Saturday, February 27, 2010

Labs & iPhones

We had a pretty good week here in the Harrison household, even if the weather was a bit depressing.  But the sun is shining today!!  I don't so much mind the winter weather.  I just prefer Mother Nature pick one season and stick with it.  This back and forth between cold and dreary to sunny and springy is maddening!

Anyway, Keegan is doing pretty well.  Besides therapy, he had labs and his monthly breathing treatment of an inhaled antibiotic this week.  The antibiotic is to prevent a very specific type of pneumonia that only affects immunosuppressed people and is very, very dangerous.  A lot of kids/adults that have had transplants or chemo take an oral drug to prevent it, but Keegan is unfortunately allergic to that drug.  He really doesn't mind the treatments because he gets to watch a DVD in an isolation booth (Nemo can usually cure all ills), but he has been a bit more reluctant lately because Mama can't go in with him again until after his sister is born.  Again, usually a movie can make anything better, but he still fights the nurse pretty good during the treatment.  As for labs, he had to have two sets drawn (Wednesday and Friday) to recheck his numbers.  Everything looked fairly good for Keegan though, and we even avoided any med changes this time around.

On a different note, I must confess that I'm now a happy iPhone user.  I didn't quite see the appeal the first month or so I had it, but now, I'm definitely a convert.  Keegan sure likes it too.  He's become quite obsessed with "Peekaboo Barn", a game I downloaded on my phone for him.  It's quite simple; you touch the barn and different animals appear with the name of the animal shown and pronounced.  He would play it for hours if I (or the battery) let him.  That being said, if you call or text me with no response, it could be due to this...


My favorite app so far is "iMissal", mainly because of it's daily scripture verse feature.  Today's verse was Philippians 2:5 - "Your attitude should be the same as that of Christ Jesus."  Wow, talk about a wake up call!  So, I went back to read the rest of the second chapter of Philippians.  I'm pretty sure that I don't need to comment on this.  I can definitely see in my daily life how I fail miserably to humble myself and my attitude as Christ.  Perhaps in just reading this, you will too.  I can't always change my circumstances in life or the things that happen to me or my family, but I can (and I will) change my attitude towards them and others every day.

If there is any encouragement in Christ, any solace in love, any participation in the Spirit, any compassion and mercy, complete my joy by being of the same mind, with the same love, united in heart, thinking one thing.  Don nothing out of selfishness or out of vain glory; rather, humbly regard others as more important than yourselves, each looking out not for his own interests, but everyone for those of others.

Your attitude should be the same as that of Christ Jesus,
Who, though he was in teh form of God, did not regard equality with God something to be grasped.
Rather, he emptied himself, taking the form of a slave, coming in human likeness; and found human in appearance, he humbled himself, becoming obedient to death, even death on a cross.
Because of this, God greatly exalted him and bestowed on him the name that is above every name, that at the name of Jesus, every knee should bend, of those in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.
Philippians 2:1-11

Sunday, February 21, 2010

GI Update REVISED & Baby Walker, too

Ok, so as is usual with us and Keegan's GI issues, the plan to stop Keegan's tube feeds during the day this coming Monday and Tuesday has now been abandoned.  Grand ideas, not so grand execution.  Like I said when the idea was first brought up, I thought it was a bit premature, and the more Gray and I thought about it, the more we realized it was way too ambitious for this point in time.  We consulted with his dietician, and she agreed.  SO, a NEW plan was hatched, andddd...........

Notice anything missing from this picture of Keegan's room during his nap this afternoon? (and no, it's not Keegan, he's in the crib...)
NO IV POLE!!!

So the new plan was to start trying to increase the hourly rate Keegan receives his tube feeds again in an effort to reduce his overall time on the feeds during the day and to eventually switch him to "bolus" feeds, or several shorter feeds during the day.  Currently, he is continuously fed specialty formula through the tube from about 7:30am to about 3pm at a rate of about 2 ounces per hour.  You may remember that this has been attempted multiple times in the past to no avail, BUT he's doing well now and has been on a medication to help with the motility problems for over 6 months.  We've already increased his hourly rate by 5 milliliters an hour with no problems and shifted some of his daily volume to the nighttime feeds.  Combine that with a late nap today, and for the first time since October 2008, Keegan went to sleep with NO TUBES OR IVs running!!  Pretty AWESOME, don't ya think!!  We sure do!  I have to say, it felt so strange, but SO good to lay him down in that crib without worrying about a pump, tube, line, or pole. 

