Saturday, June 29, 2013


Just a quick note to say we are all ok and still at home.  Keegan's blood culture from the ER last Saturday (after the second chewing incident) grew back a type of strep that was rare enough that our transplant team hadn't ever heard of it.  Infectious Disease said it is normally found in the mouth.  Well, duh.  Since labs looked ok and he was clinically stable at home, they just ordered one more week of IV antibiotics (read 5 different IV medications now).  We are running the last dose of IV antifungal right now, so at least starting tomorrow we will be down to four.  Then if all goes well, down to the usual three by the end of next week.

On Monday, we attempted to let him carry his TPN around in his old rolling backpack (nicknamed Monkey for the stuffed monkey strapped to the front).  It went well until mid-afternoon, when he once again tried to put the curly tubing in his mouth.  ARGHH!  No break this time, but it was enough to realize that maybe the curly tubing needed to go away completely.  So now we are loading it into his old feeding pump backpack.  I hate that he has to carry it around on his back all day, but it gets the tubing out of his way altogether.  Maybe one day he'll learn to leave it alone.

Audrey had camp at her new school this week, and she loved it.  We had a little run in with the realities of a "real" school, rather than a Mother's Day Out program.  Audrey had a few reactions to hummus as a baby.  Her pediatrician told us she was allergic to sesame (tahini paste in hummus is ground sesame seeds), and we just avoided it with her since then.  So we list it as an allergy on every form from school, only to be told the night before the first day of camp that she will not be able to eat the school-provided snacks and will need benadryl and an epi-pen at school.  Well, it was a "kids in the kitchen" type week at school, where they were making their own snacks.  All sweets (which was another ball of wax for me altogether when there are so many healthy alternatives), none of which involved sesame.  This child has a sweet tooth, so we knew that telling her she couldn't eat the snack everyone else was having would not fly.  Nor had we ever been prescribed an epi-pen for her.  No one assumed her sensitivity was that severe.  At any rate, we worked it out.  She now has an epi-pen and an appointment next month with an allergist to fully explore any food allergies.  Not quite the foot we were looking to start out on with her new school, though!

She'll tell ya alright!
In her camp shirt one day before school.

My surgery went ok this week.  I am recovering a bit slower than I would have liked, but I'm getting there.  I have a follow-up appointment on Monday to learn if I will need another surgery based on the findings from this one.  Since it was abdominal surgery, I can't pick up the kids for at least another week.  Thankfully, they have been very understanding.  I am hoping for a nice quiet weekend with us all home together, and maybe by next week, we all will be feeling better!

Keegan put puppy in our bed Monday night after my surgery.
He told Gray that puppy had a hurt tummy and needed to rest.
I can't tell you how excited we were to see this level of understanding from Keegan!
This was such a HUGE step for him!

Lastly, I obviously did not get to the printer's to order our K's for Keegan tshirts this week, as I had hoped.  There's still time to let me know if you're interested.  The more I order, the lower the cost will be.  I plan on going Tuesday or Wednesday of next week.  Please comment below or email us at if you haven't done so yet.

Thank you, as always, for every prayer and well wish.  We are so grateful to have weathered this week at home.  We're hopeful for a calmer summer ahead!  

Sunday, June 23, 2013


My brain is fried.  Absolutely, positively fried.  Here's why, and I think you'll understand.  I'm going to do my best to make this make sense.  Please forgive me if it doesn't.


