Monday, January 31, 2011

Update

Just wanted to post a quick update that Keegan is doing well today.  His energy is good; no fever or pain.  We're a bit confused because he never really did develop classic flu symptoms.  His GI issues took a hit, but that's to be expected.  I am so glad that it didn't become as serious as it could have been because I am still fighting this darn thing.  My headache and cough just will not quit.  I honestly can't remember the last time I felt this bad.  Audrey still has a little bit of a runny/stuffy nose, but otherwise, she's doing ok too.  Such a relief.  Luckily, I think the rest of the family got on Tamiflu quickly enough to keep from getting sick.  We'll just have to keep our fingers crossed.

That's about all I can muster right now.  I just wanted to say one more time how much we appreciate your prayers, love, and support for Keegan.  I am hardpressed to put into words how terrified I was that this flu would be too much for him.  Once again, he has shown us what a fighter he is and how powerful prayer can be.  Thank you is simply not enough.

I will leave you with this cutie patootie though....

We had some family photos taken back in November, right before Keegan went into renal failure.  It had been a nice warm week, but by Saturday, it was freezing.  Audrey was NOT happy to be out in the cold, and we could not get a smile out of her to save our lives.  SO, Erica May took a few more of just our little Ladybug, so we wouldn't miss capturing this precious time with her.  I can't wait to see the rest of them!  Thanks, Erica!

Saturday, January 29, 2011

Home

We were able to bring Keegan home tonight!  Thank you so much for your prayers.  We are 100% confident that it was the support, love, and prayers and of course, the mercy and grace of our Lord that we were able to do so.

Keegan hasn't had a fever today, and the mysterious pain he was in seems to have gone as well.  We still have no idea what that was, but we are assuming it was another one of his intussusceptions.  He is on Tamiflu, but so far, he has not shown any of the classic signs of having the flu.  The hospital is at full capacity with the flu and a rampant stomach bug.  We agreed that it was not safe to be there if he could be supported at home.  Considering he and I most likely have the same strain of the flu, there is no additional harm in him being here.

My fever broke overnight, so assuming the rest of my symptoms start to go away, I should be ok by tomorrow afternoon.  I spent all day thoroughly disinfecting the house before Keegan was discharged this evening.  Audrey will stay with my parents until we are sure it is clear here.  She has been rather fussy today and might be a little congested, but considering she's in the throws of teething, it's hard to tell what's going on with her.  So far, she does not have a fever, and we're hoping for her to stay that way.  We are watching Keegan even more closely than we have in the past.  We know the signs that mean it's time to bring him back to the hospital, and luckily, the Legacy ER is literally right across the street.

I'm not sure it's possible to thank everyone enough for your support, friendship, and prayers.  I know how hard it is to ride this rollercoaster from where we're sitting, and I'm sure it must be maddening to watch it too.  And a rollercoaster is exactly how it feels most of the time - some pretty awesome ups, terrifying plunges into the lows, and never really seeming to stop long enough to catch your breath.  We are just so blessed and grateful to know we are not alone on the ride.  Even if you're a spectator to it, we can hear and feel your support from the sidelines, and it certainly helps make it more bearable.  I wish I could say this ride will get easier as we go along, but I'm not so sure that's going to happen.  But we'll just have to take each turn as it comes, knowing that the Lord built this darn rollercoaster, and He isn't surprised by any of the loops or drops - not one little bit.  So, once again, thank you from the very bottom of our hearts.  We will be sure to keep you updated on Keegan's progress, so thanks in advance for continuing to check on him and keep him in your prayers.

Friday, January 28, 2011

Update

Keegan does have the flu.  He is being transported by ambulance to the main campus of Children's downtown, but he will have to wait in the ER until a bed is available.  He is in an immense amount of pain though that does not seem like it would be flu related.  They are having trouble getting a scan of his abdomen or anything else because he is locked in a little ball or fighting.  The doctors were still concerned about the bruise where the catheter for his port is tunnelled into his chest.  All of these things can be better handled downtown, including if he starts to become more symptomatic from the actual flu.  His labs came back showing his kidney function is creeping back the wrong direction since Monday, and his white blood cell count (infection fighters) has not risen to what you would expect to see in someone fighting the flu.  This isn't wholly surprising with Keegan, but it is still concerning.  His bone marrow has a tendency to tank when he has an infection, rather than mount a response.

