bobcat in the construction zone

Cars and trucks

Master architect

Peas in a pod

The fun food stand outside the museum.  Hood is a dairy, much like Borden or Schepp's back home.

After the museum, we stopped by a playground near the hospital.  This playground is where Keegan suffered his first skinned forehead back in 2009.





We ended the evening with dinner at Matt Murphy's Pub.  A lovely neighborhood pub where Gray happened to sneak in one night the first week we were in Boston looking for a football game.  He didn't find one, but he did find some awesome, caring people in the owner and bartender (leave it to Gray, right?  Never found a stranger!).  They listened to Keegan's story and were genuinely caring and supportive.  When we returned with Keegan in tow tonight, they treated us like family.  A big thanks to Siobhan and Doug!

Tomorrow will be whirlwind of labs and appointments.  Praying Keegan gets the all clear to return home...especially since we just bought airline tickets.  There are still a lot of "game-changer" labs pending, but at this point, it's time to go home while we wait on those pieces of information to fall into place.  Thank you for your support through all of this.  We've really enjoyed the last 5 days outpatient in Boston.  Thank God for Audrey and family...Boston would be near impossible to leave without them!