  • We spent all day preparing for discharge.  By the time all his medications were delivered and all our ducks were in a row, it was 5pm.  Rush hour traffic on a Friday?  Must be discharge time for Keegan.
  • We intended to switch all of Keegan's IV medications and TPN to daytime hours, so he would be supervised for all of them, minimizing the opportunities for him to chew on the line again.  However, since TPN runs over 10 hours, we would have been stuck at the hospital on Friday until 7pm at the earliest waiting for it to finish.  (Hospital pumps/bags are not compatible with the home pumps.)  We didn't want that, so we decided to take our chances with running his Friday TPN overnight when we got home.  With checking on him multiple times overnight and him sleeping somewhat better, we thought it would all work out.  It didn't.
  • After checking on Keegan several times overnight, it seemed like we were going to make it through the last night of TPN without incident.  We have a video monitor in Keegan's room to keep an eye on him at all times.  He always, always starts to talk the minute he wakes up.  It's usually jibberish but almost always a cue that he is awake.  At 8:30am, we went to check on him just to find him awake...and wet.  He had chewed through his line.  AGAIN.
  • We clamped the line and called the team.  Bring him to the Legacy ER to be reaccessed and draw blood cultures.  Did that and came home.  We prayed and prayed that all would be well.
  • My parents decided to keep Audrey and let her swim with Aunt Alex, rather than bring her home and take her back if the line-chewing incident blew up.  We missed her so much but knew that was best.
  • We waited patiently all day and hoped that no surprises would come overnight.  We were wrong.
  • 1:30am.  Phone rings.  Blood culture has grown back positive for bacteria.  We are told to bring him downtown to be admitted for IV antibiotics immediately.  Grr.  
  • We pull Keegan out of bed and drive downtown.  Get to the floor, get him checked in.  Go to draw the ethanol out of his line to repeat blood cultures.  Nothing.  So, we have to reaccess him AGAIN for the second time within two days of back-to-back surgeries on the port site.  Then we have to draw a peripheral culture too, but at least by then, he had IV ativan on board
  • So far, we have no specificity on the blood culture, but everyone is hopeful that it will come back as a contaminate.
Ultimately, the team was very helpful in discharging Keegan home to wait this out.  That was a huge blessing, since standard protocol is to stay inpatient until you have negative cultures for 48 hours.  The reason they helped push this was because I am actually having surgery myself tomorrow.  You know, just to keep things interesting.  It is day surgery, and I should be home by tomorrow night.  Grr.

Keegan is not symptomatic of another infection at this point.  We have the remainder of the IV antibiotics here at the house to add just one more infusion to our home regime.  It's getting a little crazy. Please join us in prayer that the second cultures will stay negative.  I honestly have no idea what we will have to do if it also grows back.  One day at a time for now.

I apologize for the terrible organization and grammar of this post.  I'm doing the best I can.  We are just so thankful for every single prayer you can send up on our family's behalf.  We certainly could not be more grateful.  Thank you, friends.

Thursday, June 20, 2013


Today marked Keegan's 55th round of general anesthesia.  That's an average of 11 surgeries/procedures per year of life.  Only slightly ridiculous at this point.

It was a very long day, but the port has been fixed.  It is working fine for now.  Unless Keegan throws a curveball overnight, we should be headed home tomorrow afternoon.  We have a lot to coordinate to get there.  All of Keegan's usual 3 IV medications will be shifted to the day, and we are adding 2 new ones into the mix.  His meds through his g-button also increased from 3 times per day to 5 times per day.

I will update more about all that tomorrow or over the weekend.  For now, it's time to sleep while Keegan is sleeping!  Thank you so very much for covering our Bug in prayer today, and we would love for you to keep them up as we transition to home.

Wednesday, June 19, 2013

Try again

I am honestly having a hard time writing this post.  After today, I have no idea how Keegan has not been hit by lightening with the rarity of things that happen to him.  I'm buying him a powerball ticket tomorrow.  There has to be a positive side to all of this.  Keegan's port placement did not go as planned today.  He is ok, but tomorrow, he will have to go back to the OR to try to correct what happened.

