Friday, April 29, 2011

Home & Waiting

Keegan came home late last night.  He had some significant bleeding and pain from the biopsies, and he didn't sleep too well.  Today showed an improvement in his energy levels, if nothing else.  He had labs drawn this afternoon, but we don't have results from them yet.  At the moment, he is sleeping fitfully, and it's difficult to tell whether it's related to pain or bad dreams.

The scopes showed some irregularities...of course, just not in a way that tells us what's wrong initially.  There were many parts of his colon that were irritated and inflamed, and one part in particular, the cecum, looked the worst.  The doctors took many biopsies of the different areas.  It was a non-specific irritation, meaning basically that we don't know what, if anything, it means until the biopsies come back.  Based on Keegan's history, we can anticipate that even the biopsies may not tell us anything definitive.  Just  another piece of the puzzle.  You can read the link I included by clicking the word "cecum" above, and if you know anything about Keegan's mucousy diarrhea/pain/fast transit/etc, this finding has the possibility of telling us something.  Still, we are not pinning all our hopes on it.  To make matters more complex/interesting, the cecum literally sits right in front of the right kidney.  Keegan's right kidney is significantly larger than it should be, since it has taken on the burden of his non-functioning left kidney.  We are unsure if they have anything to do with each other at this point.  Another puzzle piece.

The initial biospy results should be back by Monday morning.  Electron microscopy will take longer.  We have a few things to discuss with our transplant team, but the only remaining test we could run here would be a CT scan of his abdomen.  It might not be a bad idea at this point, but we will see what the general consensus is by next week.  Barring that, we will start talking to our team in Boston and possibly a group in Cinicinnati next week once the biopsies are back.  We know that this trip is 99.9% likely, and we'd like to get it over with fairly soon. 

That's about all I know right now.  Keegan was supposed to go to cardiac clinic in addition to his normal appointments next week, but due to some scheduling conflict, that has been rescheduled until the following Monday.  As for now, we are just waiting.  Like much of our lives, just waiting to see what we will learn or what will change or what we can do.  We appreciate so much your support the last few days and during this trying time.  Thank you, thank you.  More as we know more.

In the morning, Lord, you hear my voice;
in the morning I lay my requests before You and wait expectantly.
Psalm 5:3


Wednesday, April 27, 2011

Here we go

Keegan was admitted to the hospital just after lunctime today to prepare him for his upper endoscopy and colonoscopy tomorrow.  In an attempt to provide a better picture of his colon, he is being given a solution through his g-tube to "clean him out."  This needed to be done in an inpatient setting due to his renal problems and TPN-dependency.  His doctors wanted to be able to monitor him closely through this process.  As much as we didn't want to be inpatient, we certainly wanted to not create a bigger problem or have to delay the test any longer.

We stopped his minimal tube feeds around 4pm and started the Go-Lytely around 5pm.  As was expected with Keegan, it didn't take long to start working and well frankly, it hasn't stopped.  He doesn't have any formed stool in him, nor does he really get any substantive amount of formula throughout the day (around 220cc or a little over 7 ounces per day).  We didn't think it would take that long to finish it up, considering those two things.  We were wrong.  Still going.  It's not entirely surprising for Keegan.  His system always seems to be in overdrive, producing something when nothing is there.  We've seen that since the beginning.

Poor buddy.  His little bottom is raw, and his belly is enormous.  They have to run the solution at an extremely high rate, which he is absolutely not used to having in his system.  Thank God, he hasn't thrown it up.  That would be the only thing worse than this right now.  We are praying that by midnight, the desired effect will have been reached, and he can have a break the rest of the night.

Keegan is scheduled for these procedures and biopsies tomorrow around 12:30pm.  Hopefully, he won't get bumped on the schedule.  We are hoping to have initial results on the biopsies by the beginning of next week.  The electron microscopy will take several more weeks.  We will start working on a trip to either Boston or Cincinnati late next week once initial results are back with the anticipation of travelling within the next two to three weeks.  I'm not holding out much hope that we will learn anything from these tests whatsoever.  We never do.  Even when he is falling apart clinically, the tests never show us anything definitive.  I suppose one can always hope for a miracle.  I hate to admit that I have pretty much given up on that though.

