Thursday, September 30, 2010

Biopsy results

We received Keegan's heart biopsy results today - NO REJECTION!!  Thank you, Lord!

That's about where the good news ended today.  Keegan woke up very, very swollen this morning, and it was obvious that his one good kidney was not taking to the morphine and anesthesia very well.  He had no wet diapers until this afternoon after a bit more medication to help him out a bit.  By this evening a lot of the edema was gone.  Because this has happened the last two times he had morphine, we're assuming he has an allergy to it, and that was added to his chart today.  This evening, he is still struggling with that, some itching, and some antibiotic diarrhea.  We're praying that he can get some sleep tonight and feel more like himself tomorrow.

I forgot to mention yesterday about one of the best parts of our day.  You might remember that Keegan was the 99th heart transplant performed at CMC.  Andrew, the 100th transplant, was 13 years old when he received his heart a few weeks after Keegan.  Andrew was a huge Red Sox fan, and he and Dr. G traveled to Boston to celebrate when he got his miracle.  Andrew has always been super sweet to Keegan, but we hadn't seen him since May 2008.  I looked up yesterday morning in the surgical waiting room and thought I caught a glimpse of his mom.  Sure enough, they had just flown in from west Texas for his annual.  When Andrew's cath was over, he was right next to Keegan in the recovery area.  It was wonderful to catch up with him and his mom.  Andrew has grown over a foot since his transplant and is back playing baseball again.  Even though he was super groggy, Andrew took the time to sit up, give Keegan a high-five, and talk to him.  It was a really great moment and almost, kinda, made the day worthwhile!  ;)  What a wonderful transplant "family" we have!


We are so grateful to be home and with such a wonderful report for our Bug.  Thank you so much for your prayers for his health and safety.  We are more than blessed.

Wednesday, September 29, 2010

Heart Cath

Keegan had his annual transplant work-up today.  He had a heart catheterization, angiogram, & biopsy, in addition to his usual echo, xray, labs, and EKG.  Needless to say, it was a long day, but everything looked good enough for Keegan to come home this afternoon.  We won't get his biopsy results tomorrow, but everything except a few lab numbers was good today.  We will update again tomorrow with biopsy results.  Thank you so much for your prayers today.  We certainly felt them.  Please continue to pray for Bug - this evening he developed a slight fever and what appears to be a case of mild hives or something.  He is asleep now but obviously uncomfortable.  We are praying that it resolves overnight and that Keegan is able to get some rest and feel better tomorrow!



Our big boy at the beginning of a very long day...

Just for reference, here is Keegan at the beginning of his annual one year ago.  He's come such a long way!


Entertaining himself with the ultimate toddler toy, Mama's phone, before his surgery.

A little morphine bolus makes for a sleepy boy.

Now that's a sedated echo!


Before we left this afternoon, we stopped by the cardiac floor where we found this lovely new piece of artwork!  What a cute little model!  ;)  There are four new framed photos on the floor, including this one of Keegan and one of sweet Hannah.  I guess both of them lived there long enough to make the wall of fame.




Sunday, September 26, 2010

Curious George!

Aunt Alex gave Keegan one of the best birthday gifts he could have asked for - tickets to see Curious George live on stage!  As you know, Keegan is George's biggsest fan!  He calls him "GooGoos" (don't know why).  Keegan wakes up every morning and asks for "toon...GooGoos!"  Yesterday morning though, he woke up and said "MONKEY!"  All day Friday we had talked about how he was going to get to meet George & give him a hug, so I guess he woke up ready to go!  He had such a great time.  Thanks for making it happen, Aunt Alex!


Keegan had "Monkey Seats", which meant he got to sit in the first row and meet George before the show!  There were only about 6 other kids who got to do this that morning.

 He could hardly contain his excitement heading down to meet George.

As excited as he had been, he was super quiet when George came in the little room.  He let every other kid go first and just watched in awe.

Giving George a hug!  Best moment ever for this little boy, by far!