The first sign that things weren't going as planned was Keegan staying in the OR almost an hour after he should have been.  When we were called into conference with the surgeon afterward (not Keegan's preferred general surgeon, by the way), he had a piece of paper and pen and started with "I'm going to draw you a picture."  No, no.  No pictures.  There is no reason for pictures in a port placement.  Parents of heart babies and critical kids know - pictures are never good.  The line is either in, or it isn't.  What is there to explain with a drawing?  Ultimately, the initial time they snaked the catheter in, it was a bit too long.  It was sitting within his atria and could have caused arrhythmias.  So they pulled it up and trimmed it off.  Then it was too short.  At the time, the surgeon said it was working but wanted to warn us that it wasn't in a typical position.

Keegan did wonderfully in recovery, and his eye exam was negative for yeast.  When we got to the floor, the line seemed positional.  It wouldn't draw back blood for his labs when he was laying down but was ok when he sat up.  Odd.  We continued to use it until mid-afternoon when some other labs needed to be drawn.  Nothing.  Nada.  No blood return at all.  We ran down to fluoroscopy, where they shot some contrast into the line.  Sure enough, it had migrated into the vein wall because it was too short and flopping around the SVC arch.

In the morning we are going to pull the needle out and reaccess, just to be sure.  We are 99.99% sure though that he will be going back to the OR tomorrow to have it replaced.  In fact, we have already signed the authorization to have him placed on the surgical schedule for tomorrow.  We don't have a time yet, but we just want it over with in order to go home by Friday.

I mean, seriously, folks.  I couldn't make this crap up if I tried.

I don't need to say that two days of back-to-back anesthesia is not ideal.  We are hopeful they will only have to replace the catheter and not have to find a new point of access.  Again, we ask for your petitions on behalf of our Bug.  We place his health and life in the Lord's hands, and we trust and pray that He will bring Keegan through this trial.  Thank you for joining us in that prayer.  More tomorrow as we know it.

Tuesday, June 18, 2013

Port placement tomorrow

Not-so-great parts of Tuesday:
  • Keegan is still not acting like he feels his best.  This could be part "hospital hysteria", but I've seen him stuck here when he really is ok.  This is not it.  Not quite sure why yet.
  • The antifungal medications have some of his labs a little wonky.  We are tweaking and watching for now.
  • He was stuck first thing this morning for labs and the very last blood culture before his new line placement.  Then when we started his IV mag, he started itching at his peripheral IV, and it turned pretty red.  We had to pull it.  Then we had no access to give him IV ativan before trying for a new line.  The oral ativan we gave through his g-button was of no assistance at all in calming him down, and it took three tries to get a line.  It only has to last until tomorrow morning, so fingers and toes crossed, please!

Better parts of Tuesday:
  • Only one more day until he gets his new port.  He is on the schedule as the first on-call, so only a trauma will bump him.  As long as he does well, we should be rolling out of here on Thursday.
  • Music therapy!  One of Keegan's absolute favorite things to do inpatient...until they have to leave and take the instruments away.  Ahh, the sting of transitions.

  • The blown IV meant Keegan had no lines...and no reason not to take a real bath for the first time in over a year.  He was a little fish again, floating on his back, blowing bubbles.  He did NOT want to come out.  It's safe to say, we will be swimming every single Sunday (aka dressing/needle change day for his port) this summer!!

So all in all, the day pretty much evened out.  We would appreciate your prayers for surgery tomorrow. Surely this is just another drop in the bucket, but it is another round of anesthesia and a slightly more difficult recovery than a broviac placement.  It's never easy to watch him go back to that OR.  Thank you for every prayer.  More after he's out tomorrow.

Monday, June 17, 2013

Father's Day & Monday update

Once again, I'm a day behind in updating about this inpatient stay.  That is usually a good thing when Keegan's in the hospital because it means there isn't anything too pressing to make a record of medically.

