Saturday, December 29, 2012

Home & ready for Santa

Keegan was discharged home from the hospital yesterday afternoon, and Audrey came home today.  We have been very busy trying to work out Keegan's IV med schedule, get unpacked, and get ready to celebrate Christmas at home.  

Tomorrow may be December 30th, a normal Sunday, for you, but at the Harrison house, tomorrow is Christmas!  As Kris Kringle said in Miracle on 34th Street, "Christmas isn't just a day; it's a state of mind!"

We started getting ready for Santa to come by finally making our "Reindeer Food".  Well, Audrey did. Keegan, as expected, did not want to be bothered with it.  To his credit though, he is still not feeling well and spent most of the day resting on the couch.

There's a little poem you can read if you do a quick search online.
Audrey and I read it together as our "recipe" before starting.


To make Reindeer Food, you mix oats and glitter together.


The idea is that you sprinkle it on the lawn on Christmas Eve 
(or whenever your family is expecting Santa to come).


The reindeer will be guided to your house by the glitter shining 
bright by Rudolph's nose and have a little snack of oats while
Santa is inside putting out the gifts.


Spreading our Reindeer Food out before bed

 Looks like we're ready for Christmas (again)!

Thursday, December 27, 2012

Line #6 is in

Keegan is the owner of a shiny, new central IV line.  This is his sixth one in five years (excluding PICCs and other more temporary central access during ICU stays).  Three have now been lost to infections, one was removed for non-use (thinking he was doing well and didn't need it, just to need one again a few months later), and the infamous port that was in his subclavian artery.  You know that little one that had the potential to turn him into a vegetable....yeah, let's not talk about that one.

The surgery went well overall.  They put another broviac line in, instead of a port.  If I am confusing you with talks about lines, you can find a good summary of different central venous catheters by Stanford School of Medicine by clicking HERE.  He didn't end up going to the OR until about noon, and we were back in his room by 3pm.  We woke him up around 3:45pm because we were afraid he wouldn't go to sleep tonight if he slept much longer.  He was in an ok mood but didn't want to leave his bed.  He ate a little bit of dinner and fell fast asleep tonight.  Now that he has central access again, he can get his TPN tonight.  Hopefully that will "top off his tank" and help him feel even better tomorrow.

We are expecting that Keegan will be discharged tomorrow to continue the course of IV antibiotics there.  The hospital is swarming with flu and an epidemic of other viruses, so we need to get out of here fast.  We are also consulting with the infectious disease doctors and an oncologist who specializes in line infections in severely immune-compromised patients to see what additional steps we can take to prevent these opportunistic infections.  We will probably try something called ethanol locks, where we push a small solution of ethanol alcohol into the line, let it sit there for a few hours, and then draw it out.  It's kind of like a disinfectant for the inside of the catheter.  Other than that, we have been assured we are doing everything else right.  This pseudomonas probably translocated from his bowel into his bloodstream and his line, a rare and unpreventable complication of immune suppression.  On a side note, one of the nurses today told Gray that she saw the picture of the culture that had grown out pseudomonas and that it was the most raging, nasty one she had ever seen.  If we hadn't been on high fever alert from the strep and pulled that line immediately....gosh, I don't even want to think about it.  As bad as Friday night was, it doesn't surprise me though.

Time to wrap this up.  I'm watching the Baylor bowl game on Gray's iPad while Keegan is sleeping, and halftime's almost over!  Sic'em Bears!!

Here's a few good photos for you.  Keegan was in the BEST mood waiting in the pre-op area this morning.  I mean, seriously, I haven't seen him like this in a long, long time.  He wanted to take a picture with my phone, and here's what we ended up with.  Enjoy!







Audrey funnies

We're sitting here waiting on Keegan to be taken to the OR for his new line.  Guess it won't be a 9am line placement after all.  Ahh, hospital time.  Gotta love it.

Gray and I have been laughing about some of the funny things Audrey has been saying lately, and I wanted to write them down before we forget.  She has the silliest little personality!