For the ump-teenth time, we appreciate your prayers and support for our Bug so very much.  We will update with more news tomorrow.  It's going to be a long night here.  Hope everyone else out there is able to get some sleep!

Monday, April 25, 2011

Easter Fun

A week ago, the "Easter Bunny" (aka Aunt Alex, who graciously borrowed a costume and played along) came to dye Easter eggs with Keegan. 

Very excited to make the dye...after that, things got a little dicey.

Ready to help decorate after calming down a bit.

Audrey says, "Hey, I think I like the Easter Bunny.  She's pretty cool!"

Go on, admit it.  You're super jealous of our uber-egg-decorating skills.

Having fun with Pops on Saturday before Easter.

Fun times with the family, including Great Aunt Keva and Oma.

Posing in their matching outfits with Daddy

The Easter Bunny must have thought Keegan's future was bright...cool shades in the basket on Easter morning.

"I told you that Bunny was cool!  Look at all my loot!"

All dressed up for Easter Sunday.
We weren't able to attend Mass due to Keegan's health, but we had a lovely day anyway.

Goofballs!

With Mamie & BD



Let the hunt begin!

"Hey Poppy!  You see any eggs over there?"

Don't go to the eggs.  Make the eggs come to YOU.

Hunting for eggs can be so frustrating!

Cascarones!

Aunt Alex and the Ladybug

"Helping" Mama get all the confetti from the cascarones out of her hair.  Gee, thanks.
Evaluating his loot.
It's tough stuff coming up with things to put in the eggs when you can't eat candy!




We hope you each had a very blessed Easter.
Rejoice!  He is Risen!

Sunday, April 24, 2011

Overdue update

At the risk of sounding redundant, I'm not sure where to start this post and apologize for not doing so earlier.  (Oh, that was redundant?  Well....oops.)  I really should try to even post small updates on a more regular basis because waiting just makes the task that much more daunting.  Complaining about and apologizing for it doesn't make it go any easier, so here we go...

  • The Port:  This was arguably our biggest issue of the week.  (As a refresher, this is an embedded IV in Keegan's chest that is accessed via a large needle and used to administer TPN, IV infusions, draw labs, etc.)  Tuesday we ended up spending a good portion of the day downtown consulting the transplant team, hematology/oncology, surgery, and the patient education nurses on the GI inpatient floor.  In the end, the overall consensus was to give it more time.  The dye study can be difficult on the kidneys, and Keegan's team reasonably had reservations about taking that step.  Still, every day brought more blood and discharge/TPN into the needle pad and dressing.  I think we had to reaccess him about 4 times throughout the week, with Gray and other friends or family members holding him still while I had the horrid job of actually putting the needle in.  By Friday when we went to GI clinic for his weekly labs and still saw blood in the dressing, it was decided (of course at 3pm on a Friday) that the dye study was, in fact, needed to rule out some damage to the actual port, rather than the tissue/muscle around the port.  If there was damage to the port, the only way to fix it would be surgery.  So, here we are at the end of the day and week, waiting on yet another test to tell us if Keegan would be headed into surgery and another inpatient stay.  Thankfully, the dye study showed the port itself was working well.  We reaccessed him one more time that night, and (knock on wood PLEASE as you read this) all seems to be going better over the weekend.  We haven't had to change the dressing or needle, and we are hoping it was just time that was needed.

  • GI: No change really.  He is still 100% TPN (IV nutrition) dependent, receiving only minimal tube feeds per day to prevent atropy of his stomach.  The barium used in the small bowel follow-through from earlier in the week causes most people to be contstipated for a few days.  Not Keegan.  This week has been bad for him, but the volume of output seemed to slow down a bit the last few days.  He seemed to be in some pain this morning, and Gray and I think there was defnitely some blood in his diaper.  We are hoping it is irritation related and not a bigger problem.  We should find out later this week because ...

  • Scopes: Keegan will be admitted on Wednesday morning for an upper endoscopy and colonoscopy on Thursday afternoon.  This will allow his doctors to get some pictures and biopsies of his stomach, colon, and parts of his intestines.  We anticipate the biopsies will also be evaluated using an electron microscope to get an even clearer picture of what is really going on in the cells of his intestinal lining.  Frankly, that's a lot of fancy speak for a last ditch effort that we don't expect will provide much insight.  Even at his worst, we rarely learned anything from these scopes.  But we have to rule everything out at this point.  Since Keegan's procedures aren't scheduled until the end of the day on Thursday, it is likely that he won't be discharged until Friday. 

