Monday, June 25, 2012

Home and happy.. and destructive.

So parenting in the hospital is... incredibly difficult.   This was the first time to have a very active toddler that couldn't leave a 15x15 room for something over 60 hours (they let him out the first 8 hours because they hadn't put two and two together).  How do you do timeout? if you take things away, EVERYONE suffers. You can leave him in his crib, but whenever you put him in there for normal reasons, he says sorry because he thinks he did something wrong.  Believe it or not, after that long he gets into everything. Everything.  We're all a little less sane leaving that building (that usually is the case though.)  Let's NOT do that again. 

So.. he comes home and of course, is into everything.. and has decided he doesn't want to listen to us.

He was quickly reminded that at home, we have time out. :)

Now to try to re-establish a routine where we don't get up at a quarter til 6.  Please. 

Home on the horizon.

Long morning, started at 5:45 w/ labs, but the labs mean we get to go home today, probably this morning.  The antibiotic level was good and the culture was plain old staph, nothing crazy. 
We have one tired toddler that really needs to leave our little room!  He's been a trooper though! 


Both open sites are vastly improved...  We really hope this does the trick!  Our pass out of here depends on the blood cultures (that should have been up yesterday morning.... not sure what's up there!?)  and the blood level they drew at 6am.  Maybe our clinic friends will call down and see what on earth is up w/ the culture.  So, no leave time sadly, which is what we'd hoped for by AM rounds. 
The vascular access team (specialists for drawing labs and placing i.v.'s) have been by almost daily... maybe they'd give me an i.v. with a coffee drip... or diet mt. dew.... Last nights med schedule wasn't exactly compatible w/ sleep.  Well, he slept pretty well considering they messed w/ him a handful of times.  Not to mention the construction at 5:15am.  Seriously...  i've never considered filing a complaint, but this is totally against their philosophy about doing what's best for their patients.

Sunday, June 24, 2012

The light at the end...

The light at the end of the tunnel doesn't appear to be an oncoming train. :) That's good news.

As far as we can tell the ticket out of here is a proper blood level of the antibiotic.  When they increased it they put the doses closer together, so it'll actually be 24 hours instead of 32 til the retest.. So, early morning and not early afternoon!  We might be out by noon!

The report hasn't come up from the cultures... other the preliminary report... At this point it appears maybe they're not growing much of anything beyond a little staph?  Hard to say?  Tomorrow is a weekday, and on weekdays, things happen.  Weekends have their good points... it's quieter (the little boy next door on Friday/Sat morning screamed nonstop anytime someone came into the room... whoa...), no waiting in the cafeteria... but i'll be glad for Monday!  We're hoping to see some of our clinic friends, but since we're leaving before we thought, we may not. Sad! 

Lady, leave me alone! 

Not in the cards...

Not in the cards to go home today.  Better luck tomorrow.

Saturday, June 23, 2012

Need more practice being a good Brethren..

I'm too new at this non violent Brethren thing...  I still want to punch someone in the nose.

Long, totally unproductive night.  Tired of our 15x15 room (at least it's that big, right?)  No blood cultures, no vanc level, blew what was a perfectly good i.v. trying to get labs (failure)...  Now he's asleep, no i.v. and still two labs to go tonight and meds.  We haven't gotten a potassium level yet... no one is concerned, but we'll all feel better when it's normal.

I hate this.  A lot.  And if you tell me it could be worse, you might get punched in the nose.  (By the way, don't tell anyone that, ever.) 

We'd been told all day they'd have to do two vanc levels, one before his dose and one after.  So, when they were trying to get blood off the i.v. the second time, we let them because otherwise they'd have to do two draws in the middle of the night.  There is no second draw.  They blew an i.v. and had to redo it at 10:30.  ARGH. 
The potassium level was totally normal. :)  The vanc (vancomycin=i.v. antibiotic) was lower according to the labs recommended levels.  Of course, the lab got drawn an hour late which has to change how high the level is in his blood.  if the vanc is too low, it won't do what it's supposed to... i.e. we're not leaving.  Here's hoping that it's alright considering the time difference.

Child life- all of our best friend!

We stopped by the child life area and the hooked us up with puzzles, toys, DVDs and books .  Phew... now we're sane for a few more hours.  Overnight they'll test the level of antibiotic in his blood and if it's right we should be out of here tomorrow.  Cross your fingers and say your prayers.  We've not seen any improvement, but it's not even been 24 hours. And they are taking the drain out, one less worry.  The site will be open, but it's better than a drain!  

