Bailey March 21st 2016

So the week of March 18th, 2016 Bailey had told Mike late after work Thursday night that she had a bump on her back and it was causing her some discomfort and pain. But I didn't hear about it until Friday afternoon, so with her weight loss, sleeping all the time & now a lump on her back our minds began to race about WHAT could be doing this to her. It was too late to go see her doctor, which had by the way just retired &a was now serving a mission, but had a new Doctor, Dr. Jones. She would have her annual well check visit in a month or so but felt we needed to be seen sooner. But we decided to wait the weekend & try to go in on Monday, rather than go to an ER or Insta Care that doesn't have her history. That weekend we fasted, prayed & worried & that's where this quote I posted came from...

Previous to all of this, for months Bailey had been losing weight, sleeping more & more, drinking a TON of Apple Juice, water, etc. but all the symptoms we had rationalized as a teenager, who works a lot, late hours & gets up early for school, watching what she eats, etc. Everyone had made comments about how good she was looking, she had been watching what she ate more since November- December. She got sick around her period in January, this time it was so violently sick throwing up in the basement bathroom, she called me down to help her. We thought she had food poisoning, or it was just her period, etc. The weekend of the 18th she had lost so much weight that the NEW size 2/4 jeans she just bought were now starting to hang on her. I kept asking her if she was dieting, or if she was taking something her friends gave her to lose weight, etc. in which she kept replying No too. Madi Archibald had even started texting me asking what Bailey was doing, if I had recognized her weight loss, etc. I said Yes & that we had found a lump on her back so we were going to be going into the Doctors Monday.   

Sunday evening, March 20th we had gone over to G&G Paskett's for dinner, along with Nunley's, & the Allen's. Grandma had made some dinner, but some of us didn't eat, & some of us did. Bailey had eaten, but had gotten really sick that night while being over there. She wondered if maybe anyone else was feeling sick that had eaten the meat, but no one else who had eaten the meat was not feeling sick. So we ended up calling it an early night being over at grandma's & came home.

Then the next morning, Monday morning before work, she was always SO TIRED, SO HUNGRY, but she couldn't eat when it came down to it. Mike & I started talking & saying could it be this, could it be that...and then Mike said I bet its Diabetes, like Kolby Gillett. So I looked up a recent post Jamie had posted of the symptoms & sure enough Bailey had some of the symptoms, but not all- so I called Dr Glade's / Dr. Jones office & asked for an appt. & then was able to speak to Darlene, the nurse. After telling Darlene about Bailey's symptoms & what we saw, but always rationalizing it but feeling like she needs to be seen, because of the bump on her back, we got an appt for 3:30 that afternoon. We all went off to school and work & went about our day. When the appt came I took Bailey into see Dr Jones, who this was his first time seeing her, or any of our kids. We told him Bailey's symptoms, then said with a quick blood test by pricking her finger, we could tell if it was Diabetes. He also checked her lump on her back, but when her blood draw turned up to be 413, he knew we found the cause. He gave us a slip with the numbers & told us to go DIRECTLY TO UTAH VALLEY ER, DO NOT GO HOME, DO NOT STOP ANYWHERE, BUT GO DIRECTLY THERE!!!!

Bailey's Symptoms-

Extreme Thirst

Frequent Urination

Weight Loss

Change in Appetite

Feeling Tired, Drowsy & Lethargic

Hair loss!!!

It wasn't until that weekend that NOT ONLY was she sleeping A LOT but she was starting to be lethargic more as she was around the home.

SO we did just that! 

Bailey & I drove directly to Utah Valley Hospital in Provo, going to the ER, but they were doing Construction on the Hospital so it was very confusing on where to go for the ER. We entered where the sign said, but after finally finding a spot to park, we got out of the car & headed into the ER. However, we began walking, and walking & walking then realized we parked so far from the ER, but I wasn't about to turn around & leave Bailey to go repark the car or have her hike back with me to get the car, so we just headed for the ER. When we arrived, there was a waiting room full of adults & children. We checked in and almost immediately got sent back to check her numbers.

She was SO VERY BRAVE, & stayed POSITIVE!!!!

Then after them checking her numbers there at the UV ER, her numbers had increased from 413 to 423. Then they sent us back into the waiting room & waited for a bit before they had us go back & had her undress & get into a hospital gown. There we waited for a number of different Drs to come in & ask her their questions, check her vitals & numbers etc. we were in the ER area for a couple of hours before they ended up sending us to a private room on another floor of the hospital.