And since we're updating today, we are so excited to share some pics of Walker (Lainey's new little brother) that we snapped last night when we visited.  He's adorable!  Congratulations again, Ben & Abby!

Sleeping so peacefully

The tiniest, most precious feet

Miss Lainey showing us how she says "hi" to Walker

Gray & Walker

Keegan was more interested in stealing Walker's bouncer....oh boy, this is gonna get interesting! ;)

Friday, February 19, 2010

Congenital Heart Disease...Behind the Scar

At the end of the last post, I commented about Olympic gold-medalist Shaun White, who is a CHD (congenital heart disease) survivor.  I realized that I never posted last week during national Congenital Heart Disease Awareness week.  My friend Andrea (mom to Summer, lymphoma survivor and bone marrow transplant recipient) reminded me yesterday that before it happens to your family, so many of us go about life completely oblivious to the struggles of children with birth defects and chronic illness.  I have to agree.  I am an extremely different person now than I was two and a half years ago.  Heart disease colors every aspect of my life, even a "normal" pregnancy.  Our family is not alone.

Did you know that congenital (or "at birth") heart defects are the most common type of birth defect worldwide

Did you know that 1 in 100 babies born in the United States (about 40,000 babies each year) have a congenital heart defect and that the majority of those are undiagnosed during pregnancy and even throughout childhood?  A late-term sonogram saved Keegan's life.  A short, non-invasive, no-risk procedure that could save thousands, and yet is not yet routine in prenatal care in America.

Did you know that for 1 out of every 10 babies born with heart defects, it is fatal?  That means roughly 4,000 children in America will not live to see their first birthdays because of a congenital heart defect.  Many more will have just a few short years more to impact our lives.

Did you know that the leading cause of infant death in the United States is heart disease?

Did you know that the leading cause of sudden death during childhood is undiagnosed heart disease?  A simple, noninvasive, non-painful monitor called a pulse oximeter used on all babies at birth might help reduce that number greatly.  Most heart defects result in poor oxygenation of the blood.  Monitoring oxygenation levels on all babies for even a short period of time after birth could reveal undiagnosed heart problems and save many children.  Still, it is not yet mandatory in the United States.

Did you know that there are over 40 known types of heart defects and endless combinations of those defects?

Did you know that Children's Medical Center Dallas performs over 500 cardiac surgical procedures a year and over 300 open-heart surgeries per year?

Did you know that Children's has been performing cardiac transplants since 1988 and has since performed well over 120?  (Keegan was the 99th!)

Keegan is a CHD SURVIVOR.


And he's not alone.  We have met so many amazing CHD kids - Tucker, Karis, Hannah, Andrew, Natalie, Shelby...the list goes on and on.  You may not see it this way, but I think God has blessed each one of these incredible children with a gift.  An ability to inspire others, a strength beyond words, a light to shine in the darkest corners.  Each day while we mourn the loss of those who are no longer with us, we continue to be grateful for the days we have our survivor.  He has taught us so much more than we could ever have imagined.  As the days pass and scars fade, we remember this is the life of so many, and we promise to continue the fight as long as we are able.


Behind Your Scar...


Sometimes I have those "moments",
When I think...life's just not fair,
Then I think of all you've been through,
And I see the scar you bear.
A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?
And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.
What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)
People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)
Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.
If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.
It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?
You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.
No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.
You've taught us to love one another,
(Helping each other to cope)
You've taught us compassion for others,
You've taught us to never lose hope.
You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

~Stephanie Husted, heart mom to Braeden (Hypoplastic Left Heart Syndrome)

Thursday, February 18, 2010

GI Update

So much for the new blog helping me update more!  We've had a super busy week with therapy, appointments, and meetings.  It also doesn't help that I officially cannot get on the computer when Keegan's awake anymore.  By the time naptime or bedtime has come around, it's hard to squeeze all those "I'll wait till he's asleep" things in!  I'm sure every mom out there knows that! 

Keegan's had a pretty good week at therapy.  He is consistently making his vowel sounds and quite a few consonant sounds at speech.  He is particularly having trouble with the letter "p", but his therapist said that's a pretty hard one.  No new words to speak of, but he's trying very hard these days.  In occupational therapy, he's finally getting strong enough to finish an activity on his stomach (i.e. shoulder/neck strength stuff) and getting more comfortable on the mobility swing, which helps his spatial orientation.  Both things that lugging a feeding pump around on your back can interfere with sometimes.  And in feeding therapy, he continues to do well with his puree/baby cereal mix at a pretty thick consistency.  He seems to really get a kick out of doing it himself now, although he, of course, has to throw a bit of drama in at the beginning before he digs in!  (And you think I need a baby girl's drama on top of that?  Boy howdy!)  He also made a big step forward this morning by finally crunching through a very thick animal cracker.  May sound simple to you, but for Keegan...trust me, it was big!