Friday, June 22, 2012


Update: So glad for friends who can fill me in on such things... One mentioned if the lab was hemolyzed (sp?) basically clotted to some degree, and it was... more so on the first lab, less on the second.  That can cause an elevated potassium level, and so the worry level went way down.  They'll retest today and hopefully all will be normal.  They're going to get the drain out (hooray!).  We're on contact precautions though.. big bummer.  Hopefully the cultures say it's not any nasty super bug (resistant staph, MRSA, etc) and we'll get off. Not sure if regular staph would be a problem.

P.S. Who does construction on a  children's hospital at 6am?  Seriously... Wait at least til 7!

His labs aren't good... a handful of things are too low, one was so "critically high" they ran the test again, and now it's "high"...  And of course the good docs are are home.  Put in an email to our hematologist, hopefully i'll hear from her soon!

Patience is a virtue.

Things in the hospital can take forever.  This shouldn't be news to anyone, but boy... it's annoying.  At 11am, they decided to admit us.  By 12:30, we got to our floor.  By, oh, nearly 3 they got him into the system.  We saw the vascular access team at 4:30, and didn't get the orders for his meds til 5:30.  Didn't GET the meds til 8:30.  So, we ran around the floor all crazy most of the day because he had no reason to be in his room... Not my favorite way to spend the day! 

He's on i.v. vancomycin and rocephin (for my LM friends), two potent drugs.  i haven't had the nerve to as if the delay will cause us to be here another night.  We're on contact precautions i guess, which means the nurses are supposed to be wearing gowns and gloves... They told me that a few minutes ago.  So that probably means we can't leave the room, which is bad news for a 2 year old who feels otherwise fine.  His meds will run for 2 1/2 hours a day, otherwise he's unattached and in a room... oohh child life! Could be a very long day tomorrow and Sunday. 

He's fast asleep now and finally getting his meds.  Patience, Brittany... or, go to sleep. That's good too.  He doesn't have ANY night meds.. only vitals every 4 hours.. yippee!


We were admitted for what will probably be two days of i.v. antibiotics.  What a slow process, though.  They decided to admit at 10:45, and we didn't get up here til 12:15, and even now (2pm) they haven't got orders in, and so we haven't even been able to get an i.v. in... so we wait.  Hopefully the i.v. goes smoothly and we get going soon.

Wednesday, June 20, 2012

Cincy bound soon.

Going to Cincy to get this figured out (hopefully)... So glad for the help so we could rearrange our schedule (Galen, Brian and Shari)... we really need to get this done! 
We were instructed to plan to stay a few days, in case of i.v. antibiotics.

Monday, June 18, 2012


(This is probably one of those read-before-you-read-outloud-to-the-youngins post)


So, in my quest for trying to figure out why
14 days of amoxicillin
7 days of septra
10 days of keflex
and 4 days of augmentin
and a partridge in a pear tree haven't beat this infection and fevers (not to mention the surgery!)

(if only someone would tell me to STOP, i'm so tired of this!)

i called to get his pre-op labs (post abscess, pre surgery)... wondering if his white blood cell count was in the toilet... it is not!

Nurse: His WBC is actually not low, it's 15.7!

Me: HOLY CRAP! (oops!) Wait, what'd you say?

Nurse: 15.7  That's really high, especially for him.

Me: No kidding!

Whoowhee!  His pre May surgery WBC was 3.1.. terribly, pathetically low.  (Normal is 6-17).  Your white blood cell count should go up with infection and trauma.  So, even after that big surgery it was only 6-8.  So you can probably see why i'd be surprised.  So, that's not the problem.

His hemoglobin is low. it's 9.1 and it should be 11.5-13.5.  He's almost always on the low side, but that's low for him!  That explains why he's pale and tired... (well, the fever doesn't help that...)

So, a day in the life...  No more answers, but at least he's been fever free for 10 hours, which is the longest since Saturday. The Ped wants to see the fevers gone by tomorrow, so here's hoping. 

Sunday, June 17, 2012

Happy Fathers Day!

Happy Fathers Day to my great dad, wonderful husband and my grandpas! :) Love you all! 

We had a yummy (perfect!) summer dinner... Steak, corn on the cob, watermelon and strawberries.  Oh, and peanut butter ice cream pie! Micah even tried almost all of it.. not the steak :)

Now it's time for the collapse on the couch and the collective  "uuuuuhhhhhhh" of a way too full belly! 


We have infection and fever again.

Right now we're emailing back and forth with our surgeon, who is out of the country...  Not sure what's left to do, though. 