You know its SOOOO interesting HOW MANY people had been telling Bailey "how good she was looking" & "how much weight she had been losing" BUT with that being said- you look at this next picture & you can SEE that she isn't well & hadn't been doing well for a while.

and this is Bailey being a GOOD BALL!

                                    This is the ER hospital room that we were first placed in

We finally were put into our own private room

      Bailey had some PRETTY GREAT nurses for the 5 days while we were there

After a day or two they ended up wanting to put in a direct line or pick line to her heart, so they prepped her here & I was standing next to her bed to hold her hand. I THOUGHT I was going to be able to do that, BUT I started feeling dizzy & lightheaded so I said I'm actually going to have to sit down for this, I don't want to be a casualty....

Flowers from G&G Gillett & Scott and Michelle Gillett

We had visitors during her 5 day stay

Poor Girl had bruises all over her fingers by day two...

We only thought we were going to be there a day or two, but then each day after that her numbers were not averaging out & then her Potassium levels weren't equalizing, so day after day we thought were going home so we decided not to shower or change our clothes, but then by day 4, I had Mike bring me some clothes to change into. But after 5 days we were BOTH ready to be in our own beds, & shower at home.

After FASTING with Bailey with only ice chips since being checked into the hospital on Monday, she was FINALLY able to eat on Wednesday, we BOTH were!!! I just couldn't eat, knowing she couldn't eat!!! And I needed to fast for Bailey & her NEW NORMAL-

 Bailey had to learn how to eat & read what she eats before she eats.

Bailey had to learn HOW TO give herself shots now every morning, before she eats, to correct her numbers & how to test her numbers. 

This was minutes after we had a REALLY GOOD CRY!!! I had to document this moment. The nurses had come in & before she left the hospital she would have to give herself shots, so they came into the room & told her now was her turn. I went and knelt next to her by her bed. She would begin to start to give herself the shot, then stop, then start again, then stop again. She just started crying & then so did I. That was the scene for the next 20 minutes or so, she couldn't give herself the shot. The nurses were VERY PATIENT, but then finally after crying, bawling & laughing then crying again, she finally said I just realize that this is what I have to do now to stay alive. She did it! And then each time after that for the rest of the hospital stay she struggled, but she did it eventually.

SO PROUD of HER!!!  

After NOT eating for a few days & for months of her body STARVING herself, she LOVED her food in the hospital!!! She ate EVERY SINGLE ITEM & EVERY SINGLE CARB Count they gave/allowed her to eat...

Nights were pretty rough in the hospital- with checking her numbers every 20 minutes the first night, then to every hour on the hour for the next few nights and also giving her medicines/potassium.

and this was where my butt was planted for the 5 days hospital stay...

Dad ended up bringing her, her coloring books & pencils to pass the time while at the hospital

Hospital Selfies

another cute pregnant nurse that Bailey had...

***FINALLY***  taking out the pick line!!! It was SOOOOO itchy-

Flowers that came to the hospital from G&G Gillett, S&M Gillett, the tulips were from Kim Huish and the SUNSHINE Basket was from Merilee Parke

  AND FINALLY WE are HOME!!!!

Monday, March 21^st

Everything with Bailey is fine, but want to let you know what's

happened. Over the course of a few months time Bailey has been losing

weight & with every symptom we've come across, now looking back, we

had an rationalization/ explanation. So, she started losing weight back in November/December but she was working more, watching her eating & drinking a ton so we brushed it off, until more recently the last two weeks she was hungry

but everything was making her sick, & drinking even more.
 
She has had a lot of stomach problems over the last 4 months, but again

rationalizing it that she's struggling w dairy, like Mike. Struggling

with getting sick to her stomach after eating certain foods, like Mike.
 
She has been tired lately but within the past 2 to 3 weeks it's been more

to an extreme, however we again rationalized it as she's working late

every other night for work & she is also a teenager. Always cold,

but losing weight your body has to adjust- again another

rationalization.
 
However, within the last 2 weeks she was

always tired, sick & nauseated if she ate or not. Her last period

she was REALLY sick w cramps, throwing up, back pain etc. but some of

that is common w her cycle, so again we rationalized. As of last Friday

she told me of a lump on her back. (This turns out to be nothing more

than a muscle knot that's over her vertebrate that is more painful bc of

 her diagnosis but worried it was maybe something more/cancerous. But

not!) We've been wanting to see a Dr but w her now 18 yrs old, do we see

 new family practitioner or see new Dr that took over for Dr Glade. Then

 Sunday night at Gmas, Bailey was sick very quickly, so we headed home

quickly! She thought it might be the meat she ate that night, however no one else was sick to their stomach like she was. We describe her as kind of slumpy & lethargic.    
 