 I think we need a poster of this in his room!


The other best part for Keegan?  The gimmicky souvenirs we had to buy!  This thing lights up and spins; he had to have a tshirt and a balloon at intermission.

Look, it's George! 
Alex got the perfect seat for him.  We were far to the side of the stage in the front row without a single soul around.  Better than a box seat for sure.  All the characters would wave right at him when the stepped to the side.  Perfect!

There was a cast member that rode on stage at the beginning on a bike, and he was waving at Keegan and Alex from the wings while we waited for the show to start.

Pure happiness

The $5 balloon...yes, seriously, $5.  Let's just hope it lasts a long, long time!

Completely GooGoos-ed out! 

p.s.  Keegan is scheduled to be admitted for his annual transplant work-up this Wednesday.  We had rescheduled it from the beginning of the month because of a respiratory illness he had.  In true form, his nose started running this morning.  We'd really appreciate your prayers for Keegan's nose to clear up and for a good report for his heart this week.  Thanks so much, and we'll keep you updated. 

Tuesday, September 21, 2010

Party Time!

Keegan's birthday party was this past Sunday on his transplant anniversary.  It was a perfect day, even if it was pretty hot.  Keegan loves farms, barns, and all type of barnyard animals.  We were blessed to find Storybook Ranch in McKinney, which is run by River Ranch Educational Charities for kids with special or medical needs and the underprivileged.  Miss Denise & Miss Vanessa helped make Keegan's birthday extra special and one we will always remember.  They had a bounce house for the kids, a petting zoo, and two ponies to ride.  Keegan was so excited that for weeks when you asked if he was going to ride horses or ponies at his birthday party, he'd yell "PO-KNEES!!"  But I think the bounce house was the hit for everyone in attendance...even some of the adults!

Keegan was so excited to be joined by all of our family and his friends Brady, Lainey, Gage, Ainsley, Kaden, Carter, cousin Alex, and cousin McKenna.  Thank you to Kelley, Abby, & Mark for sharing their pictures with us.  Thank you so much to everyone who came and celebrated this wonderful day with us.  We simply cannot say thank you enough to everyone, especially our "wranglers", at Storybook Ranch.  This truly was a fairytale opportunity for our miracle.  We can't wait to return to the ranch for the pumpkin patch!  Happy 3rd Birthday, big Bug!

*Please note that if you usually read the blog from email, you will need to go to the actual website (http://keeganh.blogspot.com/) to see & hear the slideshow of Keegan's birthday party memories!  Thank you!

Sunday, September 19, 2010

Happy Third Heart Transplantaversary!

Three years.  Three years since the day that Keegan was given new life.  It seems like just yesterday and yet an eternity at the same time.  This day is so etched in my memory that when I went to sign a form with today’s date, I wrote 2007, instead of 2010.  It just occurred to me recently how much life was squeezed into those first seven days.  We’ve always known the insane roller coaster that took place during that first week, but to think that amazing journey from birth to transplant all happened in just one week  It can make three years stretch on forever. 

Today also marks a new milestone.  As of this afternoon, Keegan has officially been outpatient for an entire year.  There were times he toed the line, but he made it.  The scales are tipped in his favor now, as he has now spent more of his three years outpatient than inpatient. 

And think of how much has changed in just one year.  At this time last year, Keegan was still on 20 hours of tube feeds a day.  His entire oral diet consisted of some goldfish crackers, yogurt melts, and water.  His entire vocabulary consisted of “mama”, “daddy”, “hi”, and “bye”.  His fine motor skills were so delayed that he could not stack more than three blocks, string beads, or match the pieces of a basic puzzle.  His immune system was so destroyed that he was getting shots of a booster every single day and more at times.  From September to May, he could not venture out of the house except to go to the hospital, therapy, and grandparents’ houses, and it seemed he practically lived in a mask to try to protect him.  And, oh yeah, that little thing about becoming a big brother. 