  • The Point: At the suggestion of our doctors here and in Boston, we are "crossing the Ts and dotting the Is" by repeating the standard GI testing that hasn't been done since the spring of 2009.  We want to make sure that when we travel with Keegan for a second opinion and/or treatment, we go with current test results in hand.  Once we have all the results (by end of next week maybe?), we will consult with our doctors and decide what the next step will be.  We will end up either in Boston or Cincinnati.  What we are unsure of at this point is if we are going for treatment or just a better way of managing his current issues.  We are fully aware that, in all likelihood, we still won't end this with a true diagnosis, but we can't give up just yet.
So, I think that's a good summary of what's going on and coming up.  Therapy and pre-op tomorrow and Tuesday; inpatient rest of the week.  We are praying for more answers but at least no more questions as we round this up.  We had a nice Easter here with family, and I will try to get pictures of that up tomorrow. 

Once again, we can't say enough how much we covet your prayers for our Bug.  He is a fighter and stronger than I could ever long to be.  He showed that time and time again this week.  We are continually blessed by his spirit and by your support for us during these difficult times.  For now, we rejoice in the Resurrection of our Lord and in the promise that He brings.  This suffering is not in vain, and He will make it, as all things in Him, glorified in His time.  Happy Easter to each of you.


We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope...
 You see, at just the right time, when we were still powerless, Christ died for the ungodly...
God demonstrates his own love for us in this:
While we were still sinners, Christ died for us.
Romans 5:3-4, 6, 8

Friday, April 22, 2011

Booty-Scootin'

Witness the booty-scootin' talent of one Audrey Harrison.  And to think, I figured she would be the normal one!  She also seems to have inherited my habit of biting my lip while concentrating.  I'm so sorry, ladybug.

Monday, April 18, 2011

Is it really just Monday?

I kinda wish I knew how to start this update.  It was not the best of days today.

We started with the upper GI and small bowel follow-through.  That was only after a very long, sleepless night by all four members of our family.  But I digress.  The test itself went fine.  As we expected, we didn't exactly learn much from the test itself.  This test is usually used to look for obstructions and malrotations.  We ran it in hopes that we would learn something about the transit time of Keegan's intestines.  However, since that's not the overall purpose of the test, we really don't have a standard to compare Keegan to that would give us a better understanding of what his body does.  All we can do is ask the radiologist to compare what she saw to other children she and the department have run on other children.  The test should generally take several hours.  In fact, the latest time you can schedule the test is 9am due to the fact that it "could take all day to run".  Some of the barium we gave Keegan, however, reached his colon in less than an hour and half.  To make matters more interesting, only about 30% or less of the contrast left his stomach.  We vented the rest back out of his stomach through his g-tube at the end.  Yet another Keegan anomaly. 

When the test was pretty much over, the radiologist went out of her way to really discuss Keegan's history with me.  We talked about his past, what problems we were experiencing, and the unconventional reasons we were running this test.  She didn't have an extensive amount of experience with this particular test with which she could compare Keegan's results, but she said she would make every attempt to consult with her colleagues about his results.  I was pleasantly surprised but not holding out a lot of hope for that promise.  We should have the official report and be able to discuss the results with our GI doctor by Wednesday.

The rest of the afternoon involved the onslaught of Keegan voiding the theoretically small amount of barium we pushed.  At one point, both of us had to change clothes, and he had to take a bath to get clean.  When I got everything and him cleaned up, I noticed that the dressing on his port needle was loose.  We were going to just replace the dressing so that we didn't have to stick him again.  But once we got the tape off, we noticed that once again, there was quite a decent amount of blood and some other type of discharge surrounding the needle (not sure if it's TPN or something else). 

Right before his bedtime, we were able to get in touch with the transplant team.  We reaccessed his port one more time so that we could run his TPN overnight.  We are unsure why he is having these continued problems with his port.  It could be trauma from his fall on Friday or a change in tubing that we have been dealing with or a combination of the two.  At any rate, we will have to make an impromptu trip downtown to consult with his doctors about what's happening.  They said tonight that it is possible we will need to have a surgical consult and run a dye study of his line to rule out a bigger problem. 