  • On Christmas Eve, we used a video conference feature on the computer to say hi to my family and watch them open gifts after dinner.  Audrey had just opened a toy shopping cart with play food that my mom's friend sent to her.  She held up a bottle of ketchup ("dippin' sauce", as BD has named it) to the screen.  She asked Keegan, "you hungry, Bubby?"  He nodded yes, so she held the bottle up to his face on the screen.  "Here ya go!  Better?"
  • Whenever she asks you a question and you give her an answer, she says, "yes, that's right."
  • While video chatting last night, Keegan blew a kiss to Audrey, my parents, and sister.  Audrey turned around and said, "whoa, that was a big one, Bubby!"
  • Audrey was fascinated by the cast, walking boot, and crutches I used while recovering from a torn Achilles tendon.  She thought I had broken my foot (I didn't correct her, since explaining the true injury was over head) and would tell me that I needed to use both crutches if I happened to just be using one.  She also would ask to touch the boot or cast, and then tell me, "there, that's better!"
  • She is big time into taking care of her baby dolls right now.  Baby Stella is one she favors most frequently.  Child Life gave her a set of twin baby dolls, a boy and a girl, on Christmas morning. Those are the ones you see her pushing around the hospital cardiac floor in the pictures below.  She feeds them, straps them in the stroller, puts them to bed, etc.  Often you'll hear her stop strolling, turn to the babies, and ask if they're ok.  One of my favorite interactions with Baby Stella: "ohh, what's wrong, Baby Stella?  You need paci?  Oh, here you go.  You're ok.  Here we go!"  
  • Sometimes Audrey has to discipline her babies though.  Recently, she put Baby Stella in time out.  She sternly looked at her, raised a finger, and said, "you in Time OUT, Baby Stella!"  Gray asked her why, and she said, "she broke her foot."  Alrighty then.
  • Whenever she is going to leave the room you are in to go do something, she'll say what she's going to do, followed by, "ok? be right back!"  Earlier during a video chat, she said she had a present for Keegan.  "But it's upstairs.  I go get it.  Ok?  Be right back." 
  • Other common phrases:  "oh, that's cool!", "it's so tiny", "it's just my size", "this one's perfect", "I do it my own self", and "I knew that."
I'm sure there are many others that I have forgotten.  I'll try to come back and add a few as I remember them.  

So you can see a little of her silliness, here's a little video Aunt Alex sent us yesterday. (Remember, if you're reading from email, you'll need to go to the actual website to view, and I don't believe you can watch on an iPhone or iPad due to lack of a Flash player.)

video

Wednesday, December 26, 2012

White and quiet Christmas

After one of the warmest falls and winters in recent years, a cold front swept through the metroplex yesterday, giving us another rare white Christmas in Dallas.  I wish we could have seen it first-hand.  I took Keegan downstairs to watch through the window, but we didn't have a coat on hand to go outside.

Snow at our house this morning before Gray left for the hospital


Luckily, Santa made it to the hospital yesterday morning before the cold front!
The Child Life department at the hospital makes sure every child and sibling inpatient on Christmas Day receives a good amount of toys.  
Opening the stocking Child Life brought when he woke up
That el cheapo train was his favorite toy of the day.
The night shift nurses sift through the donated stockings to put one in each room before the kids wake up.  Ms. Amy picked one that was right on the money for K!

Waiting, waiting for Santa

Ho, ho, ho!

As usual, Keegan was oh-so-thrilled.

"Open it, BD!"

Strolling the baby dolls she received past Keegan's picture on the wall (left).

Walking Mamie and Dr. G, Keegan's transplant surgeon, to the elevator

We spent as much time as we could together on Christmas morning before my parents and sister took Audrey back home for a nap.  They brought us some yummy leftovers from my mom's Christmas Eve dinner to eat for lunch.  Keegan was exhausted after such a busy morning and napped until late afternoon.

After Audrey's nap, Gray picked her up to go to his parents' house for their Christmas dinner.  Keegan and I enjoyed watching the snow come in during the evening at the hospital and were at least able to watch White Christmas on the computer, thanks to Netflix.  Gray and Audrey safely made it through the weather to his parents' house for another round of food, fun, and presents.  Audrey was lucky one, by far - she got both Christmas celebrations with our families all to herself!

Presents at Oma and Pops' house

That's a lot of gifts for one little girl in one day!