At his birthday party today, Keegan looked every bit of a happy three-year old boy.  If you really paid attention, you could notice the speech delays or feeding difficulties or growth problems.  But if you didn’t, all you could see was a little boy having the best time he could possibly have playing with his friends, petting goats and pigs, riding ponies, and running as fast as his little legs could take him.  He didn’t cry when it was time for cupcakes, and he blew out (kinda) his candle.  He even picked up a fork and ate a few bites for the first time ever.  It was all so very, very normal.

Having Audrey join our family has taught us that this very kind of normalcy is something we cannot deny Keegan.  For three years, we’ve longed for him to just be normal, to be ordinary, to be healthy.  Unfortunately, we’ve had to isolate him and shield him from the everyday to get to the goal of being healthy.  By putting him in school, we’ve slowly started to break down the walls we’ve built for him.  So he can grow and flourish and just simply live.  It’s nice to walk into school or the grocery or a restaurant and realize that you’re the only one that knows the battles Keegan has fought.  I’ve come to treasure the opportunities that allow him to feel just like everyone else. 

But at the same time, I want to stand up and yell as loud as humanly possible, “You don’t understand.  This child is a miracle!  Don’t you see how special he is?! Do you have any idea what this child has been through?!”  More importantly, I want to scream to everyone who will listen to treasure every second they get to spend with him because we don’t know how long it might be.  I want to do everything for him; I want to keep him isolated in hopes that I’ll get to keep him longer.  But at the same time, I don’t want to look back one day and say “I wish he could have.”  I want everyone on this earth to know how lucky we are to have such a blessing like Keegan.  We thank God every night that we are able to pray with Keegan before bed – “thank you for keeping me safe and healthy and home today, Lord”…and we hope for the strength to even thank Him for the days that we aren’t able to say those words.

Because three years ago, he was given a second chance when another family chose to give him life from their unimaginable loss.  A second chance to squeeze every possible minute of life out of what he was given, no matter how much it ends up being.  Not many of us get to say that.  I don’t know how many years I will get to celebrate this miracle with him.  But until that day comes around, I will try to make things as normal and extraordinary at the same time as I possibly can.  Keegan deserves no less than that.

Give thanks to the Lord, call on His name, make known among the nations what He has done.
Sing to Him, sing praise to Him; tell of all His wonderful acts.
Glory in His holy name; let the HEARTS of those who seek the Lord rejoice.
Look to the Lord and His strength; seek His face always.
Remember the wonders He has done, His MIRACLES, and the judgments He has pronounced.
Psalm 105:1-5

Thursday, September 16, 2010

Pictures & a Prayer

We had some fun in our Baylor gear before the Bears went 2-0 last weekend against Buffalo!  I wish I could hold out similar hope for this weekend, but we're playing TCU at TCU...yeah, not so much.  It was good while it lasted!  Love Audrey's bow?  Visit my friend Stephanie's store at http://www.patiecakes.com/ or http://www.etsy.com/shop/patiecakes.  She makes the cutest stuff and almost all of A's bows.  The sports bows are great, and she does them for college & pro too!  And Keegan's shirt is actually Gray's from when he was a boy at Baylor camp in the summer.  The back says "Gray 2002"...I think it's actually an old Baylor Line jersey from the 80s. 





Just in case you thought they always love each other!  ;)

I hate to end this post on a downer of a note, but it's something I need to get off my chest.  And frankly, when the day comes, I hope Keegan can read this and understand how I've always felt.  Two things happened in the last few days.  First, Carter's family (multivisceral transplant) unfortunately had to attend a funeral today for a lovely young lady and friend who was a short gut survivor and suffered severe complications after finally receiving an intestinal transplant.  Reading her family's online journal was heartwrenching, as they witnessed their beautiful daughter slowly lose her twenty year battle both physically and mentally.  Second, I was talking to an administrator at Keegan's school this morning about another child who had some medical issues.  I mentioned how comforting it can be to realize that children like Keegan who have life-altering illnesses in childhood will never grieve the loss of what they "used to have", as opposed to adults or teenagers who have previously lived healthy lives.  To our children, this is the life they will have always known. 