We will update again tomorrow.  Still no word from the scheduler for his scopes, but maybe we can push that a little while we are at the hospital tomorrow.  We will update again when we know more.  Thank you, as always, for your support and prayers.  We get through each day knowing Keegan is being lifted up in prayer. 

Unfortunately, it is really just Monday, and this week is just going to get longer.  But at least I can end with a few pictures of these cuties to brighten my night...and maybe yours too.


About to steal Puppy from Keegan...ohh, sneaky girl.

 For some reason, Audrey adores putting the flags from Keegan's racetrack in her mouth.
I can't explain it, but it sure is cute!

 Playing together.  Funny how old toys become new again when gifted to your little sister!

Puzzle time for the Bug

Sunday, April 17, 2011

Whew

That's my general sentiment at the end of just about everyday and when sitting down to think about writing this post!  The "plan" from the last update is still in place, but not all the pieces have been set into motion yet. 

Here's a little breakdown of the last five days:
  • Keegan's abdominal x-ray on Wednesday morning showed that he was, in fact, full of his usual diarrhea.  This caused a touch of concern.  First, why wasn't he able to void it as usual, and second, the risk of bacteremia arising from stool sitting in his colon.  We decided to stop the prescription-grade probiotic we had started the week prior, in case it was causing a translocation of bacteria or any other adverse side effects.  Then on Thursday, we gave him an extra dose of a medication to help him empty.  Let's just say the effects were immediate....and not pretty.  Read on.
  • The rest of Wednesday was spent at the hospital getting infusions, a breathing treatment, and a new needle in his port.  It was supposed to include labs, but in a truly exhausted lapse of coordination on my part, we forgot those.  Which necessitated a return trip to Children's on Thursday.  Sigh.
  • By Thursday, we decided to give Keegan a little help in getting things moving, so to speak.  He was already having a rough week and not feeling up to par.  Most mornings, it was difficult to get him moving.  He would spend most of the day lying on the floor or couch with his puppy and blanket.  The brunt of his GI problems hit while we were at the hospital Thursday afternoon having labs drawn and meeting with his doctor, since he was clearly not himself.  His labs showed he was probably fighting something viral, so all we could do was wait it out.  I guess if you're going to have a big blow-out, it might as well happen in the GI doctor's office.  We must have looked highly amusing as I shuffled Keegan out the door in dirty clothes, holding his pump, and Audrey screaming because she was WAY overdue for her lunch.  Double sigh.
  • Friday, things were seemingly on their way back to Keegan's version of normal...until he fell off the office chair while playing before bed.  We kissed the knee he was clutching afterward and thought all was fine.  After his bath (you know, about 10 minutes before he usually is sound asleep), we notice his port needle is dislodged, not working, and bleeding.  We called one of our wonderful neighbors for an extra set of hands and were able to get him reaccessed quickly.  Crisis one averted.
  • The weekend was rather calm, except for a visit from the Easter Bunny (aka Aunt Alex) to dye eggs.  Keegan was not very keen on just about every part of the dyeing process, but we made it work.  (Pictures to follow shortly.)  I have to say, it was beyond frustrating that we could not even enjoy a traditional holiday craft that children his age should be able to do.  I know he has had so many challenges and not to expect anything grand.  I just wish every little thing wasn't such a stark reminder of where he is, where he should be, and what he's been through.
  • This morning, we realized his port needle was soaked with blood and drainage.  It appears that there was some trauma from his fall on Friday, but we once again were able to get him reaccessed with a little help from Big Daddy.  I hate sticking a needle in my son's chest, but I really hate having to do it twice in three days.
As you can probably tell, I'm not exactly in the mood for that long-awaited detailed post I keep talking about.  This is about as good as you're going to get for now.

Ok, so that's the low-down on the last few days.  Tomorrow Keegan is scheduled for an upper GI and small bowel follow-through floroscopy.  We have to be there at 8:15am, and with Keegan's delayed gastric emptying, we could be there all day.  This won't make sense to many of you, and for that, I apologize.  We have noticed a severe increase in the amount of residuals vented out of Keegan's g-tube the last few weeks.  He is only receiving 10ml over the course of an entire hour of elecare formula feeds.  So, theoretically, he should never really have more than 5ml or so in his tummy of formula and/or gastric acid.  At any given time, he has more than 40cc in his tummy.  Where is it coming from?  Is it mostly formula or is bile coming up into his stomach from his intestines?  We're not sure, but that is a major issue we're trying to unearth in the upcoming tests.