Yesterday, Keegan continued to bear the brunt of the steroid bolus and the remainder of tis infection.  He was an emotional train wreck and still very tired.  As of today, he is back to his regular steroid dose.  He still had quite a few meltdown moments today but overall, much better than yesterday.  His peripheral cultures post-line removal continue to be negative, so we are still on track for surgery to place a new port on Wednesday with a potential discharge date of Thursday.  Today, he had an abdominal ultrasound to check for any abscess caused by the yeast translocating to his gut.  We already did an echo to check for colonization there, and during his surgery, they will check his eyes.  Those are the three most likely places where the yeast could have spread from his line.  We assume they will all be ok, but we have to check to be sure.  We also had to replace his IV today, which took three tries and was no fun for anyone involved.  The new line is working much better.  Let's all just pray it stays that way until Wednesday.

Father's Day was also yesterday, and I missed the chance to give a shout out to all the daddies in our lives - Gray, my dad (BD), Pops, Poppy, Grandfather, and Papaw.  You are so grateful to have each of you in our lives, and I'm not sure how we would survive this crazy life without you.

Happy Father's Day, Daddy!
We love you to the moon and back.
Keegan and Audrey

Saturday, June 15, 2013

Hospital Update and Pre-Father's Day Fun

Good evening all… This is actually Gray taking over the blog… Just for tonight… I don’t want to disappoint the Miracle of the Heart fans out there so I will try and keep it brief and very visual (I’m more of a picture guys too).

Last night proved to be a long night for Maddie with pretty much no sleep.  Keegan was getting IV nutrition through his peripheral IV (PIV).  Kind of like the TPN at home but since it isn’t going through a central line, it’s a little weaker.  They call it PN… Anyway, the protocol for the PN through an IV is to check the site once an hour to make sure the IV is staying in place.  The alternative of the IV coming out of the vein would be filling the area under the skin with PN… and we really don’t want to go there with that kind of problem.  So the once an hour stirring of a kid that has been sleeping like a feather didn’t help… and it is really hard to sneak in and out of the room and not wake Maddie (only one or two recorded cases I’ve heard her admit to… and don’t ask about me… I sleep hard).

Just a few Pics from yesterday before I go much further... 
Waiting in Pre-Op... So thrilled you can tell.  At least we had the iPad.  That always helps.

After surgery and up in the room yesterday... You can see the PIV in his right hand... oh, and he's right handed...

Always love the Hospital Clowns... Keegan & Puppy like to clown around too...

Maddie was kind enough to double up shift for overnight stay with Keegan so I could join my parents and Audrey in Frisco to run the 20th Dad Fest 5K.  We had to get Audrey up a little earlier than she was use to but I think she had a good time.  Pops and I ran and Oma was there to play photographer.  The event was held at Pizza Hut Park in Central Frisco (Home of the MLS Soccer Team FC Dallas).  The race was fun (and just like it sounds) very family oriented.  I would definitely go again.  Eveyone was just out to have a good time… and we did.  Dad and I started with me pushing the jogging stroller with Audrey for the first half.  We switched at the half way point and once the bottle neck cleared… we were off to the races.  I have to admit, my Dad has some wheels.  Happy Father’s Day Dad… Had a great time and so did Audrey.

Starting the race... And they're off.

Just about to finish.  Man... Dad has another gear I didn't know he had.  Good job.  You were trucking it there at the end.

Good time had by all!  Happy Dad Fest 2013!

I got Audrey back to Mamie and BD’s in time for lunch and some afternoon pool time… Always a hit.  I think we need to change her name from Lady Bug to Water Bug…

She's really starting to love the water and every time she gets a chance to swim, she just gets better...

Her hair is long enough to go into a bun... So the first Audrey bun means that now she'll really look like her Mama...

After to cleaning up and heading back to the hospital to relieve Maddie… the shift was mine.  Keegan and I had a pretty good afternoon.  After lunch we actually went for a very long walk around the hospital.  I was very glad for that.  I think the purpose was served because when we got back… we was extremely tired.  We actually played a game that Keegan loved.  I called it mystery elevator.  I let him pick a quiet bank of elevators and continue to pick the floor he wanted to see.  He loved it.  We would pop out and see the lobby, and then try another.  Endless fun.