He had his GI check-up this morning.  His weight is stable, and the doctor was very pleased with that after we cut a few ounces of the Elecare formula out a few weeks ago.  His liver and spleen feel good.  Sooooo, we've decided to trial run Keegan next Monday and Tuesday without his daytime tube feeds!!  Personally, I think this is a little premature.  While some hunger might increase the volume of the foods he's already eating, there's not necessarily reason to believe it will increase the progression of his oral skills.  BUT there's still no real harm in trying it, just to see.  He will be supported through it with a little bump in his nighttime feeds.  He drinks enough water to keep him hydrated in addition to that.  The worst thing that will happen is he'll lose some weight from a combo of not enough volume and dumping the extra food because his intestines can't handle it.  But he has a bit of a cushion in his weight now, so a little weight loss can quickly be overcome by going back up on his feeds.  Of course, if it doesn't seem to be going well, we can always stop the trial run.  He has labs and a breathing treatment next Wednesday in the Center for Cancer and Blood Disorders, so we'll check in with GI while we're there to see how it went.  Prayers would be GREATLY appreciated though!

Also, just a brief update that Keegan's kidneys appear stable, and the atrophied kidney even measured a bit larger this time.  It was minor though, so very possible it was error.  Still no news is good news!  He had some particulate in his bladder that was a little red flag, but his urinalysis didn't show any problems.  The best news is that this good report allows us to reduce his kidney monitoring to every six months unless his labs start to get worse!  Yeah for good reports!

Other than that, we've just been playing and enjoying nicer weather.  The baby seems to be doing well.  She's definitely a fiesty one!  She kicks ALL day long.  Keegan wasn't a kicker; he was a pusher.  He'd push a hand or foot out and just leave it there.  I'd have to push back on him to get him to move.  Not this gal!  She is a mover and shaker.  I can already tell she's going to shake this family up!  Keegan's perspective changes daily - for every "uh huh" to "are you going to be a big brother?", we get a counter "nuh uh".  Guess he'll either be elated or highly disappointed in June! ;)  Speaking of which, we want to send a big congrats to our friends Ben and Abby (Lainey's parents)!!  Baby boy Walker was born yesterday, and all are well.  Lainey evidently was not too enthralled with her baby brother, even though she seemed to be pretty ready, putting her baby dolls "night night" in Walker's crib and all!  Walker and his mom will come home tomorrow, so we'll be sure to update with pictures this weekend when Keegan gets to meet him. 

Thank you as always for prayers for our Bug and all his little friends.  Better sign off now to watch Shaun White get his gold medal.  Did you know the Flying Tomato is a CHD (congenital heart defect) survivor?!  A Tet actually (he had Tetralogy of Fallot; the defect Keegan and his friend Tucker had).  Amazing!  Go Shaun!!  Go USA!!

Friday, February 12, 2010

A foot of SNOW!!

Yup, final tally was over a foot of snow in Dallas, Texas!!  I've seen more than that when we lived in Nashville, but this is a first for Texas!  Keegan seems to be feeling much better today, so we took him out to play this morning.  Unfortunately, one of the first things he did was fall face first into the snow.  He wasn't too into it after that!  Although this morning when we opened the front door to let him have a first glimpse, he said "whoa!" (His new word - very Joey Lawrence, I know! Ha!  We now have "Mama", "Daddy", "hi", "bye", "whoa/wow", and "yeah".  Most everything is "deedee" or "ama/ahme", and sometimes "ain-ee" for Lainey!)  I hope he remembers a little of this snow because this is probably the last time he'll see snow like this in Texas in his lifetime.

Can you believe this is Texas?





So over it by this pic!

Wow, Mama needs makeup and more coffee...

Eating his soy yogurt with a spoon all by himself (and yes, he's in the living room...we had to use a little reinforcement from Disney to get him to eat today.  Thank you, Bolt!)

Thursday, February 11, 2010

A Good Snowy Day

Well, it was a record-breaker of a day.  At last check we, here in good ol' Dallas, Texas, have had over 8 inches of snow today alone...and it's still coming down!  Rusty was unfortunately the only family member to get to play in the snow.  We just didn't think it was a good idea since Keegan's still battling this cold/virus/allergies/crud.  We were so lucky to have Daddy take a snow day this afternoon and spend lots of time playing with us inside where it was warm and dry!  I failed to get any good daytime pictures - surely tomorrow will be more dramatic, as it's supposed to freeze tonight.



