bacteria_log #4

Big couple of weeks. Since we've been outpatient Rogan has been on a tight schedule of IV antibiotics through her central line. At 6 AM, 2 PM & 10 PM she receives the 1 med over a 7 minute push. At the 2 PM she gets the 7 minute push and a second med over 30 minutes. No side effects... just challenging for all involved.

Clockwise from top left: 1st day back w/ Cokes on the couch, nap time IV antibiotics, same, wanting to feed baby Renton, nap time w/ Coco in the car, sleeping beauty.

Apres clinic visit pizza stop. Brian Craighill photo.

So last Wednesday we got the speciation and Thursday we met w/ her docs to discuss. As we thought, the bug is notoriously "sticky" and was probably hiding out on her line. On Tuesday she went in for surgery to have it removed. It was a long day, to say the least, but she dominated... as usual. She's feeling 100% and we are looking forward to Summer & swimming.

Checking her email w/ a cup of coffee in the waiting room. Post op. Before & after.

Thanks for reading and for all of your support.

bacteria_log #3

At 4 AM today they told Case that Saturday's blood culture showed as negative... also got closer to figuring out what what the bug is: "gram negative baccilli non-lactose fermenting". Yum. If this next culture reads negative she will hopefully be released tomorrow. She is still feeling great... literally bouncing off the walls in there.

... still don't know the exact speciation of the bacteria, but the antibiotics are working. They will continue the antibiotics for at least 14 more days to make sure it is 100% killed... & after that, will continue to take blood draws & culture them to see if the bacteria pops up again. So, the bug has either been wiped out, or there is a chance that it could be "clingy"... "hiding out" by adhering to her line... and not sloughing off when they draw the blood for the cultures. At that point we strongly consider removing the line and dealing with the peripherals pokes until October. Very much hoping for the former...

Here are some shots from my visit yesterday... able to go for a long wagon ride w/ Mom & even snuck out side... took her pants off and ran in the grass.

I am back to work today... Casey came home to see Coco and her Mom is with Rogan at the hospital. Rogan affectionately calls her "Nana Noo Noo"... and she is a certified baby whisperer... so, I'm sure Rogan is fine.

... feel very lucky & fortunate to have her on the mend and coming home soon. Grateful for the early detection and that the antibiotics and her own cells knocked it back so effectively.

The ICS unit at Primary's is a tough place to be, for any amount of time and there are plenty of kids who aren't as lucky or who have worse diagnosis'. Massive respect to all the docs & nurses... and love to all the other kids and their families.

bacteria_log #2

Friday's 10 AM blood culture showed as positive at 4 AM today... so the bug is still present, as of yesterday AM. Rogan will be hospitalized until Monday, at the latest. The bug is of the gram negative family. She continues to get the cocktail of antibiotics & plenty of fluids.

Aside from extreme boredom, wanting her Dada, wanting her Cokes & to come home... she feels good. Below are pics from last night.

My take is that the bug is clinging to her line... contaminating each draw. My guess is if there were any sizable volume of the bacteria in her bloodstream:

A. she'd be sick

B. she'd be sick from the antibiotics killing the bacteria.

Docs said that as a foreign object, bugs can have a tendency to stick to the line. If this is the case... the bug will obviously show in every blood draw. We hope to get a speciation today... and at that point they'll focus an antibiotic on that species. They may be able to fill the line w/ that focused antibiotic... or we may opt to have the line removed. There is no way to find out where the bug is for certain... so it would be a gamble. If we elect to do this Rogan will need to get poked for an IV 5 more times... for her forthcoming treatment. Tough as nails.

They are also running tests on a bladder infection... her potty patterns are perfectly normal... so this is doubtful.

Loving that she's not feeling sick... hating that the docs can't knock this out and she could come home. Loving my hero of a wife... hating cancer.

A negative blood culture... or a speciation... please. Go Rogan.

bacteria

Rogan is at Primary Children's w/ Case right now... battling a bacterial infection. She woke yesterday feeling fine... then spiked a fever at about 10 AM. She went to the ER immediately for her blood draw & a blanket antibiotic. She slept a bit and felt better... crushed a sizable ice cream cone and was released. She felt great when she arrived... but got sick again at approx 4 PM.... but after that felt great again. She slept well through the night and woke today thirsty and hungry for pancakes.

We got the call at 9 AM that something popped up her blood culture from yesterday.... alarming that it showed so quickly... meaning it was growing quick... or that there was already high volume of the bug. It is a dangerous one... so... back down to the hospital immediately.

... chances are that the bacteria entered her system through her central line... but we are ultra diligent about its cleanliness and maintenance... so, that is frustrating. Not sure how or why... but like her disease.. there's no sense in even thinking about that... only focusing on beating it and the positive outcome.

Docs say that the strain of bacteria she has is rare and dangerous... but her blood counts are high and she's been fighting it with the antibiotics, within an hour of it showing symptoms yesterday AM. They are confident they can beat it quick... with the focused antibiotic... and her counts being high. The antibiotic kills the bacteria and creates a surplus of toxins.. which will make her sick. They flush them out with meds that help facilitate that evacuation & a steady intake of fluids. That said, she'll be admitted for the next 24 hours. I'll pay the girls a visit this afternoon... to deliver a healthy dinner and keep Rogan stoked.

Thanks for the positive vibrations... they help more than you'll ever know. Stay tuned for the update.

A bird's eye of her very first set of pig tails:

HERE TODAY... GONE TO MAUI.

... got the official call from Mike, from Make-A-Wish, today! It wasn't a very productive conversation... since I became instantly choked up at the mere thought of Rogan being able to get wet and romp in the sand. I was able to give him my email address... and we are moving forward! Sorry Mike!... and thank you.

Please stand by for firm dates and come if you can... to share in the celebration of Rogan Tomey Crawford.

Since last post we celebrated Easter at Promontory. The girls were beautifully dressed in their new Spring gowns. They don't get their paws on too much candy... so it ended up being a pretty awkward & uneventful scenario. They both locked into a bizarre candy consumption coma and became completely anti-social... didn't even care to hug the Easter bunny!

Stories: as promised:

Rogan wants to capture the neighbor's cat... re-name it "Meow-meow", feed it milk & allow it to lick my face. HEEEEEeeeeeeeeeeeeeck no.

Fo real:

The real "dragon slayer":

Coco is sick of the snow... so Auntie Jesa picked out her very 1st swim suit:

Brian Craighill photo:

Thank you for reading.

GO ROGAN.