Thursday, April 24, 2014

Firefly Run awesomeness!

So almost a month ago (eek!), we had an AMAZING turn-out for K's for Keegan at the Firefly Run.  I mean, seriously y'all, look at this!


We had family, friends from every part of our lives, Gray's coworkers, the kids' pediatrician's office, and Keegan's home healthcare company.  We were so honored by the number of people that came out to support Keegan and Children's this year, and honestly, I cannot WAIT to see how much bigger it can be next year.  Truly, I ran the entire thing on cloud nine.  

My friend, Kelly, from high school has been one of K's for Keegan's most loyal supporters.
She rocks. ;)


This kid had so much fun, that he wanted no part of going home that night.  Thank you so much to everyone who came out.  I'm diligently looking for another race we can have a large presence at, but you can count on us being out in force for next year's Firefly!

Wednesday, April 23, 2014

Bullet dodged

I still need to update about the Firefly Run, end of both kids' spring soccer seasons, and Easter.  Hopefully, I can tackle each one per night this week to get caught up.  If you happen to follow Keegan via Twitter or FB, you may have noticed that we dodged another line infection bullet last week.  You know, just to keep us on our toes.

On Monday night right before starting to cook dinner, I was putting some things away in the garage and taking out trash.  The kids were watching a movie in the den, and I left the back door open to keep an ear out for them during the few minutes they were out of my sight.  It was less than 10 minutes of sweeping, tidying, and garbage duties and yet evidently still too long to leave Keegan alone with his TPN pump running.  I came in to see him standing in a small pool of blood saying he needed "a wipe".  I saw the blood in his line first, clamped the line, disconnected the pump, and carried him to the bathroom to get cleaned up.  Then, I started finding the wreckage.  Blood saturating my couch (which although is luckily red, still did not come out), on the rug, on the tile, on the leather chair, on his clothes...and around his mouth.  Once again, he had chewed through the line, and as soon as his venous pressure exceeded the pump rate, he started to bleed out.  With blood, it always, always looks worse than it is, and although I've been through this too many times, I still got a little freaked out.

My mom rushed over to take care of Audrey and help the clean up while I sped across the street to the Legacy ER.  Obviously, one concern was how much blood had been lost.  Answer?  Not enough to be concerning.  The biggest concern was whether any bacteria from his mouth had been pumped IN to him before he started to bleed.  So we ran labs, drew blood cultures from the line, and waited on pins and needles for 5 days to see if they would grow anything.  If at any point, day or night all the way until 7pm on the night before Easter, the cultures grew any bugs, it would mean an immediate hospital admission for IV antibiotics and possibly surgery for a new line.  Luckily, that didn't happen, and so far, so good.  He has shown no signs of an adverse reaction to the incident, and we enjoyed a normal Easter together as a family for the first time since 2010.

The big question is what drove him to chew again.  If you recall, he did this in the middle of the night last summer, which is why his pump now runs during the day.  That resulted in a fungal infection that dropped him like a rock and took two weeks and three trips to the OR to get a new line.  We assumed last summer that it was because he woke in the middle of the night and was bored.  Perhaps it was boredom again this time.  We will never know.  Even when his nurse is here, we can't keep eyes on him 24 hours a day.  There will always be a few minutes here and there he could sneak it in his mouth, and he isn't capable of understanding why that's a bad thing.  For now, we are grateful that God was keeping a watchful eye on Keegan, even if I wasn't.  Thank you for continuing to lift him up in prayer, and if you don't mind, a few extra wouldn't hurt until we are truly out of the woods here.  Whew! One more day with Keegan, one more bullet dodged.  Let's just hope we continue to be this lucky!

p.s. Keegan's cultures from the previous ER trip came back positive for a respiratory illness called metapneumovirus.  Evidently, Audrey was misdiagnosed!  It was still a virus, so supporting his symptoms was all we could do.  However, we will say that was also a bullet dodged, as this particular virus can be difficult on immune compromised kids.  Boy, Keegan's guardian angel is working over time lately!

Sunday, April 6, 2014

Rough day

I was hoping to have posted about our amazing night with Team K's for Keegan at the Firefly Run last week.  Instead, I'm posting about our day-long visit to the Legacy ER.  It was a rough day, but it did have a happy ending with all four Harrisons in their own beds, not Hotel Children's.

Last Saturday (yes, the morning of the Firefly Run), Audrey woke up with a lovely little fever.  With a brother like Keegan, there is no luxury of giving ibuprofen and waiting to see what happens.  We took her to the after-hours pediatrician for a flu and strep swab and left with a diagnosis of Fifth's disease, a common childhood virus that causes fever, a slapped-cheek-looking rash, and mild respiratory symptoms.  It's supposed to be a virus you only get once, similar to chicken pox, but Keegan has had it at least twice in the past due to his wonky immune system.  The best part of it, as with most viruses that cause fevers, is that the contagious period is before the fever and rash appear.  Great.

True to form, Keegan started a low grade fever Wednesday night while Gray was out of town for work.  Standard protocol for a fever when you have a central IV line is to run cultures on the line and be admitted for 48 hours of antibiotics, in case it's a line infection.  The medical team allowed me to give Keegan tylenol and keep him home this time, as we knew he had been exposed to a virus.  By Thursday afternoon, his fever was gone, but he was pretty miserable with the respiratory symptoms.  Still, we thought that he was doing very well, considering viruses generally trigger MAS flares.  Yesterday, he had a a difficult day GI-wise, again not unusual for Keegan.  No red flags yet.

This morning, Keegan tanked on us so quickly, we hardly saw it coming.  No color, retching, moaning and saying he needed to go to the hospital.  We gave him anti-nausea meds to no avail.  After throwing up, he sort of spaced out and mumbled here and there about an ambulance and #8 (the eighth floor at Children's, the cardiac unit).  He didn't feel warm, but on a whim, we ran his vitals again.  And again.  And again.  Keegan is hypertensive and on three blood pressure medications daily.  His blood pressure dropped significantly to a dangerously low level, and the team told us to take him to the Legacy ER immediately.

Of course, he perked up when he got to the hospital, and blood pressure came up a bit.  Ran a chest x-ray, labs, urine and blood cultures.  All the while, Keegan is begging to just get in the ambulance to #8, even though he had regained some energy.  His labs were pretty off, so they decided to give him some IV fluids and see if he could tolerate some solid food.  The fluid bolus helped his labs come back together and bring his blood pressure back to his normal.  Cultures are still pending on his line for 48 hours, so we're not out of the woods yet.  But for now, we are home.

What happened today is anyone's best guess.  Maybe he had a strange reaction to the virus because he doesn't have a normal immune system.  Maybe his intestinal failure got the best of him without TPN to keep him balanced (no TPN on the weekends, just IV magnesium).  All that really matters is that we ended up safely back at home for now.  We will be watching him closely and seeing what happens over the next few days, but we are praying that he will start to rebound more every day.



Thank you so much for lifting him up once again in prayer.  Today was scary, but it also went better than 90+% of his other ER trips.  That's the power of prayer for ya!