Friday, June 15, 2012

Part 2

So, forgot to mention Micah was to go up to the picu after surgery.  At this point, whatever, i didn't question because that's probably where the most competent people are!
We head into the waiting room, and realize that if i don't eat now, i won't (i don't leave Micah, ever)... And Travis needed to leave as soon as he heard that Micah was fine to go to work.  So ran off to grab something and eat really fast, and we get the call he's out (about 25 minutes, fast!) They ushered us to a conference room, and we sat.

And we waited.

And we waited.

About 20 minutes later, they called us back to see him.. .Not in the picu, in recovery... Alright, well i guess we'll see.  So i went to see Micah and Trav stayed to hear what the doctor had to say.  So he waited.  Thirty minutes after the first call we said forget it, and Trav came to recovery.  They had to page the doctor and he showed up, 40 minutes after the first call... That's way past acceptable.  The doctor was nice, said he'd done well, explained what he'd done, gave us a script for pain meds and told us barring any trouble, we were free to leave.

So, in Cincy they do one of these things after surgery: 1) Send the child to recovery (PACU), then home.  2) Send the child to PACU, then to a floor to stay or 3) Send the child straight to an intensive care floor.

Here's what happened today.  We went to recovery.  He trialed off oxygen, did great. He was awake, unhappy, but not in excessive pain.  That lasted probably 30  minutes.  Then we were informed we were being moved to another area... WHERE?  Literally across the hall, in a very similar set up.  Pretty much zero difference.  Of course Mr. Man wasn't happy to be moved... and it's not easy when they're attached by leads on their torso, a pulse ox on their toe and an i.v. in the arm.  We had to wait for an hour after he got to the second recovery (i'm pretty sure at least) and he had to tolerate something in his tummy.  Strange.   They too his i.v. out and didn't hold pressure long enough (or check to see if it stopped bleeding) and it started bleeding everywhere.  Down his arm, leg, my leg, the floor.

"Umm, he's bleeding." (the nurse doesn't respond or turn around...)

"Umm, he's bleeding a LOT!"  (nurse grabs gloves, puts them on and grabs some gauze.)


We finally got out of there.  Trav left as soon as we saw the doc and was sweet to bring some of our stuff to the car. Unfortunately neither of us thought about where my wallet and keys were... in the bag he took to the car and locked.  So Trav was an hour and 15 minutes away w/ the spare... Thank God my mom was home and could go get them from him and bring them.  These are the types of things i don't forgive myself for... it's stupidity... and because of me he had to sit around the hospital for an extra two hours.

Never been so happy to be home.   Bad day. And pretty much every single bit of it was unnecessary.  Next time we'll go to Cincy, no matter how small the procedure. Lesson learned.  And yes, i'm a huge hospital snob... But come on, most of these things are unacceptable, not me being picky.

Poor Trav got home from Camp at 6:30, and had a youth event from 7:30-11.  We're all going to sleep well tonight. 

When your surgeon says...

When you email your normal surgeon the events of the day, and he replies

"What a day!"...

Probably not a good sign.   Micah's chin swelled an insane amount in 24 hours.  By bedtime, it was about the size of a golf ball.  Seriously. And then.... it exploded.  Well, that's probably not the technical term, but it did.  AWFUL.  Disgusting, and i've seen pretty disgusting things with him.  i'll spare you the details, because i want to throw up even remembering them.   This was of course, when he was half asleep at bedtime.  Poor child was in SO much pain, but we tried to drain it as best as we could.  Eventually we quit because he was miserable.  The good news was he slept better and had a lower heart rate since he was more comfortable.  The question was whether to show up for surgery anyway... And because we have the most awesome Cincy surgeon, he replied to my email at 9pm and said that we might as well get it cleaned out well, since this infection has been so persistent.  We scheduled it for Friday AM at Lutheran... our first surgery NOT at Cincinnati Childrens.

The surgery went fine, and he's doing fine, but i was NOT impressed. At all.  Cincinnati has made me a SNOB when it comes to how things are done.  The surgery was scheduled at 10:30, which no one could even tell us til 9:30.  We showed up at 8:30, and went up to the surgery check in desk, behind another lady.  One of the staff asked if i was with her, "no" and she sent me to the window around the corner. Cool.  The lady at the desk asked if i was here to check in, and i said yes, and she snappily told me to sit down and they would call me... How do they have any clue who i am to call me?  i said the other lady sent me over here, and she told me again to have a seat.  Super. Love the snappy attitude, because, of course, there's nowhere i'd rather be today. So we sit.