The only reason we ventured out this afternoon (ok, besides to make a Dunkin coffee run) was to check in with Keegan's hematologist for a scheduled visit.  We were nervous at the start of the meeting because Keegan's temperature was 99.9 degrees (his baseline normal is actually around 97.4), but he was acting just fine.  We were encouraged that his weight was stable, since he hasn't eaten much in the last several days due to his cough.  His labs looked really good!  They may be a bit misleading because he had a shot last night in addition to fighting a cold. Still, we have decided to cut one of his shots a week out and see what his labs are doing in two weeks!  Keegan's doctor thinks that he may not need as much support now that his nutrition is improving from better absorption of his formula.  Yippee!!  Keegan surely will be happy with Mama giving him one less shot a week!  If he continues to do well, we will try to wean him off the shots in the next three to six months.  Wouldn't that be amazing?!

And the last record-breaking news of the day?  Keegan fed himself almost an entire jar of puree tonight with a spoon!!  It was quite a messy and long process, as little actually made it from the spoon to his mouth at a time, but he really had fun!  SO wish I had gotten video or a pic of it.  We'll try again tomorrow and see what we get.  Gray and I sure loved ending the day on a good note and a surge of pride in our little guy!  Growing up before our eyes!

Stay safe and warm out there y'all! 

Wednesday, February 10, 2010

Crazy Day

Wow, what a busy day!  We started off the day bright and early at Children's Legacy for Keegan's renal (kidney) ultrasound.  He did very well during the scan.  At least it didn't take very long!  Cardiology snuck me a copy of the report this afternoon, and it looks like there were no discernable changes in the size of the right kidney since October.  That was what we wanted to hear.  We're hoping to be able to go to ultrasounds every 6 months now.  We want Keegan's right kidney (the only properly functioning one) to grow with him, so these tests will help us make sure that it doesn't start to get smaller or stop growing.  There were two comments on the report that the cardiologist said were odd and might need follow-up, but I'm hoping to hear from the nephrologist in the next few days to go over those.

I dropped Keegan off at home with my mom, and Gray and I headed to Children's downtown for the baby's echocardiogram.  Her heart looks absolutely perfect right now!  Praise God!  The doctors didn't even think we need to do any more fetal echos, just at least one more sonogram, before she's born.  We'll follow up after she's born, but for now, she looks great!  I have to say that it was so nice to get good news for once and especially to get that news from a team of people you know and who care dearly for your family.  We are certainly relieved, but it still is a whole different set of fears than with Keegan.  I'm not sure I was even that scared that there would be something wrong with her heart - that's actually something I know how to handle!  On the other hand, I have NO idea how to care for a normal baby!  I brought home a one-month old on a strict schedule (albeit with two moving boxes full of meds, pumps, and monitors...but still!).  It may sound silly to you, but trust me, it's very real to me.  I have seen God's faithfulness in Keegan's life, and I just struggle to remember that He is faithful to us all...sometimes we just have to choose to see it.

Then, there was the unexpected doctor's visit of the day.  While discussing Keegan's current runny nose and cough, the transplant team requested we have Keegan seen by his pediatrician to ensure we weren't missing anything.  As you all know, there's some rampant nasty colds, viruses, and RSV going around.  I was trying to be the composed heart mom and NOT freak out about this little illness.  Oh well.  Of course, our pediatrician wanted to see him right then, so I rushed home to get him up from his nap to head to Baylor Frisco to see her.  He checked out just fine; it's either allergies or a cold or a virus.  Who knows but not much we can do about it.  I feel as if he would have crashed by now had it been more serious, and he had a scheduled shot for his white blood cell count tonight, which will hopefully give his little body a bit more "fight".  I've been battling the allergies/drainage for over two weeks now.  It just seems like a losing battle lately!  I know A LOT of you are suffering from the same thing, and my prayers are with you!!  We're ready to have our old Keegan, and not this couch potato, back and running like a wild man.


Thank you so much for your prayers, encouragement, and well wishes for our family today.  We definitely felt them.  It is so easy to fall into the trap of doubt and fear, and the support of our family and friends renews our strength daily.  We also can't tell you how much we appreciate you keeping our friends lifted up in prayer also.  I know they cherish it as much as we do.

