Thursday, August 12, 2010

Please Don't Take My Sunshine Away

You are my sunshine.
My only sunshine.
You make me happy when skies are gray.
You'll never know, dear
How much I love you.
Please don't take my sunshine away.

A tear rolls down my face and hits the hospital bed where my baby girl is sleeping. I can hardly face the situation in front of me.

As I so vividly remember it, we'd been in the hospital for a day and a half, and as I sing my baby to sleep, I can't help but break down and cry a little. She has E. coli 0157:H7. And is showing symtoms for a particularly dangerous complication called hemolytic uremic syndrome or HUS.

It has been quite a battle. Though I know the very worst is over, and I finally have time to share the story, it still gives me chills to think how fast it all happened, and how close we were to losing her.

Below are comments as well as the Facebook messages I used to keep family and friends updated on Riley's condition:

Tammy, Riley's babysitter was going to be out Wed-Fri for vacation. After a backup babysitter fell through, I finally was able to get her into a church-based daycare called Christ Lutheran Children's Daycare Center in the town I work in.

I went by to fill out her info. and check it out. It seemed fine, people seemed caring. The kids seemed happy. Looked good to me.

So I took her there Wednesday morning. I checked on her at lunch, she was napping. I thought everything seemed just fine.

As I picked Riley up, one of the ladies told me that Riley had a great time, ate hotdogs for lunch, and had a good hour and a half nap. Oh, and that diarrhea had been going around their daycare, and to be aware of it. OK?

The next day, Riley stays with her cousin's at Aunt Amber's house. She has so many dirty diapers, that by lunch time, her bottom is completely broken out and burned from stomach acids. I called the nurse's line to ask for some sulfadiazine (burn) cream. It helps some, but she has probably 10 dirty diapers that day, WAY above normal.

At this point, I'm thinking GREAT, she has the bug going around. No big deal though, right? Just a couple of sick days, and she'll be done.

But instead, of tapering off after a day, it got worse. Much worse.

She went back to the Christ Lutheran daycare on Friday. I gave them instructions to use the burn cream, and that she probably had the bug. They didn't seem to flinch at all, nor did they alert me of any concerns when I picked her up at the end of the day. But that evening was strange. She was fussy and had several dirty diapers. I decided to take her to the walk-in clinic the next morning.

The next day, Saturday, while Daddy was gone to look at some farm equipment, Riley had dirty diapers nearly every hour. They were so painful for her. She would be playing, walking around, and just being herself, when all of a sudden, she would just stop, dead in her tracks, clench up, and bend her knees and fall over to the ground, screaming and writhing in pain. The awful stomach cramps would last a couple of minutes.

This was the case all day long. I took her in to the dr. that morning to make sure everything was okay. The dr. was concerned that she had 10+ diapers/day and had a red throat, thinking she may have a bacterial infection such as E. coli or salmonella, etc. She wanted me to send in a sample for testing, but gave Riley a Rx of antacid to help with the stomach cramps.

Riley made it the rest of the day, but Sunday again got worse. Now she was having dirty diapers nearly every 15-30 minutes! It was a struggle to decide whether or not to take her to the ER, because I'll be the first to admit, sometimes I'm overprotective (well, all the time), but just as I made up my mind that I was FOR SURE going, we got a call from Dr. Webb (Riley's Dr.) with some scary news.

July 19 3:23 PM

We took her to the ER yesterday and found out she had a toxin in her system linked to E. coli. All of her bloodwork... which getting it was just awful... but her electrolytes, iron, white blood cell count, hemoglobin, etc. all came back normal! So, we got to go back home instead of to Tulsa or OKC!

Riley's doing better... for now. She has been having nasty stomach cramps and dirty diapers every 15-30 minutes since Saturday.

She ended up sleeping all night thank goodness, and has been doing much, much better today. We got a prescription for an antacid that still allows her body to flush out the toxin, but along with gas drops, make the stomach cramps less painful. Thanks so much for everyone's prayers. We still have to watch her carefully this week.