The mustang statue / art on C8 at Children's... I caught Keegan trying to imitate it.  Wish I had gotten a better angle because right after he did it perfectly with the head and neck... too funny.

As much as I need to try to make sure he takes it easy to he can heal and rest… I also need to really wear him out, so he can sleep, and heal.  Poor Keegan is just overly emotional (x100) and very tired (x1000). As Maddie had mentioned before, they had to hit him with a large stress dose of steroids for the surgery and he got another today.  I am sure that is not helping his anxious and frazzled state.  Poor Kid just doesn't know what he really wants most of the time. Beyond that, we really didn't have much today for him.  We drew another culture this morning.  Tomorrow will be the last.  We will then wait and if all of still negative by Wednesday then we should be good to go for the line placement.  So far yesterday’s is still negative, as is today’s…

Maddie was able to get away this afternoon to clean up and organize for tomorrow… I’m very proud of her.  She’ll be competing in her first Triathlon (well, not her first… but her 1st in a very long time) tomorrow morning.  She’s been working very hard to round out her training on the bike and the swim.  She’s very solid on the running… and she’s getting more confident on the bike.  She’s trained the most on getting ready for the swim.  I think she’ll be fine but competing in water is just different and it will take ser some getting use to.  Anyway, the race is a 500M swim, 11mi bike, and a 5K run.  Should be a quick one… and I couldn’t be prouder of her trying.  This is really one of her passions.

Keegan says... Good luck Mom! (as he wears her race swimming cap!)

Alright… well I think I have gone on long enough on tonight’s update… Talk with you all again soon… *(If I can cameo on the blog again after this… )*

Gray Harrison

Friday, June 14, 2013

Line infection

I'm sorry I didn't get a post up yesterday, but things have been moving a little quickly over here.  By the time Keegan was settled last night, I had such a headache.  The thought of turning on the computer to post an update made me nauseous.  Partly because of the headache, partly because of the events of the day.

The second culture we drew in the transplant clinic on Wednesday also grew back positive for yeast yesterday mid-afternoon.  As I mentioned yesterday, this is particularly dangerous for immunocompromised patients.  There is no opportunity to delay in that situation, and any indwelling catheter has to be pulled immediately.  So this morning, Keegan had surgery once again to remove his central line.  

The surgery itself went ok.  They put two peripheral IVs in, one in each hand.  By the time we were called back to the PACU to see him, he was in hysterics and yelling for them to be taken out.  One was lost in the fury, but the other one is still in.  He is not happy about that to say the least, and it's going to be a constant struggle for him over the next five days.  Because of his immune disorder, the surgeon gave him two stress doses of steroids during surgery.  We are praying that his extreme moodiness today has been a combination of steroids and anesthesia, rather than fungemia from yeast being released into his bloodstream when the line was pulled.  He will have to receive one more pulse dose tomorrow to protect him from flaring, and then we can return to his previous level of steroids on Sunday.  Needless to say, this infection means we will not be able to wean any more of his steroids this month.

We learned today that the type of yeast in his line, candida parapsilosis, is yet another infection that affects mainly immune suppressed patients, especially those with central lines or other indwelling catheters.  It lives on our skin and is extremely resistant to hand washing and other cleansing methods.  In fact, the infectious disease team said it's really quite amazing that Keegan has never had a fungal infection from this before, considering he has every risk factor for it.  Knowing that even with our absolute best precautions, he still would be susceptible to these infections doesn't exactly make it easier to swallow when we have to subject him to another line placement.  The fact that he has started putting his line in his mouth at night certainly increases his risk, especially when he breaks the line completely open.  