Gray, my parents, and hopefully my in-laws too, have started taking Tamiflu as a precaution.  Audrey woke up a bit fussy from her afternoon nap, but my mom said she seems fine now.  She happens to be pushing her first two teeth out right now, but we are not out of the woods with her yet being exposed to this.  Obviously this is a strain that was not in the flu vaccine because all four of us received our shots, even Audrey.  She can't have the antiviral Tamiflu until age 1, so if she gets it, it could also be very bad. 

I thought my temperature hadn't gone up since 3pm, but of course, it's starting to creep back up.  If it breaks by tonight and stays gone, I might be able to go back to the hospital by Sunday.  I don't think I can even put into words how much it hurts not to be able to be there for him.  To know that I put him in such danger and pain.  We try so hard to protect him and keep him safe, and I have let him down. 

Please, please keep praying for him.  I hope that we have caught it early enough to keep it from becoming too bad.  He is in the best possible place right now.  I just wish I could be there with him and Gray right now.  Thank you so much for your prayers and support.  We will update as we know more.

Please...

Pray for Keegan now.  I am pleading with you, please.  Gray has taken him to the Children's Legacy ER just now.  I tested positive for the flu today, despite getting my flu shot & being an overzealous sanitation freak.  We moved Gray, Keegan, and Audrey to my parents' house when we knew I had a fever yesterday.  Keegan has been crying uncontrollably for over an hour, clutching his leg, is pale and lethargic in between crying fits, and has a slight temp.  His nose is running, but we're unsure if it's from the crying or another reason.  Obviously, he will be tested for the flu, have labs drawn, and look to see if there was a possible complication from the problems we had with his port from Monday.

I doubt I have to explain this again, but Keegan's immune system is extremely suppressed right now.  He is on the same drug given to people during the transplantation surgery; it is meant to wipe you out.  The flu is always extremely dangerous to the immunocompromised, but Keegan is beyond that right now. 

The worst part is I can't be there for him.  I'm terrified and will not be able to forgive myself if he has the flu.  We will update as soon as we know more.  Until then, could you please, please pray...
  • For Keegan - that this is an anomoly, he doesn't have the flu, doesn't have a blood clot, etc.
  • For Audrey, Gray, and the rest of our families to stay well
  • That my fever breaks quickly; I cannot go near anyone until 24 hours afterward. 
Thank you more thatn you know.  Please pass this on to anyone you know who might join us in prayer. 

Tuesday, January 25, 2011

Glo-fil

Thank you so much for your prayers for Keegan's kidney testing yesterday.  It was a loooooong day, and knowing that so many were lifting Keegan up in prayer made such a difference.  We are continually at a loss for words to express how much your support humbles and amazes us. 

We were at the hospital before 8am yesterday.  Keegan went first to the Solid Organ Transplant clinic to have his port accessed and some other labs that were needed drawn first.  Nothing wakes you up and gets the day started out on the right foot like someone sticking a big ol' needle in your chest.  We thought that all went well, but it turned out later that his port might have not been accessed properly first thing that morning.  Then, we checked in to the nephrology lab.  It didn't start off well when we put him on the scale, only to find out his weight was up another half a pound over the weekend alone, despite getting extra diuretics this week.  I won't bore you with the details, but the dye didn't actually get injected until almost 11am.  It was supposed to be a 5 hour test after that.

By the time the 3pm blood sample needed to be drawn, we could barely get anything out of his line.  I lifted his shirt after the nurse had tried a few times to find the dressing, his chest, and his undershirt soaked in blood.  I really don't know what happened, but it wasn't good.  We grabbed the kidney transplant coordinator (whom we unfortunately are already familiar with), and he said we had to take the first needle out and try again.  That worked for that one blood draw, but 30 minutes later, we once again couldn't get any blood from his line.  At this point, we were all frustrated and exhausted and starting to worry that if a clot had formed in his port, we were quickly headed to finishing the day in the operating room....not to mention that we might not get enough samples to complete the test.  The poor nurse running the test started paging anyone and everyone, and we finally got some nurses that were a bit more knowledgeable about ports.  They tried their best to save the line, but ultimately had to pull that needle and reaccess him....a third time.