Monday morning she still wasn’t feeling very well and hungry but nauseas after eating a little. Mike & I came to the

conclusion that she might be diabetic & all her symptoms were now coming

to focus. I had googled diabetes symptoms & she had most of them but not all.  I had to speak w the Dr Glades nurse Darlene before making an

appt. when she finally called me back, she sd that this would be new to

them if it was diabetes bc Bay is now 18 yrs old & they could see

her but they would direct her to somewhere else bc she's 18. Primary

Children's would maybe see her but they also would direct her elsewhere,

 so our appt wasn't until 3:30 Monday. Darlene sd she'd check into

Endocrinologist Drs etc during the day before our appt.
 
Bailey has lost a lot of weight within the past few months, nausea, fatigue,

leg cramping & urination etc all are signs of diabetes. Dr Jones took a

simple test to determine her numbers. Her numbers were bad but not HUGE.

After checking in, they took her weight, height, & then had her give them a urine sample.  When he poked her finger she was 413 when arriving at Dr Glade/Jones. He checked her lump, (which was just a muscle knot that happened to be over her vertebrate so it maybe hurt more than usual. They took

all her readings, gave us his thoughts of Yes, it was diabetes & then he sent us onto the ER at Utah Valley Regional as of

4:30 Monday. We checked in around 5:00-5:30, took her readings which happen to be 423 now. They are trying to control her

numbers however upon arrival they got one Iv line in at 5:30 pm, but

were unable to get a much needed 2nd line in, until 2am this morning due

to dehydration & her being a "Popsicle" as the Drs & nurses

refer her as. Her veins were nothing & she was in a lot of pain from

"trying", so the room was a sauna & she had probably 10 blankets on

her, trying to get her body heat up & veins to get bigger.
 
She so far has been diagnosed with Type 1 Diabetes. So she has been poked,

stuck & blood draws every 20-30 mins since arriving here. The first night was also 20-30 minutes of poking throughout the night.  It's been a

cat nap sleepless night but she's doing a lot better than when we first

arrived & I didn't know I parked a mile from the ER (lots of

construction) & made her walk into the ER. But didn't want to leave

her for a minute to run back & get the car. Since she wasn’t feeling well & breathing heavy.
 
Her numbers are lower than the 423 when we first arrived but bc they couldn't get in a 2nd iv until 2 am, her numbers are not regulating like they want them

yet, so they ordered a pick line this morning, which they took her off

the insulin so she could get that in but it took longer than expected so

that made her numbers go back up from the 139 at one time up to over

200 again. We are now just currently doing the sticking & poking

every 20-30 mins to track her numbers. She is only eating ice chips

& is on a required fasting from food. Which they had hoped she'd be

able to eat breakfast but it's not looking like that anymore. She went a full 48 hours of fasting on just ice chips. I tried to hang in there with her on the fasting part- it’s a real struggle to see your kids hurting or fasting because they have to, not because they want too.

We thought each day that we would be heading home in the afternoon, but as each afternoon came, we were told we would be spending another night. Because of her being on the insulin drip, and then her potassium levels went lower than they wanted.

- Monday, March 21^st -

Drops it to 250 range then start potassium which will increase numbers

255 @ 11:25 pm 
 

- Tuesday, March 22nd -

282 @ 12:30 drank tang drink

258 @ 12:50 started potassium drip

Trying to regulate now, potassium drop 

271 @ 1:45am started insulin

277 @ 2:30 

235 @ 3 & change bag

Blood draw @ 3:30

199 @ 4:11 

167 @ 5:15

139 @ 6:10 am talked about doing a pick line

Gave bag of sugar water at the same time. And phosphate 

They want her #'s in between 90-140

140 @ 7:15 am drank tang (potassium) drink 

Signed paperwork for pick line & stopped insulin until pick line is set 

8am Blood draw -have to stay on schedule

202 @ 8:48 no insulin at this time need her carbon dioxide numbers finally going up

Pick line 9:30 switched out ivies to 3 pick lines

201 @ 9:50 not changed- good thing

192 @ 11:00 am 

171 @ 12 pm

171 @ 12:55 pm

1:23 @ phosphorus 

1:40 pm walked around 2 laps /potty

121 @ 1:57

104 @ 2:45

Diabetes learning/ class 125 @ 3:19

119 @ 3:46 pm

Gave herself insulin 4 pm

135 @ 5 pm

127 @ 6

135 @ 7:10 pm

120 @ 8:12 pm

125 @ 9 pm 

9:30 pm 6th dose of "Tang" potassium drink

Getting closer with numbers getting to where they want them too be! 