Keegan had a good day today, arguably his best attitude and energy since he was admitted.  He was able to play in the playroom for about 20 minutes and managed to make it through the day without a nap.  He is scheduled to go to the OR tomorrow morning for a new central line at 9am.  His peripheral IV blew again this afternoon.  We spent two hours waiting for the IV team to show.  She tried and couldn't get anything.  Then we had to wait for the PICC team to show up.  Two more sticks, and they finally got a line.  Please say a prayer with us that it lasts until tomorrow.  All his IV meds got backed up today while we waited for access, so it will be a busy night here giving them all.  

We will update again tomorrow after the surgery, but we anticipate being able to go home on Friday and administer the remaining 10 days of antibiotics on our own.  Thank you once again for all your prayers.  They were our biggest Christmas blessing.  All in all, our day went very well, and we hope that yours did too.  Merry Christmas, y'all.

Monday, December 24, 2012

Christmas Eve

It was a fairly quiet Christmas Eve here in the hospital.  I suppose when it comes to Keegan, quiet is a good thing.  We learned that the pseudomonas was susceptible to the IV antibiotic we had been using.  However, Keegan's white count and ANC have dropped to very concerning levels, and it's possible that particular antibiotic could have been contributing to it.  Keegan's ANC is already always low, but today it dropped below our usual threshold to restart GCSF injections to raise it back up.  We haven't done that since last year.  We are going to wait until tomorrow to see if changing antibiotics alone will fix the problem before we have to resort to the injections.

Keegan obviously is in need of his TPN that he should be receiving tonight, as his electrolyte levels continue to drop.  TPN can only be given through a central (or somewhat central) line, so he won't be able to get it again until after his new line is put in.  That has been pushed back to Thursday now because the culture from the 22nd grew back positive too.  Keegan needs three days of negative cultures in a row to be cleared for a new line placement.  In the meantime, we are replacing what we need with IV supplementation through his peripheral line, which became another problem when we lost both of the lines the OR put in last night.  It took 2 teams, 3 sticks, and until 11:30pm to get one in his hand.  It's a good one, and he doesn't seem to mind it.  Hopefully it will make it until Thursday.  We are lucky that his anakinra can be given through the peripheral line.  At least one thing works in our favor.

Other than that, he was an emotional MESS today and extremely tired.  The only time we saw smiles out of him today was after his IV anxiety medication was given to prepare for a lab draw.  He slept most of the middle of the day away and was ready to go to sleep tonight early.

These pictures are from yesterday, but the sentiment shown remains true.



Thanks for the pizza set, Helene! He likes it; I promise! ;)
We didn't have real pizza, so we tried to make some out of playdough instead.

Other than that, it was just a quiet day trying to keep Keegan happy.  There's not alot of commotion in the hospital on Christmas Eve, other than discharging as many patients as possible.  We watched Christmas movies and took him on some wagon rides to check out the Christmas trees and decorations. Then, we were able to FaceTime with my family tonight after dinner and watch Audrey open some presents.  Definitely the highlight of our day!

Audrey with the gingerbread house she helped me make last week.
She was pretty proud of her work
...and of how many "sprickles" (sprinkles) she put on it.

On the rocking horse Poppy made for Alex and me when we were her age

Sure miss this beautiful face when we are apart

Tomorrow will be the first Christmas morning we have spent inpatient.  We have been discharged on Christmas Eve in the past and admitted late in the evening on Christmas Day, just not been here Christmas morning.  My parents will bring Audrey up to spend the morning with us tomorrow so that we get some quality family time together.  Gray and I are upset that we will not be able to enjoy Christmas at home tomorrow, but we are thankful that Keegan and Audrey don't fully understand the complexity of the Christmas tradition.  The meaning of Christmas does not change whether it is celebrated on December 25 or any other day.  We will have our own Christmas when we are home together, and it will be extra special.  After all, we'll be the only ones Santa comes back for, right? ;)

From our family to yours, 
we wish you a very MERRY CHRISTMAS!!

"The Word became flesh and made His dwelling among us.  
We have seen His glory, the glory of the one and only Son, 
who came from the Father, full of grace and truth."
John 1:14


Sunday, December 23, 2012

Pseudomonas

That's what it is.  We don't know yet what the drug susceptibility is of this strain.  We are hopeful the IV antibiotic we have been using will be the right one in the end, as the fever seems to have broken.  We should know for sure by tomorrow.