There is still a chance that she will have to go to the hospital. But so far, so good! Hope it stays this way!! :)

Unfortunately, we weren't so lucky. Riley kept up her progress until Tuesday, when she woke up and absolutely refused to eat or drink. I didn't know this, however, and since she had done so well on Monday with me, I had gone to work and Great-Grandma Janet stayed home with her. That evening, I tried to get her to eat/drink as much as possible, but I practically had to force it down. I knew we had a follow-up appt. the next day, so I rescheduled her afternoon appt. for the morning and took her in. Dr. Webb was concerned with Riley not eating/drinking, so she did a blood test. Riley was pretty dehydrated, had low electrolytes, and was anemic. Which are the first signs of HUS. Thanks to Dr. Webb's quick response, we caught it before it was too late.

That evening, July 21, we were sent to the ER at OU Children's hospital in OKC. After two blood tests, 2 IV ports, several blood pressure and temperature checks, IV fluids, and roughly 4 hours, we were told we were staying at least for the night and were admitted to room 812 about midnight.

July 22 at 10:52AM


July 22 at 7:38PM

She is finally sleeping. We've given her Tylenol to help her relax. All the blood tests are so awful... I can hardly imagine the fear and pain that she is going through right now. She gets so worked up and then wears herself out until she just konks out. Such a rough week. No more blood tests until the morning. I pray for a good night and good test results! Please let her get better!

I felt so helpless at this point. My little girl, who only a week ago was perfectly healthy and full of life, is now suffering from pains only she and God know. I can do nothing to help her. I didn't leave her side all day long. I don't think I could have if I tried. I was so sad. I tried to sing to her most as much as possible. She just didn't feel good and was understandably fussy all day...

Not to mention not having the use of one arm and one leg, which were rendered useless by splints covering up her IV's.

And blood pressure and temperature checks every two hours.

AND being woken up from a nap when it took 4 hours to finally fall asleep.

I swear I could've beaten the you-know-what out of one of those nurses...

July 23 at 4:47AM

She has E. coli and the risk of developing HUS which attacks her red blood cells and platlets and as a result... her kidneys.

July 23 at 4:53AM

We think it came from the new church-based daycare she attended two days last week. they tolf me diarrhea was going around. A kid came in the same day we got sent to OK with it also. I just hope there aren't any more. The health dept. is doing an investigation. Hopefully they can nail down the source.

July 23 at 5:40AM

Thank you so much to everyone. It really makes us feel like we aren't going through this alone. We're all so lucky to have all the support and love from you all.

July 23 at 8:46PM

Her results today were somewhat better. Hemoglobin/red blood cells were higher but platlets were lower. Her kidneys tested normal... so overall... pretty good :) She was puffed up like a balloon from all of IV fluids so they turned that off to alievate the swelling and see if she would drink some on her own.

She ended up having a really good day. Angela and Caylee visited us and brought a fun wooden fishing game and balloons. Also played with Grammie & Pop. She'll have another blood test first thing tomorrow. Praying that everything is good!!!!!

She had a better day today... finally! Though her platelets were lower, her red blood cells came up, which were getting dangerously low, and would've required blood transfusions.

Some company to give her entertainment as well as Mommy and Daddy a break was just what we all needed. This was the tipping point of our week. Things just seemed to be so much better, her mood was better, she started eating/drinking better.

The only thing was, I started to feel a little sick... and had awful stomach cramps. I honestly thought it was just nerves, however, it wasn't too coincidental since Riley had E. coli. So, I went to Presbyterian hospital, which is connected to OU Children's. I checked into the ER, got some IV fluids to rehydrate, some morphine for the pain, and submitted a sample to test for E. coli.

The sample came back positive. The good news is that I was able to be treated with antibiotics. 1 week of treatment was all I had to put up with. It really wasn't any big deal for me, thank goodness.