Let's just say, it was almost 6pm by the time we left the hospital.  We hope we got samples that will work to complete the test.  Keegan lost an inordinate amount of blood betwen the blood draws and failed lines, and I think I have some hearing loss from him screaming in my ear through it all.  He was beyond pale and bruised today.  We are anticipating getting results from the test sometime this week.  Keegan saw his GI doctor today.  He ordered an abdominal ultrasound to be done sometime this week.  We are confident at this point that all of Keegan's doctors are working hard to try to find out what is going on with him lately.

When we get more information, we will certainly share it with you.  In the meantime, here are some pictures from yesterday...
Exhausted after the first half of the day...before the port fiasco.  Good thing he rested up before all that.

Trying to make the best of the situation by playing "Dr. Keegan".  The white plastic under his left armpit is the needle that accessed his port.  The line going into his stomach to the left of his bellybutton is his g-tube, which pumps formula directly into his stomach.

I am continually amazed at the strength and resiliency of this little boy.  After being poked, stuck, and bruised for a good 30 minutes, he sat up, hugged the nurse, and put gloves and a mask on to play.  At the end of the day, he looked at the nurses in the room and said "tank you!"  My heart breaks that this is his "normal", but I try to take my cues from him.  To endure, regroup, put a smile on my face, and thank the staff at Children's that work so hard to try to make him feel better every day.

We will update again soon as we know more.  Thanks again for all your prayers and support.  We simply couldn't do it without you.

Sunday, January 23, 2011

Tomorrow

I suppose I've put this post off long enough.  Keegan has a very big day tomorrow, and I guess, in some way, I felt that not posting about it meant not thinking about it, which would help me not worry so much about it.  Yet, time doesn't wait for you to stop worrying.  Tomorrow is upon us, and as pompous as it sounds, I'd like to think you've been waiting for this update.  Maybe a few people out there have been.  At any rate, I have certainly been putting it off, so here's the scoop.

Keegan will have another day admit at the main hospital tomorrow to have a "glo-fil" kidney test done.  To the best of my knowledge, this involves infusing a dye into his system and then performing a series of x-rays and blood draws over the course of about 6 hours to see the rate and efficacy of his kidney's filtration.  This test will actually give us a percentage of function for Keegan's kidney(s).  We are hoping for anything over 50%, and it is my understanding that 35-30% or below is considered end stage renal failure.

Keegan had his day admit for the IV infusion of the immunosuppression drug and his breathing treatment (a nebulized drug that prevents a certain type of pneumonia that only affects and can be fatal to the immunocompromised) this past Wednesday.  The drug for the breathing treatment is dosed based on weight, and Keegan's weight was up even more on Wednesday.  He is now retaining about 3.5 pounds of fluid. To put that in perspective, it is over 10% of his current weight and almost 12% of his "good" weight.  It would be the equivalent of me gaining about 11 pounds in 2 weeks.  Make a little more sense now?  It's a bit more alarming when you consider that he is eating almost nothng by mouth anymore, save a handful of Goldfish crackers and a bit of pureed vegetables.

That weight prompted some more labs, which once again told us absolutely nothing.  (AHHHHHHHH!!!!! Pardon me...screaming under my breath a bit for a moment....)  Ultimately, fluid retention is usually caused by heart failure, kidney failure, or liver problems.  At this point, we are 99.99% sure his heart is absolutely fine.  He is scheduled for the complete kidney testing tomorrow, and we have added every liver function lab known to man.  We will see his GI doctor on Tuesday, when we can address the liver issue and the fact that his GI problems have yet to improve.  Despite the fact that last week we started him back on the antibiotic that worked from Boston. 

Because of the fluid retention, his team had us give him additional lasix this weekend, and unfortunately, it seems he is not responding to the extra doses as he did in the past.  We actually went back to recording his "ins and outs" (what he takes in by tube or mouth and weighing his diapers) this weekend, and he is clearing less than half of his intake through urine or stool.  We can certainly assume what we think this means, but we will submit what we have recordered through the weekend to his team.  With that and the results of his testing tomorrow, we hope to have a better idea of where he stands by the end of next week.