Pseudomonas is a nasty bacteria that unfortunately only affects those with compromised immune systems.  It can be difficult to treat and recurring.  Based on how sick he was, the bacteria is most likely in his bloodstream, as well as colonized on the line.  We simply didn't catch a sample of infected blood in the small sample they took to test.  The doctors are fairly sure though that getting the line out so quickly was the best possible thing we could have done for him.  Once we get a new central line in, we should be able to finish the IV antibiotic course at home.

Keegan slept ok last night, sweating through two sets of sheets.  His heart rate went down overnight, so between that and the sweats, we thought we were over the fever cycle.  However, his heart rate has been high again all day.  He feels warm to the touch but hasn't had a fever.  Overall, he has just been tired and ornery.  I guess you can't blame him for that.  As I'm typing this, we realized that the IV in his foot was blown, and the one in his arm had broken and started bleeding.  We are calling the IV team can find a new point of access, or else this is going to be a very long next three days.

 Labs didn't look great today.  We had to replace some electrolytes, even though Keegan just had TPN.  His blood counts have all taken a big hit, and his liver numbers were rising.  His ferritin level has continued to go up, but we are trying to avoid having to do another steroid pulse due to the infection.  Steroids are good anti-inflammatories, but they are like fuel to the fire when it comes to bacteria.  Tomorrow's levels will probably make that decision for us.  Either it will be over our threshold for treatment (already dangerously close), or his ferritin level will start to stabilize on its own.  Unfortunately, we've been through this so many times, I am not hopeful we can avoid a flare without treatment.  We shall see.

Tomorrow is Christmas Eve.  We are hoping to have a quiet day with our families visiting.  If there's one good thing that I hope will happen, I can stop wearing the cast on my foot tomorrow and may even test it out for a short run.  Lord knows that would be one of the best Christmas presents for me...and for my sanity!

Thank you again for all your prayers and support.  You truly help us get through each and every day, especially at the holidays.


Saturday, December 22, 2012

Long night, long day, line's out

It was a terribly long night for our Bug.  Temps over 105 multiple times overnight.  IV tylenol (our old friend from last year) would not touch it, so we had to bring in a cooling blanket.  He was shaking and throwing up from fever most of the night.  We knew the line was growing gram negative rods, a bad sign, and that he was headed for sepsis unless the line came out immediately.

About to leave for surgery; cooling blanket machine in foreground

Luckily, they were able to take him first case.  The line removal and anesthesia went well with some additional stress-dose steroids on board.  He has two big peripheral IVs, one in his right arm and one in his left leg.  The leg IV is really stressing him out, and it means he can't stand or walk until it comes out.  

He was still febrile going into the OR, but his temperatures have been normal since he came out.  We are not out of the woods yet.  His heart rate is still up.  Anesthesia can temporarily mask/reduce a fever, so we will be watching him like a hawk overnight.  His ferritin is going up.  However, we are unsure if it is an early sign of a flare or just a response to the infection.

Resting post-surgery in his room


As of tonight, we know that the line is growing one of two bacteria, more than likely pseudomonas.  A bacteria that is the bane of every severely immunosuppressed person and that is extremely hard to treat.  I will explain more about it tomorrow when we know more.

I know I end every single post the same way, but I honestly have no other way to express it: we are beyond thankful for your prayers for our Buggy.  He could use every one right now.  I am extremely grateful that the kids are blissfully unaware of the date of Christmas, but we are still struggling with an extreme sense of disappointment and frustration at the entire situation.  For that reason, we would greatly appreciate prayers for our whole family.

I rarely do this, but here are some specific prayer requests:

  • For Keegan to remain fever-free and find comfort and rest overnight
  • That the infection does not spread to his blood stream or heart
  • That this bacteria (which can be very drug resistant) will respond to treatment
  • That his peripheral IVs will last us until the new line can be inserted later this week (BIG request)
  • For cooperation and communication between the doctors caring for Keegan and Gray and me
  • For our endurance and strength through this holiday season
  • For every other family enduring these trials with their precious children now and throughout the year

Friday, December 21, 2012

Crap

Pardon my language, but this is just crap.  