That is comforting and yet heart-breaking at the same time.  These two occurences highlight the blessings and curses of having children with special or medical needs.  It's often said in the world of solid-organ transplant (i.e. heart, intestines, liver, etc, rather than bone marrow) that the transplant is not a cure but rather substituting one disease for another.  We are told time and time again to emphasize the quality of life that our children have been given, not the quantity - because no one can tell us how long that will be.  The only thing we can be certain of is that it won't be nearly as long as we want it to be, whether it's two or ten or twenty. 

I've said it before but my greatest fear is not the day I have to say good-bye.  That is unfortunately something that I have time to come to grips with...although I know it won't make it any easier.  My fear is the possibility that he will quit fighting.  The day he might say enough is enough; I don't want to do this anymore.  There will come a day when he realizes that he's not the same as his friends.  There will come a day when someone teases him for the scars that riddle his body rather than see the courage and miracles that they represent.  There will come a day when he doesn't get excited pulling into the hospital parking lot or being loaded into an ambulance.  And there will come a day when he looks up at me from a procedure or surgery or inpatient stay and say, "I'm scared."  I just pray that he won't say that he's done.

And I won't blame him for feeling that way.  I won't blame him for not wanting to keep up the battle.  I won't blame him because he has fought since the very second he came into this world.  And it's hard.  It's so very, very hard.  And it's not fair...at all.  So, I pray every single night for his strength and courage.  I pray every single night that he doesn't get tired.  I pray that I am always able to reassure him of the love that God has for him, that saved him, that gave him life.  And I pray that Gray and I have the strength to keep fighting when he can't. 

I take great comfort and joy in the fact that anyone who didn't know Keegan's story could look at him today and not know that anything is wrong.  I pray for many, many years of that.  I know many will read this and think why we would be so negative.  But this is just our reality.  It's what we live with day in and day out.  It doesn't make us pessimisstic or depressed but rather more and more grateful for what we do have.  We have two beautiful children who are so much more of a blessing than we deserve.  This is their life...and I pray for it to be that way for a long, long time.

Tuesday, September 14, 2010

Surprise!

Thank you to Mamie & BD for the idea and footwork for Keegan's big 3rd birthday surprise!  Thank you to every single one of our family that chipped in to make it happen!  We're looking forward to many years of fun in Keegan's fort!  It's AWESOME!  Keegan, Gage, Ainsley, & Lainey tested out the fort when they got home from school today, and it was a hit already.

Look at me!

Lainey was the first to conquer the rock wall on her own!

Gage was the first one down the slide.

Ainsley taking a spin on the slide.

Oops!

Sunday, September 12, 2010

Happy 3rd Birthday, Bug!

Our dear Buggy,
You're 3 amazing years old!!
Our lives were brightened when you entered this world three years ago with so much life and vigor.  You taught us so many things.

That life is so much more than the sum of our days...

How to find pure joy in the simplest of things...

To look at the world through rose-colored glasses...

To treasure each moment that God has given us with each other...

That even when things seem the most trying and complicated,

He can gently push us to see the guiding hand He has placed in our lives...

You have shown us what family truly means....

And not to fear the times when it seems you have to forge out on your own...

You are truly unique and such a blessing to so many, big Bug!

Don't ever change because we love you just the way you are!

And at the end of every single day, we will thank God for the blessing of YOU!


 


HAPPY 3rd BIRTHDAY, KEEGAN!!  WE LOVE YOU (and Johnston, too - the angel who gave you life)!!

On the night you were born,
The moon smiled with such wonder,
That the stars peeked in to see you, and
The night wind whispered, "Life will never be the same!"
Because there had never been anyone like you ever in the world!
-"On the Night You Were Born" by Nancy Tillman

Tuesday, September 7, 2010

Audrey, You're 3 months old!