I doubt I need to say it at this point, but we would be beyond grateful for your prayers for Keegan tomorrow, as we are every day.  To be quite honest, we are unsure what to ask you to pray for at this point.  Healing...good results...results that even make sense...who knows.  I've gotten to the point where I just pray.  For nothing in particular, just for my son and my family.  Romans 8:26-27 tells us:
 Meanwhile, the moment we get tired in the waiting, God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. (The Message)

Perhaps you can tell through the tag in the header of this very blog, but I live each day confident that our God is working through Keegan toward a greater good, whether it will be realized in this life or not.  He tells us that in Romans 8:28...In all things, God works for the good of those who love Him.  Because of that very promise, we do not have to pray for anything in particular.  So, we may pray boldly.  Asking that His will be done, and not be ashamed to hope and pray that our wants are His will.  That He will grant a life and health to Keegan and so many others.  But if it is not, then we can be confident knowing that it is not because of anything we have done or out of ill will.  Because whatever may come, His salvation is imminent.  It began with the birth and death of His Son, and it continues through our lives, struggles, and sacrifices today.  The Lord has a plan for Keegan...for me and for you.  I pray that you know that today.  I try to remember and rest in that fact as much as possible.  And I give my worries over to Him and confess them to you, hoping and praying that in doing so, His will is done.  Knowing that Keegan will and can keep fighting because of our Lord's promise to make it perfect...to make it matter.  Thank you for joining us tomorrow and every day.  There is nothing more we could ask of you.  Really...thank you.

Hot Dog

Not Keegan's best "Hot Dog" dance, but it makes me laugh nonetheless.  I'm not sure if his booty-shaking or Audrey's expression in the background is more priceless!

Friday, January 21, 2011

The Good Stuff

I know I promised an update on Keegan...like a few days ago.  But I just can't wrap my brain around it tonight, and for that, I apologize.  Instead, I feel like posting some of the "good stuff." 

I'm sure you'll forgive me.  ;)

Miss Audrey is already 7 1/2 months old!  Eek!  She is still a happy gal most of the time.  She is a little thing, weighing in at about 15 pounds still, even though she eats pretty well. 

This is her new favorite activity.  She gets so absolutely giddy when she's standing.  We prop her up at the table with someone to "spot" her, and she'll entertain herself for a good 5 minutes.  If she could talk, she'd be yelling (which she's pretty good at already), "oh yeah, look at me!  I'm standing!  Yeah!" 

Audrey takes 4 bottles a day, between 4 and 8 ounces each.  She is eating two meals at the table a day.  Breakfast is not an easy time at our house, as most of Keegan's appointments are during that time frame.  I am still making her baby food in my little baby food cooker.  I get kinda giddy making the food for her and seeing her actually EAT it!!  (Such a change for a child of mine, but hey, I'm not pointing any fingers...)  She likes just about everything so far.  She had asparagus tonight!  Her favorite finger food is far and away Magic Pops, a rice cake thingy I get at Central Market. 

Audrey can do a 360 degree turn on her tummy, inch forward just a bit, and push herself backwards clear across the room on her tummy.  Although, she is not a fan of rolling over still.  This child has abs of steel though and if she is slightly supported, say laying on her back on a pillow, will crunch straight up into a sitting position.  I guess I need to take some ab/core lessons from my infant daughter...

Today, she scooted forward about 2 1/2 feet while sitting up.  I had heard tale of other children being "boot-scooters", and now, I can say I have seen it with my own eyes.  Let me say for the record that at this point in time, I am SO not ready to have 2 mobile children in this house! 

Audrey still thinks it's pretty funny to start "talking" at the top of her lungs or screaming around 4am.  We were so strict about not bringing Keegan in our bed, that I feel so terrible giving in to her just to get a few extra moments of rest.  We probably would have been strict with our first-born, even if he hadn't been connected by 2 or more lines to an IV pole while sleeping most of his life.  The second child though has the capacity to wake the first child if allowed to "cry it out."  Therein, lies the problem.  Let's just hope we can break her of this before it becomes a habit.  (Wait...do I hear snickering out there??...)
 
This one is so much more difficult to photograph these days, so there are less of him to post!  He is still his same ol' goofy and happy self, even if most of his days are spent playing at home with me and Audrey.  He is "talking" up a storm, although we can only understand about 20% of it.  His newest is to give you hugs or ask for hugs, and when you do, he will step back and say, "Tank you, Mama!"  Heart of gold, that one.