I anticipate a call from the surgical scheduler tomorrow to get a date for Keegan's upper endoscopy and colonoscopy with biopsies and electron miconography.  (That's a mouthful.)  When those are over, we may repeat his gastric emptying study.  At the end of all these tests, we will see what we have learned, if anything, and decide where to go or what to do at that point. 

At the risk of sounding like a broken record, we would greatly appreciate your prayers for clarity and information from the test tomorrow.  We are so used to and tired of knowing something is clearly wrong with Keegan and not having test results to tell us what it is or how to help.  We are doing our best to advocate for Keegan and take every step to improve his quality of life.  Without a clear idea of how to do that, we feel we're sinking in the quicksand of his care.  The next week or two are going to be busy and trying, at best.  We are so thankful for your support and prayers during this time.  I will try my hardest to keep this blog updated as we learn (or if we learn) anything.  Thank you again.  We are beyond blessed and humbled by your love and compassion.

Tuesday, April 12, 2011

A New Plan

Today was quite productive in getting a plan put in place for addressing Keegan's GI problems.  We started bright and early with a phone conference with our team in Boston.  After tossing around some ideas with our GI doctor there, he contacted our doctor here in Dallas before Gray and I met with him this afternoon.  It was agreed that Keegan is best described at this point as being in intractable intestinal failure.  We have decided to do all the major testing that needs to be done and/or repeated here before actually making the trip.  This is a wonderful development.  We will be able to do all the testing and anesthesia at the comfort of our "home" hospital with our trusted anesthesiologists.  We will be home together for Easter, and we hope that this collaboration between different experts will enable us to stay home through Audrey's birthday.  If we are still at a standstill at the end of all the testing available here, then we can travel, knowing that we won't be wasting time waiting for procedures there that could have been done here.

The first thing we are going to do early tomorrow morning is an abdominal x-ray.  You see, the child who has had chronic diarrhea his entire life has now been constipated for four days.  This is the fourth time in the last four months Keegan has had a drastic swing from extreme diarrhea to constipated.  Unfortunately, we know that what is in him is loose, so why isn't it coming out now?  Are we now dealing with some kind of paralysis of his intestines happening now or what?  We will be looking to see what is there and deciding then what the next step is.  This was part of the reason we initially thought Keegan needed a motility expert.  We anticipate Keegan will be scheduled for an upper endoscopy, colonoscopy, small bowel follow-through, and gastric emptying study in the next week or two.  It is possible he may need an MRI of his abdomen or a CT scan after that. 

We are trying to look at this problem that has plagued him for almost four years with fresh eyes, and luckily, it looks like we will be able to start from home for now.  What frustrates me is that, once again, it seems we had to threaten leaving to get action.  We will take what we can get for now.  Being TPN dependent and the need to have more immunosuppression options available to us, puts fresh urgency on "solving" the puzzle that is Keegan.  We have not ruled out the need to travel to Boston or Cincinnati for testing, consulting, or working with an interdisciplinary feeding team.  We're just hoping to take recent test results with us when we go. 

We're not sure what we will come up with this time, if anything, but for now, we're happy to have the stress of having to coordinate a big move on hold for now.  In other news, Keegan has been tolerating the med change decently so far.  We are pretty sure he is starting to develop some mouth ulcers from the rapamune, but we will have to give it some more time to see how bad it gets.  This morning was quite worrisome, as Keegan literally would not get up out of the chair until almost 1pm.  He asked several times to go back to bed and even once asked "doctor?", like he knew something wasn't right.  All his vitals were normal though, so we held tight.  I dragged him to therapy around 1:30pm.  He fell asleep in the car, but by 3pm, he seemed to be acting much more normal.  Who knows what was going on, but it was nerve-wrecking to say the least. 

We will update tomorrow after we get the results from his x-ray and know what steps will be scheduled in response.  It will be the beginning to a long day with his monthly day admittance for his infusions, labs, needle change, and breathing treatment too.  We just can't repeat enough how much your prayers and words of encouragement mean to us.  I can't possibly imagine doing this without the reassurance that Keegan is constantly being lifted up in prayer.