Umm, wow!  Where has the time gone?  Audrey turned three months old yesterday!  She'll be a teenager before we know it!

At three months old, our little ladybug has turned a corner.  She is truly a happy baby.  There was a time I was afraid I wouldn't be able to say that!  Once she adapted to a good routine and started getting better sleep, she really started to shine.  She loves loves loves to "talk", and she has a smile as big as her little face.  Now you can pretty much bet that if she's fussing, it's time for a nap.  Unlike her brother, Audrey cannot nap anytime, anywhere.  She would like to be in her room, swaddled, with the lights out and white noise on, thank you very much.  That's a bit of a problem, considering how on-the-go we are with Keegan's appointments, but we're making it work.  The Lord knew I needed to learn to be a bit more flexible.  Guess He just thought I needed to learn it the hard way! 

For a few weeks, it seemed Audrey was on a hunger strike.  She would down 4 ounces overnight, but during the day, it was sometimes all we could do to get her to take an ounce or two.  Then a growth spurt hit, and look out!  The girl went from nothing to 5 ounces at a time overnight.  One morning she even took 6, but that turned out to be a little ambitious.  I measured her to be a little over 22 inches and close to 11.5 pounds.  Keegan was 23.5in and only 11lbs 7oz at his four month appointment!  She is growing like a little flower (who wants to compare their daughter to a weed?).  Ha!  During that growth spurt, she was only sleeping in two to three hour stretches, but things are starting to get better now.  Gray and I learned to swaddle from the cardiovascular ICU experts, but Miss A can break out of our best swaddles.  But she can't sleep well without one, which makes me dread having to break her of them.  We'll take what we can get for now.

Keegan had his first full day (9am to 2pm) of school today.  For Audrey, this means a day of one-on-one time with Mama.  I'm so glad for that opportunity.  Until now, I wasn't sure I would ever get to giver her the type of individual attention that Keegan had from us as a baby.  Today, we took the time to sing a few songs, read a book, and do a few "airplane" rides on Mama's legs.  It was a nice break from laundry, dishes, and phone calls to the hospital.  This is such a precious time in her life, and I'd hate to miss a second of it.

Happy 1/4 of a birthday, Miss A!  We love you so much, little ladybug.  You make us so happy, and we can't imagine our life without you anymore!

And now, a video of our little talkative girl to put a smile on your face!
video

Monday, September 6, 2010

Nevermind

Well, we tried.  We spoke with the transplant team this afternoon, and after consulting with anesthesia, Keegan's cath will be postponed for at least two weeks.  He is feeling much better today though.  He only coughed about 10 times today, but when he does, it doesn't sound good.  His nose is considerably clearer, and he has more energy and appetite today.  The problem is that intubating him could drive any congestion and/or bacteria into his lungs, making it harder to extebate him and increasing his risk for pneumonia.  We certainly don't want either of those things, but it is still rather disappointing. 

Now we just have to pray that he clears up completely and stays well for the next two weeks.  We don't have a date yet, but we should be able to reschedule for the week of the 20th sometime.  The good news is that the team said that although he isn't well enough for the cath, he can go to school if we think he has the energy to go.  He certainly does, so the bright side of the coin is that he will get to be there for his first full day of school - lunch and nap and everything.  Yikes!  I don't mind him not napping, but I'm truly afraid to hear that he hasn't had anything but water all day when I pick him up at 2pm!

Thank you again not only for the prayers and support but for the ability and opportunity to ask for them.  There are so many things I wish and hope that I could give to Keegan.  Material and physical things, of course.  I wish I had all the money in the world to provide for every need and want.  More importantly, I hope that I am able to give to him the humility to ask for help, the wisdom to know when to do so, the friends and family that will rise to the occasion, and a faith that is confident and strong, knowing that God the Father will provide for him what we can't.  Thank you for being that for him and for us.  We are more grateful than we can say.