Other lines recently overheard:
"Hmm, I wonder..." - when asked how many beads were on a string
"Ok, boss!" 
"You got me!" - as he tackles you from behind
"Oh, Aw-duh-wee" - that would be his little sister
"So mab-a-wus" - Actually marvelous, picked up from the theme to Curious George
And singing so much more too!  Favorites include the Happy Birthday song, the Hello song from school, "Hot Dog" from Mickey Mouse, and the theme song to Chuggington (a cartoon about trains on Disney)

He is growing and learning every day, despite this becoming a more common sight in our house.

I will update all about his current health status this weekend.  He is scheduled for his big kidney test on Monday, so I will explain more about that in the next post too.

I'm much to want most days to think about the trials and stresses in our lives right now, but at the end of the day, these two are really are so much more a blessing than I deserve.  But I think I can go to bed a little easier tonight just by looking at these two cuties and thinking about how much fun they really are. 
Hope you can too! 

Friday, January 14, 2011

Update

Keegan's appointments went relatively well yesterday, even if we do still have a lot of questions and decisions to make in the coming months.  His bloodwork looked wonderful - so happy for that!  Here's what we came away with:
  • Our amazing transplant cardiologist did a ton of research and consulted with several other leading cardiologists about the conundrum that is Keegan's immunosuppression (i.e. the drugs he must take to ensure his body doesn't reject his heart).  She presented it all to me yesterday and sent me home with about an inch tall packet of research to read through this weekend.  But in the end, it looks like we are left with just one option.  No one throughout the country advocated for just using the current IV infusion drug as long-term immunosuppression.  As I've mentioned before, that leaves us with one remaining oral drug.  This particular drug has a tendency to cause ulcers in the mouth and GI tract, and that is something Keegan is prone to and really doesn't need.  But it looks like we will have to try it in small doses and give him secondary protection with a small maintenance dose of steriods.  (Let me try to contain my enthusiasm over that one....grr.)  Again, Gray and I want to be as fully informed as possible about this choice, but the truth is that it doesn't appear we have one.  He will get another dose of the current IV infusion next week, and then we will make a plan for where to go from there.
  • From a kidney standpoint, he looks really good considering everything he's been through in the last two months.  He still has some blood in his urine, but the protein is gone.  His urine is doing a good job filtering toxins, but it does appear he is not adequately producing enough to keep him from losing fluid out of his cells.  This is probably what is causing his weight gain, blood pressure swings, and edema.  He is on a "moderately high" dose of lasix to keep him producing what he is at this point, but we really don't want to have to give him more.  Diuretics are good at helping get the fluid off when you need them, but long-term use can be toxic. 
  • We need to get Keegan scheduled for a more intense kidney test that will give us a better picture of what his kidney function truly is at this point.  We don't know when that will be yet but hopefully soon.  Until then, we will wait and watch and support him with lasix as needed.
  • As of right now, Keegan will not be going back to school in the foreseeable future.  He is too suppressed right now, especially with flu season kicking up.  Even as we wean him from the stronger IV immunosuppressant, he will need to be closely monitored as we gauge his tolerance for the new drug.  We can't say we aren't disappointed, but we aren't exactly surprised.  Given that Keegan's team was so in favor of sending him to school in the first place, we know they are not taking the decision to withdraw him lightly.  We are confident this is the best thing for him for now.  Registration for next year is coming up, but we will need to talk to the school administration before making a decision for that far in the future.  In the meantime, we're looking into some other options to try to keep him learning and growing as best that we can.

You may have seen my update on Twitter or Facebook that as soon as I got back home with Keegan yesterday, I took Audrey to the pediatrician.  We were suspicious of an ear infection, but she checked out fine.  She's just being ornery, I guess!  Or maybe this is her sneaky way of getting to climb into Mama and Daddy's bed in the wee morning hours.  But tell me it's not near impossible to say "no" to this little bed bug!


Speaking of the little Miss, it is time for her to get up from her last nap, so I'll wrap this up.  Thank you so much for your prayers for Keegan's appointments yesterday and your continued prayers and support for his healing and strength.  There aren't enough words to express how much you lift us up during this very long journey.  We couldn't get through it without such a loving group of friends and family.  Thank you.