And a whole lot of other words that I can't write on this blog.

Keegan was admitted to the hospital last night after spiking a high fever.  Initial labs didn't look too scary, but we started the blood cultures+48hrs of IV antibiotics just to be safe.  His fever came down this morning, just not his heart rate, so we knew we were in for something bigger.  However, this was nowhere near on our radar after a positive strep test 24 hours before...

Keegan has another line infection.  

I feel like I've been kicked in the gut...and then punched repeatedly.  The doctors continue to tell us that no matter how clean we are, Keegan's immune suppression is so great that he will end up with these infections.  It sure feels like my fault though, as I handle the line most often.  Still, I feel as though we are more strict than when he is inpatient, yet these always happen on our watch.

The team is not playing around this time.  The immune-compromised infectious disease doctors want the line out tomorrow, and evidently, rheumatology, immunology, and transplant all agree with them.  Then we have to have 72 hours of clean cultures before going back to the OR for another line.  Did you do that math?  That means the earliest he could go to the OR is Wednesday, with our earliest discharge being Thursday.  After Christmas.  

We can't argue with them though.  Tonight, Keegan's temperature went from 98.9 to 105.5 in less than an hour and a half.  We switched him back to IV tylenol, but he is still in the 103s.  If it doesn't break soon, we will bring in a cooling blanket.

That's all I can offer tonight.  The odds of a virus plus a bacterial infection plus a flare all occurring at the same time and on Christmas are unheard of, evidently just not to Keegan.  Either I'm going to be hit by lightning or win the lottery with this kind of luck.  

Keegan should go to surgery tomorrow morning, but we don't have a time yet.  We will update when we know more.  We are heartbroken, frustrated, and in shock right now.  Luckily, the kids don't know what day of the week Christmas is, so we will work around that when we're home.  I just want my son to catch a break for once in his little life.  Thank you for lifting us all up in prayer at this time.

Thursday, December 20, 2012

Delayed reaction?

Gray spiked a fever this morning, went to the doctor, and also tested positive for strep.  Now he's on antibiotics too.

Audrey's temperature broke during her afternoon nap, and she should be past the contagious period now after 48 hours on antibiotics.

I'm still hanging tight.  A little post-nasal drip but nothing concerning yet.  *Knocking on wood!!*

Keegan.  Ohhh, Keegan.  We had a deceptively quiet day with Keegan.  He was in a deceivingly good mood.  Terrible coloring.  Low grade temps (99s) to normal temps all day.

Well, at least we had the day.  His temperature started climbing at dinner.  We paged the team again and put him to bed.  The plan for now is to stay home unless he spikes a higher temperature overnight.  Then to the ER we go.  If not, we tack blood cultures and MAS labs to tomorrow's regular labs, but instead of going home, we stay in the clinic until we get thumbs up/down about his labs.

So, here we go again.  Thank you for your prayers for Keegan's safety and healing once more.  We'll keep you updated.

Wednesday, December 19, 2012

Strep

What did I say about jinxing it?  Will I ever learn?

Keegan and Audrey have strep throat.  Audrey actually spiked her temp first, although Keegan had been "simmering" all day.  We took her to the after-hours pediatrician last night to be tested for flu because in case you aren't yet aware, flu season is gearing up crazy fast.  This could be the worst flu epidemic since H1N1.  She didn't have the flu but tested positive for strep.  We started Audrey on antibiotics last night.

Keegan's temperature spiked around 7am.  Per the transplant team's instructions, we took him to the pediatrician to be tested for viral cultures, and he tested the same.  We started him on oral antibiotics this morning and came home.  No labs.  No blood cultures.  No communication from the team or pediatrician with the rheumatologist or immunologist.

If you have been following Keegan for any length of time, you may remember two things:
1.  Kids with central IV access are supposed to have blood cultures drawn immediately with any fever, few to very rare exceptions, and
2.  Keegan's MAS can be aggravated most quickly by viruses.  He can go from 0-to-60 faster than a Ferrari when it comes to full-blown flares.