Fungal infections are so resistant that the treatment protocol differs from a bacterial infection.  With bacteria, we can pull the line, wait 48 hours, and if cultures are negative, place a new line.  With fungus, you have to wait five full days and have three negative cultures on consecutive 24-hour periods.  So the earliest we can go back to the OR for a new line is Wednesday of next week.  That means five days of finicky peripheral IVs and not getting his full TPN.  Then we will hopefully go home by Thursday and continue the remaining week of IV antifungals at home.  Because we can't trust him to receive anything overnight through his line without being supervised, that also means all of his infusions will have to be switched to the daytime hours.  So he will have to go back to carrying his pumps around all day long, instead of playing freely during the day.  I wish that a few days of that would convince him that he shouldn't play with his line, but I don't think he is developmentally capable of making that connection.  Nor for the life of me do I have any idea why he is suddenly so orally fascinated with his line.  That is something we haven't seen since he was an infant.

There are two things we are extremely grateful for in all of this.  First of all, the cultures that were drawn on Tuesday were done on a whim based on the rare need to draw mid-week labs for his rheumatology appointment.  If we had not had that appointment scheduled and waited for his Friday labs, we probably wouldn't have drawn a culture, and if the rheumatologist hadn't thought to draw them "just to be safe" after his weekend minor fever, we wouldn't have caught it at this stage at all.  If we hadn't caught it now, we probably wouldn't have caught it until he was completely septic with a systemic fungal infection and extremely sick.  Fungus is tricky that way in that there are no clinical precursors for it usually until it's very widespread.  While it's frustrating to be stuck inpatient when he's "not that sick", we dodged a massive bullet here, for which we are extremely grateful.  God was certainly watching over Keegan this week.  The second positive thing about the line removal and new placement is that we are pushing hard for a port, instead of broviac.  With a port, we can remove the needle once per week and allow him to swim!  We are at a point where his steroid load is low enough to allow him to have better wound healing capabilities and heal after a port placement.  It's been over a year since his last port, and it would make this summer so much more enjoyable for all of us.

I'm sure I forgot something in the whirlwind of the last two days.  I have a few cell phone pictures from today, but Blogger is being a little ornery and not letting me load them for whatever reason.  Keegan actually slept some the first two nights we were inpatient, but the sleeplessness has evidently returned.  Looks like I'm in for a long night tonight.  Thank you so much for your continued prayers and love for Keegan and our family.  I know I say it with every post, but we truly mean it from the bottom of our hearts.  This journey never gets easier, but it is more bearable knowing how many people truly care for our Bug.  Thank you.  

Wednesday, June 12, 2013


I guess I spoke too soon.  Will I ever learn?

When I went into Keegan's room to get him up yesterday , I found that he had chewed through his TPN line.  Yes, chewed through it.  Didn't break it all the way, but it looked like a puppy had gotten to it.  Enough damage was done to open the line and allow it to leak.  Did I mention that Keegan isn't sleeping hardly at all right now?  Maybe a few hours a night.  It's taking a toll on all of us, needless to say.  At some point during the night, he must have decided to take it out on his line.  Unfortunately, that line was running TPN straight into his bloodstream and possibly could have carried any bacteria from his mouth with it.  

We were already planning on repeating his labs yesterday and running some blood cultures from his central line too, even though the fever had passed.  We needed to recheck a few numbers before his regularly scheduled rheumatology appointment today.  We told the team about the line chewing incident and silently prayed it wouldn't amount to anything.  His labs looked a little better than last Friday, and we went about our day, knowing the blood culture was "cooking" but hopefully would be negative.  

This morning, we got up bright and early.  I took both kids with me to Scottish Rite for Keegan's rheumatology appointment.  It went well, and we were just wrapping up when I noticed Keegan hanging up on someone who kept calling on my cell phone.  It was the GI nurse calling to say the blood culture had grown back positive for yeast.  I grabbed the rheumatologist and put her on the line.  She convinced transplant and GI to repeat the labs and cultures and send us home, since he looked ok and had decent vital signs.  