"Your words have supported those who've stumbled; you have strengthened faltering knees." Job 4:4

Tuesday, February 9, 2010

Allergies

We think it's just allergies, but Keegan's feeling pretty cruddy.  It started with a runny nose, and it's gone down into his chest a bit.  So far (knocking on wood), no fever yet!  We added a few other medications to try to help his symptoms.  Allergy/cold medications can be tricky for anyone with heart conditions, but hopefully, we have the right concoction.  We'll see how tomorrow goes.  Praying for a smoother night tonight.

Speaking of tomorrow, Keegan and I both have ultrasounds scheduled.  Keegan for his kidneys and mine of the baby's heart (an echo really but close enough).  We would greatly appreciate prayers for both.  We'll post again tomorrow with updates.  Now it's time for some sleep for all of us...I hope.  Thanks again for all your support and prayers.

Friday, February 5, 2010

Prayer Request

Our childhood friend, Delaney, had her twin girls on Wednesday about 10 weeks early.  She had been inpatient on bedrest for the last nine weeks, enduring many, many hardships.  Little Jillian is fighting hard in the NICU right now, but unfortunately, her sister, Allison, passed away yesterday in her parents' arms.  Allison joins her older sister, Abigail, in heaven.  We are completely heartbroken for Delaney and Kevin.  They have endured so much already, and this is just too much to imagine.  Please, please keep them in your prayers.  For Jillian's strength and healing, for Allison's journey, and especially for comfort, strength, and hope for Delaney, Kevin, and their families.  I just can't say any more than that.  I'm sorry.  We appreciate every prayer.  Thank you.

"I lift up my eyes to the hills -
       where does my help come from?
My help comes from the Lord,
      the maker of Heaven and Earth."
Psalm 121: 1-2

Thursday, February 4, 2010

Nephrology Clinic

First of all, thank you so much for your encouragement for the new site!  We are so happy y'all are enjoying it as much as we are.  I did want to clarify one thing, however.  COTA told us this week that they cannot link to this blog from his DonorPage, and the old "cotaforkeeganh" domain will not direct people to the DonorPage either.  Bummer.  However, the button at the top right of the page will, and we can always be found through the "find a family" option at http://www.cota.org/.  Not a big deal, just wanted to update about that because it was not how I understood it from them the first time.

On to other news, Keegan had a nephrology (kidney) appointment today.  I don't have a lot of information to share because we won't have the ultrasound of his kidneys until next week.  Keegan has one functioning kidney, as the other one atrophied after he went into acute renal failure as an infant.  We check in with his nephrologist to ensure that his remaining kidney continues to grow proportionately with him from now on.  His kidney labs, blood pressure, and red blood cell counts have stayed within normal ranges for Keegan.  The doctor was also glad to hear that Keegan's beginning to mount a slightly better response to the shots he receives for his white blood cell count.  Until Keegan's potty-trained (whew, don't even get me thinking about potty training a boy with constant g-tube feeds and diarrhea!), the only non-invasive test we can run is a renal ultrasound.  If this one shows no change from 3 months ago, we can stretch out the next one to six months, etc.  The biggest concern for Keegan is to avoid kidney toxicity from his medications, so every good report is encouraging!  We'll update again after the ultrasound next week.

I had my 20-week appointment yesterday, and everything seems to be going well.  We didn't do the standard ultrasound this time since we're doing so many other checks between the high-risk OB and fetal echos.  Our first echocardiogram for the baby will be next Wednesday, and we'll be sure to update about the results.  Thank you so much for prayers for our little girl.  We are hopeful and trying to trust in His plan, but it sure can be nervewrecking!  I've been drowning in allergies with no voice at all for the last week.  So not fun, but I'm doing ok other than that.  Just trying to have as much fun with this little guy one-on-one while I can!  Especially since he started saying "mama" for the first time this week!  I've been waiting almost 2 1/2 years to hear it, and I have to say, it's absolutely the best thing ever!

Rolling around in the crawl tunnel

The ONE picture I got of him looking at the camera with his eyes open...sheesh

Pondering the great questions in life

Please continue to keep our friends in your prayers if you don't mind.  Avery is home from the hospital but still battling fevers and coughing from her fight with RSV.  We pray that she will stay home and continue to improve daily.  Carter unfortunately is still inpatient.  His parents are trying so hard to find the right course of treatment for his issues, and we pray for guidance for them and all the doctors involved to make the best choice possible for Carter and his family.  Lastly, Keegan's "girlfriend" Lainey caught a nasty case of bronchiolitis.  She's on the mend, and we pray she's 100% soon!  Thanks so much!