They call me, at 9:00am, to register.  Really?  We register... and sit.  They call us to pre-op at 9:30.  For real?   We go to pre-op where they tell me, after requesting, when surgery is.  10:30, but the surgeon hasn't gotten to his 9:00am case yet, so he's obviously behind.  So we sit.  We get the normal run around of pre-op, but no one mentions ANYthing about the trach... Sort of an important detail.  No, "What type of trach does he have?" No, "Do you have spare trachs to send with him" No, "What do you suction with and how far?"  Not impressed.  So, i volunteer the info, and when asked if i need to send trachs with him (i do, of course), she says she doesn't now, and will ask the surgeon.  (which she never does, i do).  We meet w/ the anesthesiologist, and the doc and sign papers.  We've put his trachs, stuffed animal, etc on his crib so they'll go w/ him. They come to get him, and don't use the crib.  And don't pick up the trachs. So, Travis gives them the trachs (they don't even have this brand at this hospital, sort of important!)  and they leave w/ him.

 That's the first half. Gets better.... (worse)...

Thursday, June 14, 2012

O.R. Tomorrow...

So, the consensus is that the O.R. will be the best way to get rid of his infection.  We're doing it at Lutheran, (and it's not Dr. Smith, i don't care for him at all.)   it's the first surgery we've had there... Not sure if we're staying post-OP, so we'll see.  O.R. time is about 10am.. not sure, they never told me, only told me when to be there.

Tuesday, June 12, 2012


The last blog was nothing, LOL.. A degree and a half in a half hour... yesterday overnight he went up 3 degrees in a half hour! 

The plan is to stay w/ the plan of antibiotics, they should be helping very soon if not already.  We caught his fever low (or it wasn't going any higher, hard to say) this morning, phew.  if the fever hits 104 or won't go down w/ tylenol, off we will go, even though there's not much they can do in the hospital.  We should be over the worst of it!

Monday, June 11, 2012

A hunch...

So, M's LM has been more red the last few days...But it's always changing, so sometimes it's hard to tell what on earth is going on.  Called the Ped about the redness in the morning, he wanted to see us and got us in 3:30.  Yay! 
By noon he was running "warm".. 99.0, by 2pm he was fussy and totally uncooperative for therapy. Huge waste of time.  By 3:45 he was 99.8, and when the Ped thought he felt warmer than that at 4:15, he was 101.3.  WHOA!  Half hour, degree and a half! 
Tylenol gave the fever a kick in the pants. Phew.  it's creeping up again, though.. We'll see what tonight brings.  We were sent home w/ orders for 20 MORE days of antibiotics.  (this is course number 5 since May 10...)  i pushed for i.v. antibiotics, but he said they only really work faster, not necessarily better.  As long as the fever stays not ridiculously high (my words, not his, lol!)  we'll do these antibiotics.  And, if this doesn't solve the problem, we're not sure what to do next, that's a Cincy question.  Poor little boys belly! 

Man, it's frustrating to go around and around w/ this infection.  Hopefully he doesn't have two things brewing... we don't need that!  He's seemed better since the fever has been down.

Sunday, June 10, 2012

A Youth Pastor's life is no life for a two year old...

After 3 nights of not going to sleep til 9:30-10pm, and another chaotic very late night, someone's schedule is ALL screwed up.  Yet somehow, he's only slept in one of those 4 times... How does that add up?  (Probably adds up to one exhausted mother!) 
Travis is gone way more than normal for the next week, so normal is still a ways off...

Micah's infection still seems questionable... there's one spot that's very questionable, and in the world of LM, that's probably not unusual (to have one spot of cellulitis).  Somehow 4 rounds of antibiotics didn't get it... Trying to decide whether it's worth another trip to the doc.  (For what, more antibiotics?) 

We almost celebrated getting Micah's correct reflux medicine (the mixing agent is on national backorder!)... We found a supplier (i've resorted to using drug language, LOL)... And they filled the WRONG MED w/ the coveted mixing agent.   So, after nearly two years of the same med (and trying another one once when we had to due to a drug interaction that failed miserably) we have to try something new.  Because someone didn't listen to me say Prevacid about 63 times in 5 minutes.  Well, maybe 10 times in 5 minutes... if he starts throwing up...
 if you couldn't tell, someone's a little high strung.  Our medical supplies haven't showed up yet, so it appears they've lost our order for 3 of the last 5 months... we don't need these supplies or anything right?

When's vacation?  

Saturday, June 9, 2012

Trip Fun!

i feel like i'm missing something!

Yummy watermelon to crunch on

Friday, June 8, 2012

Friday, June 1, 2012

Baby girl update

Baby girl will be 6 months on Thursday! All seems to be well... another ultrasound in a month!  Yay!