July 24 at 6:14AM

Just sent off more bloodwork. She had such a good day yesterday and drank and ate so well :) She even had 12 oz. of milk just before bedtime... which is a lot for Riley even when she is feeling well! She had more milk after her blood was drawn but is now sleeping. I'm praying this test turns out good!

That night I had slept so hard, after 2 days of virtually little to no sleep. I woke up of course when the nurses came in to draw blood, but I almost instantly fell asleep again afterwards.

Apparently I slept straight through the doctor coming in to tell us the results of Riley's blood test.

I finally woke when Ryan nudged me saying, Krissy, guess what?!


July 24 at 8:38AM

Her bloodwork was good!! Everything was going back to normal!! We are going home today!!!!! Thanks everyone for your prayers!

July 24 at 3:57PM

Heading home!! =)

July 24 at 9:03pm

She's doing just great. Glad to be able to run and play again! Ate and drank good this evening... and acted like her old self :) Sleeping now. Hope she has a good night!

July 25 at 9:28PM

I am so thankful for great friends & family. For Riley's health. For a freshly sanitized house thanks to Mom & Dad & Grandma Janet. For a wonderful supper thanks to a great friend Linda. And for all of the prayers, texts messages, and gifts that carried us through this long tough week!
Since I got infected also, I stayed home with Riley the next week.

My gosh, she was sooo happy. It was like she missed being able to play so much she would never take it for granted again. We took wagon rides every morning.

July 31 at 11:37PM

It has been one week since Riley was discharged from the hospital... so hard to believe... and so glad she's going to be ok! Sad to miss all of our family & friends tonight at the wedding. We just weren't sure if she was still contagious and didn't want any other babies getting sick! Congrats to Sara & Brandon!

I was able to go back to work the next week. Great Grandma stayed home with Riley for us. Then began the LONG process of flushing the bacteria and toxins out of her system. I started submitting stool samples to the health department.

Bad Idea.

Unless you don't have a job and are able to watch your kids at home. And don't care about going out in public. Or seeing family and friends. You know, have a life?

It was 8 days before I got the results on her stool sample. 8 days.

August 4 at 11:14PM

Found out today the sample of Riley's I sent in last Tues tested positive again for e. coli. She's not in danger but her system is still trying to fight it off completely. So we're starting over and taking more samples in for testing... have to have 2 negatives before she goes back to daycare...

This time, I talked to Riley's pediatrician and sent the next sample to the Warren clinic's lab.

THE. NEXT. DAY. I learned the results. 1 point for timeliness, 1 deduction for end result. The test was still positive. Oh well, it's not their fault, and Riley still feels well!

August 6 at 10:15PM

Still testing positive for e. coli. She is still doing really good and acts happy like her old self :) But we'll have to keep testing until we get a couple negatives... hope to get them soon!

August 6 at 10:18PM

Thanks everyone for your prayers!

She's doing well. Really, you couldn't tell that there was anything wrong with her at all... she's eating and drinking well again and is happy as can be... but until she gets it all out of her system, she has to stay home :( And thank goodness, I sure don't want anyone to go through what we did in the hospital.

August 8 at 9:39PM

Riley's red blood cells and platlets are back to normal levels! She is still a little anemic, but it's not at a dangerous level. But, Riley's two tests from last Fri & Sat came back positive for e. coli. My Grandma has been staying with her at everyday. Thank goodness for family and friends... but I am so ready for things to be back to normal again!!

August 12 at 6:50PM

It has been 3 weeks since coming home from OU Children's and Riley STILL has e. coli. We are testing her immunoglobulin levels today to see if she has an immune system deficiency. If so, a series of gamma globulin shots should take care of the problem! I hope so!!!

August 13 at 10:15AM

Riley's immunoglobulin levels tested normal... so we're just going to keep sending in samples and hope they test negative soon!

So, things could be worse, and we are so thankful that her immune system is healthy. (I knew nursing for 10 months would be worthwhile!) I am just bumfuzzled as to why it is still in her system, and am scared of the damage it may be doing. I just pray it will all be over soon. Till then, we'll keep testing...