123 @ 11:20 pm

# went up to like 153 during the night

On Tuesday, Bailey got a pick line so they could get her medicine to her more directly & quickly, take blood draws etc. with much more ease. I thought I could stand up by Bailey, next to her bed & hold her hand while they inserted the pick line. HOWEVER, with the face mask, standing & seeing a little blood I got weak in the knees & light headed, so I told them I would have to sit down. Too funny!   

- Wednesday March 23 -

Potassium 1 x at 5 am or so then again at 10 am #8 potassium can't get balanced

Sprite Zero 10:15 am

& Trying to get sugar free jello, or pudding 

Between 105-135 this morning 

122 @ 12:08 pm

117 @ 1:12

2:50 insulin shot

Ate grilled cheese, Mac n cheese, chips

153 @ 4:30

263 @ 6 pm

Dinner @ 7:45

Total of 12 potassium orange drinks 

356 @ 10:45 pm

Gave 4 units @ 11:30

On Wednesday, we asked Bailey to get more involved with testing herself, etc. This was also the first day she ate at the hospital since being checked in Monday. Bailey fasted on just ice chips for 48 hours. And when she FINALLY ate, she was sooooo ready! She ordered a Grilled Cheese sandwich, Mac n’ Cheese & sun chips. It was also Wednesday night that she started giving herself her own insulin shots. It took a good while before she stuck the needle into her side, but she did it. It was a total case of the mental head game- the nurses & I waited patiently until she was ready.

- Thursday March 24th -

272 @ 2 am

Give 2 units @ 2:05 am

Potassium drink 5:45 am

252 @ 5:45 am

Waiting on next insulin for brkfst 

252 @ 7:30 am 

Potassium drink 8:15 am 

Potassium pill

Potassium pill 11:15am 

Gave 23 of Lantis up from 18

11:30 Ours 337 & Hospital was 292 

12 pm Ours 301 & hospital was 289

Gave 14 insulin before lunch 

352 ours 326 @ 5:45

Gave 15 insulin before 15 mins dinner

Ate dinner 100 g @ 6 pm

10:35 pm bedtime ours 339  Hospital 318

Gave 4 units @ 10:40 pm

- Friday, March 25th -

228 ours hospital 206 @ 2:15 am 

Gave 1 unit @ 2:30 am 

4 am blood draw

5:45 am 4.5 down to 3.1 potassium 

Orange drink 5:45 am

7:45 am 202 ours  218 hospital 

Ordered brkfst 8:05 am

Gave 13 units for food @ 8:30 

Ate at 8:55 am

Drank potassium drink 9:30

10:30 took blood draw

Potassium levels back up so eat lunch here then Dr Nichols will come to sign us out

234 ours  hospital 244 

Gave 18 units for food at 12:15 pm 

Ate at 12:35 pm 

Released at 1:30 on Friday

7:15 - 228

Gave 15 units 

11 pm - 193

Gave 5 units

These numbers are maybe exactly right but close. Some numbers that we took in the middle of the night, I was very tired & did the best I could to remember what & when we did them.

We had many visitors over the course of Monday night- Friday afternoon. She received a soft cuddly blanket from the Powell’s, flowers from G&G Gillett, Scott & Michelle, Todd & Rachel & Huish’s. She also received some slippers from G&G Paskett and some finger & toenail clippers from Dayton & a magazine from Digi. The Powell’s, G&G Gillett, Tanner, Digi & Dayton, G&G Paskett, Dad & Madi, Kim, & Josh (a boy Bailey likes right now) all came to visit her during her stay.

Each day we were told that we probably be heading home that afternoon, so I chose to stay with Bailey & not leave her side. However, we heard that Wednesday, Thursday & FINALLY Friday we did get to go home!

During our stay we had some GREAT doctors, nurses, techs & Glucose mngmt team members! We tried to laugh & enjoy our time while we were there, even though we just wanted to be home. We had diabetes/glucose classes, dietician, information overload a couple of times a day, each & every day. The last couple of days it was getting tougher & tougher to stay there because her potassium levels couldn’t stay up above 4.0. By the time we left the hospital she had drank that orange nasty drink over 20 times & taken the HORSE PILL probably 5 times…

     
 
I'm sorry to inform you all of it this way but can't call everyone &

it's too long of a text. She is trying to sleep when she can but has

been very nervous, & scared. We did say a little prayer before

entering the ER yesterday & she been very strong & brave! So

very proud of her- This is a very manageable disease & grateful that

it's not something else that we thought it might be that we thought was

worse.