So we headed over to the transplant clinic at Children's to have the labs and cultures drawn.  The attending physicians all came in.  We discussed the course of events since the weekend and agreed that we would bypass the ER and come straight to admitting if developed a fever overnight.  By that time, it was 1:30pm, and the kids were desperate for lunch.  I fed them in the cafe downstairs.  After potty breaks and a few minutes watching the trains while I updated Gray by phone (who had left early that morning to go out of town for work), Audrey declared she needed to go back to the potty.  We got that taken care of and were walking out of the bathroom to head out to the parking garage when the phone rang again.  The Infectious Disease attending had decided Keegan needed to be admitted for prophylactic antifungals through the line while the new cultures were pending.

And here we are.  Admitted on the cardiac floor.  He still hasn't spiked another fever, and there is the kicker in all this.  Yeast is dangerous, dangerous stuff in a central line.  Yeast is very dangerous to all transplant patients but especially for those with an IV tunneled directly into their hearts.  It's also usually very fast-acting and result in a very sick kid, very quickly.  So far, we haven't seen that with him.  Although his heart rate has crept up slowly over the course of the evening, so maybe we accidentally caught it early.  Only time will tell.

For now, we appreciate every prayer and bit of love you can through Keegan's way.  I promise to update as we know more, but we are praying it was just a contaminate that will let us come home within 48 hours.  Thank you so much for joining us in that prayer.

Monday, June 10, 2013

What to say about Keegan?

I've been sitting here trying to start this post for the last 5 minutes, but I am really struggling how to explain or make sense of what's going on with Keegan.  It's likely because no one really seems to know exactly what is going on with Keegan.

Most recently, we spent all weekend waiting on him to spike a full-blown fever.  Fevers are tricky for Keegan.  They could indicate a normal virus (which could result in a MAS flare), a flare just in response to his immune system attacking itself, or a central line infection.  Because he has a central IV line, protocol is usually to admit him for 48 hours of IV antibiotics and culture the line when his temperature goes above 100.5 degrees.  On Friday, he got to 100.4, but by the time we contacted the team and had a plan, he had come back down into the 99s without intervention.  We had already drawn labs that morning, so the doctors agreed to let us keep him home until the fever came back up, as we all assumed it was just the beginning.  Keegan was tired, had horrible coloring, and was not acting like himself, but other than that (and some tummy issues I will address in a minute), he showed no other signs of needing to be inpatient.

So, we waited.  And waited.  And waited.  We took his temperature every 30 minutes.  Every night, we prepared for needing to run him to the ER in the middle of the night.  He "simmered" in the upper 98s and 99s all weekend, but he never hit that magic number.  By last night, he still looked terrible, but he otherwise seemed to feel pretty well.  What was it?  Not a line infection, thankfully.  It wouldn't have gone away on it's own if it was a line infection.  It could have been a virus that the anakinra helped keep from becoming a full flare, although I find that unlikely since no one else in the family was sick.  Or it could be a small flare up of his underlying immune disorder that may happen more often as we continue to wean his steroids.  This may just be the beginning of something bigger, or maybe it will be a one-time weekend full of anxiety that never reveals anything more.  As agonizing as it was, let's hope that will be the case.

He didn't want to eat much this weekend, but a lemonade sounded good yesterday.
Safety during your lemonade run is of utmost importance.
Hard hats required.

In the last few weeks, Keegan has been sliding back into some of his old disease patterns, which has been obviously difficult for us to process.  We have been unable to raise his magnesium levels at all, but we are continuing with the IV mag infusions anyway.  Last week, we were allowed to start administering them at home.  Now in addition to his two IV medications per day, he gets TPN three nights per week and mag infusions twice per week.  Maybe in time, Keegan will actually benefit from all of this work.