We don't feel as if we've had a chance to catch our breath or get a grip on anything in regards to Keegan's care in the last six months.  There are so many aspects of his overall picture that are changing, and unfortunately, not in the positive way we would have hoped.  The next six months are going to be just as strained with a renewed assessment of his intestinal issues, immunosuppression medication challenges to protect him from rejection, and perhaps most anxiety-inducing, repeating his kidney function testing.  I have so much grief and at times, pure agony, built up in me as we walk this newest challenging road.  That is a post for another time though.  For now, I take comfort knowing that we will be in our own home at least for another few weeks.  Thank you again for lifting us up through this difficult process.  More tomorrow as we take the first steps.  Thank you.

Monday, April 11, 2011

And then there was Audrey

Poor Miss A seems to get left out of this little corner of the bloggy world too often.  It's almost always about Keegan, and when time alots, well...then there's Audrey.  That is rarely the true case in our house most of the time though!

If you can believe it (which I truly have a difficult time doing), Audrey is 10 months old now!


Audrey, you are doing so many fun things!

-  You weigh about 16 1/2 pounds, wear size 6-9 month clothes mostly, and still a size 2 diaper.  You have darker hair than your brother did at this age. It definitely is a true auburn, deeper red than his orange-ish red.

-  You can clap your hands, play peek-a-boo, play "SO big!", wave bye-bye, and shake your head "no".  Here you are showing off some of your talents.  (Apologies in advance for the poor, one-handed filming job and the annoying mommy-speak.)



-  You have 4 teeth.  Two on top, two on bottom.  Those top two were not nice to you making their appearance.

-  You still take 4 bottles and two naps a day.  You're starting to fight the last nap, so one nap might be in your future in the next month or so. 

-  You sleep pretty well overnight most nights.  You wake up within 10 minutes of 7:30am almost every day.

-  You eat three meals at the table a day.  And boy, can you eat!!  Funny since you're such a little thing.  Your poor ol' mama hasn't ever had to feed a healthy baby before, and you amaze me every day.  Pureed food has given way to any regular food we put in front of you.  You love most carbs, cheese, meat, fruits, carrots, peas, green beans, yogurt, pasta, and thanks to living with your Mamie and B.D. for most of the last month...cookies. We can cut up just about anything into little bites, and you will try it.  Random foods you like include hummus, guacamole, and refried beans.  Your two favorite purred foods are still spinach and broccoli.  Go figure!

-  You prefer to eat your cut food off of a fork than with your hands.  Always a little lady.

-  You prefer to drink out of straw cup than a sippy cup, probably because you do it all by yourself instead of Mama having to lift it for you.  You drink only water or formula by cup, but milk is coming up here in just another month!



-  You are officially mobile.  Watch out world!  Your brother had the "peg-leg" crawl.  You still prefer to boot-scoot, but you're awfully quick about it.  You extend your hands out in front, then pull your bottom forward.  (Video to follow soon!)

-  You can pull to a stand most of the time and like to pull up onto your knees to reach into any basket, cubby, or nook you see.  Preferably ones that do not belong to you.

-  You talk...a lot.  Mostly babble, but you do say "dada", "mama", "bubba", and "bah-bah" (bye).  You have a penchant for blowing raspberries and testing the decibel limits of whatever room/car/place you find yourself.

-  Your favorite time of day is absolutely, 100% bath-time.  You can move around the tub and stake your claim to any tub toy you want.  You particularly love to hold your little hands under the running water as the tub fills up.  But your truest love of all is the little sugar shaker from your tub-time tea set.  Daddy has to let you hold it even through getting you lotioned and pj-ed.

-  You are the smiliest, giggliest little girl most of the time.  However, you've recently hit a shy stage and are not the uber-performer your brother was at this age.  You are apprehensive about other adults, even ones you've known since birth, like Keegan's doctors and nurses at the hospital.


-  Your brother is your favorite person in the whole wide world.  You give him hugs and kisses and follow him around like a little puppy dog.  You want any toy he has at the moment.  I've never seen your eyes light up the way they do when you see him for the first time after being separated during an inpatient stay.  You hate anyone who is poking him or making him cry.  You love him with your whole heart, and it shows.