"So I say to you: ask and it will be given to you; seek and ye shall find, knock and the door will be opened to you.  For everyone who asks, receives; he who seeks finds; and to him who knocks, the door will be opened...If you then know how to give good gifts to your children, how much more will your Father in Heaven give the Holy Spirit to those who ask him!"  Luke 11:9-10, 13

Sunday, September 5, 2010

A Favor

We have a very big favor to ask of all of Keegan's friends and family.  Could you pray for him?  And if it's not too much to ask, a few of his friends too.

Keegan has been battling a runny nose that we thought was allergies for a week now.  We've been keeping him cooped up inside on these beautiful fall-teasers of days to try to get him well.  The runny nose, however, has turned into congestion in his sinuses and throat that has now started to move into his chest.  Upon consulting with the transplant team this afternoon, we were informed that there is a little something going around causing this type of congestion in much of the transplant population, that is not necessarily allergy related.  That seems pretty probable considering that Audrey, who is theoretically too young to have allergies, has also been a bit goopy lately.

None of this would be a big deal except that Keegan is scheduled to be admitted for his annual cardiac transplant work-up on Tuesday, which includes a heart catheterization, angiogram, and biopsy.  If he is too congested, anesthesiology won't put him under for the heart cath.  We really want to get his annual out of the way this week.  IF (and I hope that is a big "if") Keegan were to need to be treated for rejection or anything else, there is still a possibility that he would be home for his birthday and party, which is actually scheduled for his transplant anniversary.  The longer we wait to do this the more likely (by Murphy's law) it is that something would crop up and ruin these big days for him. 

So, I'm humbly (or maybe not so humbly...gee, really into the parentheses today!) asking for prayers for our little Bug:
(1) that his nose/sinuses/congestion would clear up to get a green light for anesthesia,
(2) that his biopsy,cath, and labs are picture perfect, and
(3) that he is home to celebrate his two big days in style!

And because they need it more than we do, could you please find the time to lift up two of our friends in prayer?  Little Jameson has had his bone marrow transplant and is suffering big time with the after-effects of chemo and transplant.  Also, little Miss Avery's mama, Angie, was recently admitted to the hospital for asceptic meningitis.  She has been in an immense amount of pain, in addition to the pain of being separated from sweet Avery during this ordeal.  We pray for healing, comfort, peace, and strength for both these special people and their families.

Thank you so much for allowing me to come to you, our friends and family, at this time.  We know the amazing power of prayer and that we can always count on you to help lift us and others up.  Thanks again.  We'll update soon....hopefully from Children's on Tuesday!

Saturday, September 4, 2010

Karis & Kyra

Keegan's "birthday twin", Karis, was in town this week for her annual cardiology visit.  Keegan and Karis were born the same day and were in the CICU at Children's together.  Karis's repair was done with her own tissue, and she has done fantastically since then.  She got such a great report this time that she doesn't have to come back for another check for three years!  Isn't that wonderful?

Can you believe these two are almost 3 years old?!

I could not for the life of me get the two of them to look at me at the same time!

Last fall when we announced that Audrey was due the end of June, Ashley (Karis's mom) announced just a few weeks later that she was also due with their second child on July 4.  We joked throughout our pregnancies that if she were early and I was late, we could have birthday twins again!  Well, that didn't happen.  Audrey was early, and little Kyra was a few days late.  BUT get this...Audrey was 6/6/10 at 1:38am, and Kyra was 7/7 at 1:34pm!!  Craziness, I tell ya!  Both girls are doing well and healthy, and even though our firstborns' broken hearts brought our families together, we couldn't be more thankful for healthy little girls. 
Kyra & Audrey had these matching outfits, so we couldn't resist a picture.

Happy girls!

We are so glad we were able to spend time with you, Chuck, Ashley, Karis, & little Kyra!  We're very grateful for Karis's good report and hope that the next time we get together is JUST for fun!

Friday, September 3, 2010

Check it Out!

Keegan's first day of school was featured on the Children's Medical Center blog, "From the Red Balloon."

Click HERE to read it!