When we came back from Boston with our new MAS/as-yet-unnamed-autoimmune-disorder diagnosis and on the IV drug anakinra, the rheumatologist Keegan sees here at Scottish Rite (who actually developed the drug) warned us that there is always something that your main drug won't fix.  For some kids, it may be a rash or joint pain.  For Keegan, she suspected it would be the attack on his GI system. We know that on higher levels of steroids, we can quiet the attack on his intestines and allow him to function somewhat normally.  On the biggest doses, he could eat and process food fairly normally.  Around the beginning of the year, we reached a point in the wean where although he was eating, his intestines couldn't properly obtain nutrients from his food, and we had to start back on IV nutrition (TPN).  The more steroids we have weaned, the more TPN and electrolyte management he has needed.

However, we hadn't seen a huge change in his output.  Until now.  It may be TMI, but if you've been reading about Keegan for any amount of time, you should be used to it.  About three weeks ago, we took another milligram of steroids off his daily dose, and over the last three weeks, his diarrhea has returned.  As the rheumatologist predicted, we believe this is just his underlying disease without steroid management (or as we slowly wean him off completely).  We were warned this would happen, but it is still a blow to see it come back.  The anakinra keeps him from massive flares that could kill him, and that is most important.  He needs to get off the steroids in order to grow and stop the atrophy we have seen in his brain over the last few years.  Those things are more important than a bad tummy that can be managed with diapers and TPN.  It's not life-threatening.  It's just disheartening.

I kept putting off this update because I kept hoping that the answers from his labs and from the doctors would be different.  I apologize if little of the preceding information made sense to most people.  I wish there was a concise answer, but there's just not.  Keegan will always keep challenging us, and this disease process will always keep evolving and keep us guessing.  This certainly isn't the end of the story.  I have a gut feeling things may start to reveal themselves a bit more clearly in the next few weeks.  We will just have to keep praying for patience as we wait.  Thank you so much for continuing to support us through it.  There is just no way we could continue to travel this road without your prayers and love.  More soon.

Thursday, June 6, 2013

Audrey is 3

Our precious Ladybug turned 3 today.

It may be cliche, but I can't believe that Audrey is now three years old.  She is such a different child than she was a year ago.  That is partly because being a part of this family has forced her to grow up faster than she should, but it is mostly due to her own passion and determination.  Audrey, you are a bundle of joy, energy, and compassion.  You want to help everyone all the time, especially your brother.  From helping us give his medications to speaking up for Keegan when other kids don't understand him, you are without a doubt the sister I always prayed you would be for him.  I know your experiences will help you become a woman with grace and humility, but I pray that you become so much more than that.  You are brilliant and sharp.  You are talented and curious.  You are loving and witty.  If you are all that at age three, I can't wait to see where you will go from here!  Happy birthday, sweet girl.  We love you so much more than you know.

Monday, June 3, 2013

K's for Keegan Shirts

I definitely have a lot of posts coming this week.  (I hope....let's not commit to too much, shall we?)  Audrey's third birthday party was yesterday.  An explosion of pink in my house, but she had a blast!  Her real birthday is coming up this week, and she recently made the jump to her big girl bed.  Then there's Keegan.  Sigh.  Not sure what to make of that yet.  So lots to update about, obviously.

For today though, let's talk K's for Keegan!! We found a local printing company to help us with some t-shirts.  Many have asked us about ordering a shirt.  Here's your chance.  

The cotton version will be on a white shirt with the logo Keegan's godfather, Teague, designed on the front.  

On the back, it will say "Keegan is alive today thanks to an organ donor.  Be a hero.  Donate life."  It will also have the website for the national organ donation non-profit organization that helps coordinate the official state registries,, and Keegan's blog address.

If there is enough interest, we can also print more technical shirts like the one Gray and I wear at races that are made of a wicking material.  

Here's what I need from you:

  • Comment below with how many shirts and what sizes you would be interested in ordering.  We don't have a price yet, but the more people that express interest at first, the more shirts we can order, the lower the price will be.
  • OR email me at with your desired number and sizes.
I will be meeting with the printer by next week and will have an idea of the final cost.  Then we can either take true orders.  I need your help though to know how many I should order.  If you have any questions at all, comment or email, and I will get back ASAP.  Thank you so much!