Good News...She has a UTI.

Thur 4/20/17...Day 17

No really...I am glad she has a UTI.

Last night she dropped her body temp. 

She has dysautonomia (also called autonomic dysregulation).  It means her autonomic nervous system has a hard time controlling her autonomic functions.  Mostly she struggles with temperature control.

All day, every day her temperature is something we need to have in the back of our mind.

A lot of time instead of getting a fever she will get a low body temperature (which can actually be more dangerous than a fever).  Ellie's normal body temperature is 93-95.5 F.  She does OK maintaining her temperature in a temperate environment as long as she is healthy.

Last night she dropped to 91.  The lowest we have ever seen with her is 86 F (yes...the Dr.'s were freaking out...ha ha!  Funny looking back...not funny then).

So when her temperature has been really stable and then it drops, you think of it like a fever.  Meaning...you think she probably has an infection or a new bug or something is going on.

So she had the low body temp, her blood pressure was elevated, heartrate was elevated and a couple other small symptoms led us to send off blood and urine samples last night.

I suggested yesterday that we lower or eliminate her night-time breathing treatments.  I thought ...
#1) I don't want to get up every 4 hours at home
#2) I thought she would get better sleep
#3) When they come do the breathing treatments, it wakes her up and then she doesn't go back to sleep and then she fights the bipap.  So I postulated that perhaps her co2 would be better if she slept better, because it would be allowing the bipap to do it's job.

So last night she got no breathing treatments and she had her best CO2 for this whole hospital stay.

We are saying that we are OK with a CO2 of 50-55 for her (not the rest of us).  And that is where her "good" readings have been.  This morning her CO2 was 48!  Woo hoo!

Overnight she spiked a low grade fever of 97.5 (low grade for her).  Her blood pressure and heartrate were still high.

I was pretty convinced it was a UTI.

The Resident came in and said "Good News, her UA (Urinalysis) (Quick look at urine) was clean."  No UTI.

I said "that's bad news".

He said, "why is that bad news?"

I said, " because having an answer is ALWAYS better than not having an answer.  UTI's are easy to treat.  You don't get fevers and elevated HR and BP for no reason.  So now it is going to be some other bug that is worse."

He said "maybe you are right."

Of course I'm right, my young padawan.  You have many lessons yet to learn.  I am just joking.  I have actually really liked the resident and intern we have had this hospital stay.  Which is unusual for me...they usually just drive me crazy.

So then an hour or so later when the Dr. and resident rounded (came around to talk about each patient individually) they said her culture was positve for a UTI.  A culture is a longer look at a specimen where they try to grow any bugs/bacteria/virus' that may be in the sample.

She was growing ecoli, which they said is the most common UTI.

It is easily treatable with oral antibiotics.  Yea!  Good news.

I asked the Dr.'s, "So, home tomorrow?"

They said, " you choose if you want to go home today or tomorrow."

I said, "Let me think about it."

I know that sounds weird, if a Dr. says you can go home today...why wouldn't you want to?

These were the things I needed to discuss with Jason. 
#1) She had had an elevated blood pressure just this morning.  Although we now had an answer, I do not check BP at home.  So I would not know that it was resolved.
#2) We had eliminated the 2 overnight breathing treatments last night and today eliminated 1 of her day treatments.  Which means we are going from 6 treatments to 3 within 24 hours.  That is a huge jump.
#3)  I didn't want to rebound, once you are home...it is so hard (for everyone) to come back really soon.

Jason and I decided to wait one more night and come home tomorrow (Fri).

Now I am not superstitious in my everyday life, but in reference to Ellie and her medical needs I am HYPER-superstitious.  So I hate to even say she has a possibility of coming home tomorrow because I feel like it is jinxing it.  So really quick, find some wood to knock and throw some salt over your shoulder.

We will be coming home with nasal canula during the day (still at 1/4 liter, which is really low) and bipap at 16/8 at night with a rate of 12.

We are risking being back at PCH with pneumonia in 6 weeks by doing bipap at night.  But we will really only know once we try it.