I worry too often that Audrey will come to resent Keegan's illness, to feel that she is not as important because she is healthy.  I worry that she will forget me or not have as strong of a bond with Gray or me because she has been and will be separated from us so much due to hospitalizations.  Projecting my fears on her does nothing but underestimate her potential.  Audrey has already shown to be a resilient, strong, courageous, tough, and yet, easy-going little girl. One day (even some months or years maybe), she will come to us and say those very words. She will grieve the loss of not having her own normal childhood.  The things she isn't allowed to do because of him.  And that's ok.  We will deal with it in it's own time.  She is allowed to feel that way because it's not fair.  But I do hope and pray that Audrey's love for Keegan will overshadow all of those feelings.  I hope she knows we love her to the ends of the earth.  She is one precious miracle.  An absolute blessing, and we are so very happy to call her ours.

Sunday, April 10, 2011

News and a picnic

I really, really do promise that one day soon I will have time to sit down and write an update that is in depth and detailed.  After getting the kids down, eating dinner, cleaning up, pulling meds, making formula, mixing TPN and lipids, hooking Keegan up, and doing anything else that needs to be done...well, I just am not as up for a big, long post at 11pm.  Especially when I have to be up in a few hours to take care of Keegan again. 

So, here's the scoop:
  • Keegan had cardiac clinic last Thursday.  His heart looks great and strong, as always.
  • His kidney is stable for now.  We are going to schedule another GFR for the end of June.  This time, the goal will be to keep his function above 50%.
  • We went ahead with the anticipated medication change.  Rapamune and steroids were started yesterday.  Two doses in, and we haven't seen a drastic change yet.  Here's crossing our fingers for more of the same.
  • GI.  Sigh.  This is where things get tricky.  It's bad...really bad.  Gray and I have a conference with Keegan's doctor here on Tuesday.  The gist of the conversation is where to go next.  Keegan needs to see a gastroenterologist that specializes in motility disorders.  The two leaders at this point are Boston and Cinicinnati.  Once we meet with GI on Tuesday, I will go into more detail about our decision, but until then, we would appreciate prayers for wisdom and guidance.  It will be difficult, but we are anticipating and hoping to make this trip in the next 2 weeks.  Audrey's birthday is coming up at the beginning of June.  The sooner we get Keegan where he needs to be, the sooner theoretically we can bring him home.  Ideally, in time for her birthday.  This is a very, very big decision for us.  Again, we would greatly value your prayers for our family as we navigate these waters.
I know some pictures are long overdue.  Today was the annual transplant picnic.  This was the first year all the transplant groups from Children's came together for the picnic (heart, kidney, and liver/intestine), so it was a little different.  Because of how Keegan has been feeling, we almost didn't go.  But we pulled together and ran out at the last minute.  It was different not being with just our heart kiddos, and the turn-out because of the change wasn't quite what it used to be.  Still, it was nice to get out and enjoy the company and weather.



The annual group shot

Miss Melanie (Child Life) helping Keegan have at the pinata!


Audrey and Brynn (15mo, transplanted almost a year ago on Mother's Day)


I plan on a post tomorrow all about little miss Audrey.  She is a firecracker, and she keeps us laughing all day long.  Tuesday is our big decision day, and Wednesday is Keegan' monthly day admittance to the hospital for his infusions, labs, breathing treatment, and needle change.  And of course, don't forget three days of therapy visits.  Whew.  Here we go!

For now, we are soldiering forward, strengthened by your prayers and support for our little Bug.  We pray the Lord will grant us the wisdom, peace, and guidance to make the best decisions for Keegan and our family.  The ground may be uncertain, but our faith is not.  He has Keegan firmly in His hand, and that is all we need.

Indeed, the very hairs on your head are all numbered.
You are worth more than many sparrows.
Luke 12:7

Wednesday, April 6, 2011

In the moment

That pretty much sums up how our days have been lately.  Living in the moment and trying to get through each day.  There is no getting ahead at this point.  My only sense of accomplishment each day is if I don't end up feeling as if I've actually lost ground.

