up all night

Yesterday I ventured out with all the kids to Berne to see Eric's cousin Amy and her family who were in town.

Owen did surprisingly well.  It was very refreshing actually.  After supper he had quite a bit of pain and so commenced a screaming fit, but other than that he was a champ.

One funny thing.... When people ask "How are you doing, Owen?"  Owen always answers, "Not good.  I'm sick."  oh, so pitifully.  I is kind of funny.  Mostly because people expect to hear or think they hear him say "good" and it throws them for a loop when he is so pitiful about it.   At least he's honest.

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Owen had a bad night last night.  

For the last three nights he's woken up at 11:45 almost on the nose, then again around 3:30, 4:30 and 5:15.  It is getting pretty annoying.  and I feel terrible for him.  

He's waking up in pain from a bladder spasm.  yelling and crying.  rolling around.  There's nothing I can really do for him.  It sucks.

I don't think I mentioned here that I initially did not even give him the Detrol when we came home... just used the vallium.  It seemed to work just fine.  And I was grateful to know all the behavior was ALL Owen and not a medication.  

After the vallium ran out he seemed to only have 3 or 4 spasms during the day and few at night.  They didn't seem to bother him too much, so we decided to hold off on the Detrol and try and get his attitude and behavior to improve first. 

That only worked for a few days.  By Thursday of last week we were giving him the Detrol.  The bladder spasms had gotten progressively worse and more frequent.  I'm glad he's on it, but I'm not sure it's doing much good.  Not sure what to do about that.

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I said to Eric before going to bed, "What are the chances he wakes up at 11:45 again?"

Sure enough.

As soon as you quiet him down and get back in bed he's screaming again because it hurts.  Maybe he'd playing us, but I don't think he is.

We usually end up moving him to the couch just so he doesn't disturb the other boys.

Then around the 3rd time we're up, we just put him in our bed.  I feel like I have a newborn.  It is exhausting.

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But last night he was hot.  Running a fever.  Just could not sleep.  I took his temperature around 2am.  102.5 (under the arm) which means it is more like 103.5. 

I gave him tylenol and hoped that would break the fever.  Honestly too tired to even call the Resident on call.

By 6:00 it was down to 101.  

Gave him some more. (by 10:00 it was 99.)

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This is where I get mad.

8:00am I page Kaeffer (cuz he's always telling me I should for "any" reason).  He's in the OR and an OR assistant calls me back and relays the messages back and forth.

He said he should be on an antibiotic for 6 months post op.  Um what?!  first I've heard this!

The Keflex antibiotic they discharged us with was for 2 weeks and ran out Friday.... the SAME DAY we were at his post op appointment.  (Hmm... maybe someone should have prescribed something.)

I question this. and she tells me Kaeffer says to take him to our pediatrician if he's not feeling well.

um, no.

Totally confused, not wanting to distract Kaeffer from surgery and getting no where with this OR girl, I decided to call the Uro nurse after the office opens.

Not that I don't have any confidence in our pediatrician or anything, but what am I going to accomplish by taking Owen in?  He's gonna want to defer to the specialist on this one... everything is so multi-faceted right now.  Not exactly easy to sort out.

Since his fever was down I was okay with waiting a while.

Talking with the nurse I realized they all thought he was previously on a prophylactic antibiotic (one you take every day as a preventative long term treatment).  

Owen has not been on a prphylactic since he was 3 when his bladder reflux subsided.   would have been nice for somebody to look at the  med list on his chart and realize that at some point!

How was I supposed to know he needed one?  grrr.

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Where we stand now... 

basically we are suspecting a UTI because he's been without antibiotic for 5 days and has foreign bodies in his bladder!!!! (which makes me so mad, because clearly I would have gladly given him one had I known he needed it!)

 

Since his urine is not foul smelling at this point and all the tubes are flushing fine, we are comfortable with seeing if the antibiotic takes care of it.

He's laying low today.  Didn't do the bowel program or even get dressed.  He has not been hungry all day and very tired. very sweaty.  Said his head hurt. (which of course starts the SMP* drum beat in the back of my mind.  oh why can't anything be simple!)

*Shunt Malfunction Paranoia

I am guessing I'll end up at the pediatrician tomorrow to get a urine culture just in case.

We're new to this whole UTI thing.  never ever had one.  pretty unbelievable really for being cathed his whole life.

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Well, that's what's new at our house!

Been appreciating the meals our friends are providing more than words can express.  such a blessing after a long sleepless night like last night.

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shall end with a thankful list.

thankful for:

time with my family.

school.

learning about India.

yummy food.

cuddles with Evie.

Evie's fountain-top hair.

Kate's crazy loose front tooth.

Zane's funny sayings.

Liam's teachable spirit.

The sound of Eric mowing the lawn.

A finished fence!

reading books with my kids.

peaceful sleep for Owen today.

friends.

patience.

cool weather.

dishwasher.

folded towels.