Monday, January 10, 2011

When Audrey is napping...

Keegan and Mama have some fun in the snow!

Teaching him to shovel snow early

Snowball fight!

When you live in Texas, you have to be a bit creative in finding a sled.  Thankfully, our neighbor, Brian, passed by and filmed us "sledding", since Keegan wasn't quite getting the hang of it alone...

Sunday, January 9, 2011

Weekend Weather

Texas weather - Today it was this...


Audrey's first snow!

Keegan was happy tromping around for a little while...

"What is this stuff hitting my face?!"

He was done once his mittens were wet though!

Our snow bunny in a bunting Chum made for Mama as a baby...

Keegan in the same bunting at 6 months!

But yesterday, it was this...






Who knows what tomorrow will bring?

Keep reading for an update on Keegan...

Update

I hope that I'm better about updating the blog in the new year than once a week, but I make no promises at this point!  It has been another long week in the Harrison house, with some long nights and early mornings thrown in.  There's something to be said for when physical and mental exhaustion meet, but I'm a little too exhausted to figure out what that is at the moment.  So on to the update...and for my own sanity, if nothing else, I think bullet points will work best. 
  • From a GI standpoint, there has been little change in Keegan this week.  Even the days we didn't try to add a new food, he didn't do too well.  The days we did were worse.  So, we just keep our heads down and hope next week will be better.  He is still on 20 hours of tube feeds and eating mainly crackers/dry carbs, fruits, and vegetables.  That is when we can actually get him to eat, of course.  And no, we don't believe the tube feeds are interfering with his hunger or desire to eat.  He only gets about 2 ounces of formula over the course of an entire hour.  Until we see improvement in what is coming out, we aren't going to push him too much or too fast.  We will start concentrating his rate to reduce the overall volume and hours once we see a bit more sustained improvement.  If that is still not evident in the next week or so, we will add the oral antibiotic he has been on before to see if that helps.
  • Over the course of the last week or so, we started noticing a marked decrease in Keegan's urine output.  He never got back to the level he was before the kidney failure, but it was definitely better when we got home from the hospital before Christmas.  Even though he is still on a regular course of diuretics, we slowly saw his urine output decrease, and he started to get more and more swollen.  His blood pressures were creeping up each day, as was his heartrate.  Thursday, Keegan was scheduled for his normal weight check at the GI clinic.  And his weight was up over a kilogram in 10 days (roughly 2.5 pounds).  Obviously, this got us and his medical team a little concerned.  We brought him in for a full set of labs Friday morning, but they looked okay.  Then we called the dietician to make sure we weren't inadvertently giving him too many calories in his tube feeds.  Nope - she calculated that he was probably right at or below his caloric needs daily.  So, we had to assume that the weight gain was fluid retention from his kidneys not clearing enough.  We gave him some extra lasix (diuretic) this weekend to give his kidneys a good "kick in the pants".  We finally saw some nice, big wet diapers last night and through today, and his weight was going back down on our home scale.  We also saw a bit of improvement in his blood pressure and heartrate.
  • It appears that what urine he is making is filtering well enough to keep the level of toxins in his body down.  However, it is also quite obvious that his kidneys are not doing a very good job of producing enough to keep his fluid levels in check.  Both are very important jobs of the kidneys, so we are anxious to speak with his nephrologist this week about what is going on and what to expect.
  • Keegan and Audrey have both developed runny noses, and it's hard to tell whether it's viral or allergies.  It's definitely not helped them get good sleep, and we think Keegan was so tired that he was actually starting to wake up earlier and earlier.  By 10:30am this morning, he was fairly exhausted looking.  We let him take a 30 minute nap then (usually a death-nail to getting him to sleep at night), but he went to sleep on time and fairly easily tonight.  Let's hope this is the start of a better night for all of us.
  • Still no school, but he did start back in at therapy this week.  His speech is improving slowly, but we are at a bit of a standstill with feeding until he can actually eat more.  He started to show some "pretend play" this week.  About a year behind on that one, but his therapists were SO encouraged that it is a step in the right direction.  And so are we!! 
Keegan will spend most of the day at the hospital on Thursday with clinic visits to his transplant team and the nephrologist (kidney doctor).  I don't want to speak about the course of this week's events without consulting with his team, but Gray and I were fully convinced Friday that we were heading right back inpatient.  We were so happy to be able to address the problem at home...for now.  Just one month ago, we were being told that Keegan would likely still be on dialysis, so having to give him extra medications to help his kidney function isn't surprising or the worst situation.  It's just disappointing, to say the least. 