And it's not going to get any better in the next few days.  Keegan has his transplant cardiology appointment tomorrow.  He will have the standard testing - labs, EKG, chest xray, echo, etc.  But the big kicker is that we are anticipating the team will order the switch to the last available oral immunosuppression medication, in combination with steroids.  It could go absolutely fine, but it could also end up being an epic fail.  This particular medication, rapamune, is known for oral ulcers and GI complications.  If you're going to have either of these side effects, they generally manifest within the first 48 hours.  Steroids are hard on your GI system too.  And Keegan is the furthest thing from being in a good place from a GI standpoint than I could possibly imagine.  But we know we have to try this last combination.  What happens if Keegan can't tolerate this drug is yet to be determined.

As if Keegan's beyond suppressed immune system needed another challenge, it appears I picked up some kind of viral runny nose/congestion combo at the hospital while inpatient last week.  Audrey started suffering with it on Sunday night, but neither she nor I really suffered.  It has been more of a nuisance to us.  Keegan's nose started running just this morning.  He's been in bed for less than three hours, and he can hardly breathe.  Most nights between wake-ups, pumps, and diapers, I sleep on average of 3 to 4 hours.  Looking like less than that tonight and an extremely early morning to make it to downtown Dallas by 8am.  Sigh.

So, please keep Keegan and our family in your prayers the rest of this week, if you would be so kind.  We are going to need all the patience and strength we can get to get through Keegan's normal issues, his illness, and this med change.  I know I keep promising that I will write a more in-depth update about how things are going.  I hope that the very title of this update hints that I just don't have the energy to go into detail about it all right now.  I think I'm partly guarding myself from it.  If I don't put it down in writing, I can avoid it all for a little longer.  So, grant me a little more time for that deeper, reflective post.  We truly are living in the moment and getting through each day.  Not having a long-term plan for Keegan's care makes that even more difficult to come to grips with.  But for now, we are trudging onward, enjoying the highlights each day brings and depending on each other to get through the challenges.  Thank you for hanging on with us through this season of our lives.  We appreciate your prayers and support so much more than you know. 


I consider that our present sufferings are not worth comparing with the glory
that will be revealed in us.
Romans 8:18


Sunday, April 3, 2011

A Thank You

Keegan came home Friday afternoon from the hospital, yet again.  His blood cultures thankfully never grew out any bacteria.  Who knows what that fever was about.  We had a very reassuring discussion with neurology on Friday morning that convinced us that waiting to close the PFO does not pose any greater risk to Keegan.  Our transplant team said that maybe by September after next (2012), Keegan will be big enough to close the PFO during his usual annual heart catheterization and biopsy. 

Keegan has a GI appointment on Wednesday and a full cardiac work-up on Thursday.  We are anticipating trying him on the last available immunosuppression medication on Friday, along with a maintenance level dose of daily steroids.  Generally, the negative side effects from this medication manifest within the first 48 hours, so next weekend will be very trying for us.  More about that later in the week though.


For tonight, we just want to extend our heartfelt thanks to those of you who cyber-walked, donated, or actually went out and did 3 miles in Keegan's honor on Saturday for the Keep the Beat 5K.  Y'all raised $995 for congenital heart defect research and awareness in only ONE WEEK!!  Amazing!!  Thank you so very much.  Our actual total may be a touch higher.  We will let you know if it changes.  Every penny counts, and we feel so very blessed that people felt called to donate or walk in Keegan's name.  Thank you. 

I have to repost my friend, Lauren's comment from Saturday morning.  I was in tears reading it.  I know the strength and courage my son and so many other brave little ones show daily has changed me.  To hear how he has changed some of you gives me the determination to keep fighting for him and everyone affected by CHD and transplantation - today, tomorrow, and every day after that. 

Dear Keegan,

I didn't really feel like getting out of bed to run 3 miles this morning. I felt sluggish and tired and the coffee I was sipping in between sleep breaks wasn't doing much good. I seriously considered just staying there, warm and cozy, and messing around on the internet until I had to go to work. But then I thought about how much you and your family go through every day that you don't really feel like doing, or taking care of, or being part of when you would so much rather just be at home, snuggled up on your couch and suddenly my desire to stay in bed and not run a measly three miles seemed insignificant and lame. So I got out of bed. And I put on my shoes. And I thought about you. And I ran. And I felt better. I hope you feel better today too, because I only feel better thanks to you. Lo.