Instead of following usual protocol or our previously agreed-upon procedures for dealing with Keegan's fevers, I ended up calling the rheumatology doctors myself to alert them of the situation.  They were not amused.  Nor are we.  Again.  Same story, different chapter.

However, we agreed to see if he still has a fever tomorrow morning after 24 hours on oral antibiotics.  If so, we will come in for full labs.  If not, we will draw MAS labs with his regularly scheduled labs on Friday.  We are hopeful that Keegan will not flare and that we can weather this at home.  While we had no desire to drag Keegan to the Children's ER during a flu pandemic (although I'm sure the pediatrician's office was a pure, infection-free bubble), the faster we address a brewing flare, the better the outcome usually is for him.  And the best outcome we can envision at this time is to treat him at home with antibiotics, increased steroids, and increased anakinra.

Moral of the story: we are home for now.  We are praying for a calm, rest-filled, healing night of sleep for our entire house so that we can take down the flag of black plague from above our house before Christmas.  Or at least stay within the confines of our house, and not the hospital, for Christmas.  We would be extremely grateful if you would join us in that prayer.  Thank you so very, very much.

Sunday, December 16, 2012

Breakfast with Santa

It's that time of year again.  Time for breakfast with Santa!  Audrey loves it, and as is his want, Keegan isn't the biggest fan.  I really feel like his understanding of Christmas is increasing this year, but we still didn't hold out much hope that this would go well.  He doesn't freak out.  He just doesn't understand and doesn't want to be bothered with it.  Tradition and social custom mean nothing to him.  Nor does he appreciate changes to his routine, especially in the morning.  After our incident at the Christmas card shoot, I truly wasn't looking forward to yesterday's breakfast, which saddened me since it has been a tradition in my family since I was a child.

Overall though, Keegan did well, and Audrey was as excited as ever.  Audrey came through and told Santa her wish for a Minnie Mouse scooter and helmet.  She has stuck with this wish since October, but I wouldn't be surprised if she changed it on Christmas Eve.  Keegan once again said he wanted "nothing" and "no" for Christmas, but afterward, he told Mamie he wanted "a car".  Our picture went a little better than last year too.  Thanks again, Mamie!  We're looking forward to many more to come.

Mamie, Keegan, and Audrey
BD was out of town on business.  Missed you, Big Daddy!
Sorry about the straw in your face, Mamie.  ;)

With his Snowman balloon

Getting her snowglobe balloon from Peppermint, the elf


T-R-O-U-B-L-E

Tell us how you really feel, Keeg.

Audrey was saying, "Santa, Santa, Ho, Ho, Ho!"

I believe about now Audrey is thinking, "come on, Bubby!  It's Santa!"

We told Santa about Keegan's issues.
He didn't even skip a beat.




Well, I think that about sums it up!




Saturday, December 15, 2012

Disney on Ice

For some reason, I thought I posted this already.  Oopsies, as Audrey would say!

At Thanksgiving, Aunt Alex gave some pretty cool presents to the kids.  She won tickets to a Stars game and a Zamboni ride for Keegan through a silent auction benefitting the nonprofit cancer support network where she works.  Unfortunately, the NHL is still on strike.  Keegan has to patiently wait for the strike to end to redeem his gift, but luckily, he doesn't understand that yet.

Audrey's gift was better for immediate gratification...tickets to see Disney on Ice!  Audrey had a BLAST.  For a week afterward, she spoke constantly of all the characters that were "spinning on ice".  Aunt Alex bought plenty of souvenirs for her, but the Tinkerbell cup (that is hand-wash only) is the overall winner.  She has to drink from it at dinner every single night.

Popcorn and a frosting-filled cookie.
Aunts love doing that to their nieces before sending them home!

It's Minnie!
She begged for Mickey, Minnie, Goofy, and Donald to come back every time they left the ice.
Another highlight was when Snow White came out, since she had on her Snow White dress.
Tinkerbell was probably her second favorite though because she flew around above the ice.

Definitely her favorites
I had never been to Disney on Ice before and was pleasantly surprised.

With her light-up lantern wand from the movie Tangled

Aunt Alex and Audrey with the prized Tinkerbell mug
Thanks for such a fun, girls' night together, Aunt Alex!  It was a treat!