If we are honest with you (and frankly, with ourselves), the wait-and-see is starting to wear us down.  We are and always have been very vigilant in watching for changes in Keegan's vitals, behaviors, and appearance.  That's increased about 500% in the last few weeks.  It's never been easy to ignore that huge ticking time bomb hanging above our heads simply due to the fact that Keegan is a heart transplant patient.  Being paranoid is exhausting anyway, but when the paranoia is actually rooted in reality, it makes it that much more difficult to stay grounded in the good things - our many blessings, the Lord's promises, all of Keegan's progress, Audrey's zeal for life, Keegan's relentless demands for hugs and kisses!!  We are human afterall, and we are prone to weakness.  Thank you for being there to support us when the weakness starts to overcome our gratitude.

I apologize for the long post, and I hope I didn't lose too many of you along the way.  Stay warm and dry out there in this wintry weather.  We will post more through the week as we know it.

Monday, January 3, 2011

So you want an update?

Well, I guess since my last substantive update was over a week ago, it's probably time for a little catch-up.  Luckily, there's not a lot new to report!  We were very blessed to spend our Christmas home and with our families.  Keegan and Audrey both received more than their fair share of toys!  Although the type-A organizer in me secretly (or not quite so secretly now!) loves the post-Christmas purge and clean!  It is good that Keegan received some new things though...looks like he will be putting them to good use.

Keegan was supposed to start back at school tomorrow, but he won't be.  First, we are still waiting on the results from some labs we sent out right before Christmas that will give us some guidance on how the new immunosuppressant is affecting him.  This particular drug is meant to completely wipe out the immune system during the transplantation surgery itself or during an acute rejection episode.  From a long-term suppression stance, we don't want or need his immunity that low.  So not only are we waiting to see where he is at the moment, but his team has to do some thinking to figure out exactly what they are looking for and how to get there.  Until then, he is on lock-down once again - nowhere but the hospital and therapy appointments.

Second, he is still on 20 hours of tube feeds a day.  We still need to concentrate that to less hours off the pump and get him eating a greater variety of foods orally.  Frankly, right now he just isn't that interested at the moment.  He also can't handle much besides crackers, fruit, and veggies yet.  We tried some meat last week and a little peanut butter yesterday without success.  It's going to be a long road for sure.  He started back in feeding and speech therapy today, so at least that will be one way to keep a handle on things and get him out of the house a bit.

Other than that, Keegan is doing alright.  He has been off TPN since Christmas Eve, which has been so lovely.  We've had a nice little break from appointments other than a weekly weight check and chat with GI.  He has been in a pretty good mood despite everything.  Today he looked a bit puffy, especially his left eye.  It's probably nothing, but we are watching him closely as always.  He has a big day next Thursday with a full cardiac work-up and nephrology appointment. 

In more fun news, we received this in the mail last week!  The Cowboys published a two-page spread of the picture of Keegan and Tony Romo in the game program from December 19 against the Redskins.

Just love that picture...it's so much funnier when you know how absolutely miserable he was before and after that little moment with Tony and Miles Austin.  There was also a smaller picture of Keegan and I with Mrs. Jones in the back in an article about all the holiday happenings the Cowboys participated in.

Miss Audrey has been doing well too.  She started some finger foods and just loves to sit in the high-chair "eating" while Keegan is at the table eating his food. 

She also is loving spending time with her Daddy.  She bundled up with him to go on a walk on New Year's Eve.  And he sure can make her laugh...(too bad wearing her Baylor gear for the bowl game didn't help us at all!!)


Thank you once again for your love and support for our family.  We certainly hope you all had a wonderful, safe, and relaxing start to your new year!  2010 was filled with so many blessings for us, and we pray for more in 2011 for our family and yours.

Saturday, January 1, 2011

Welcome 2011!




For I know the plans I have for you, says the Lord,
plans to prosper you and and not to harm you,
plans to give you hope and a future.
Jeremiah 29:11