Wednesday, January 2, 2013

One Week

It has now been one week since Miss Riley got sick. One week of pure hell. I still have trouble remembering what day it is.

For those of you who don't know how we got here I'll give you a little back story.

Bad cell phone picture but, this was Riley Christmas Day!

Christmas Day Riley was the life of our family get together. Laughing, clapping, smiling, goofing around with her Grandmas/Grandpas, Aunt, Uncle and Brothers. After putting Riley to bed we heard her wake up around 8/830. Mason, was still awake fighting sleep after a late nap so I ended up getting Riley up and laying with her in Logan's bed because she was fussy and felt warm. I gave her a dose of Tylenol and more of her bottle and we both fell asleep.

Around 1/130, she woke up and was burning up. I attempted to give her another dose of Tylenol and made half a bottle. At that time she threw up the medicine/bottle and was pretty fussy. We both tried to calm her down and at some point Dave took her out to the family room to rock her and they both fell asleep.

Around 515/530 I woke up and heard Riley fussing and Dave was having a difficult time getting her back to sleep. I ended up going to tell Dave we should try to give her more medicine. When Dave handed Riley to me she was hot. After having a child who has already had 2 febrile seizures, I told Dave to hurry and get her the medicine. Not 2 seconds later I looked down and noticed she was starting to seize. Feeling panicked Dave ran to run a bath. I was stripping down to get in the bath with her when we realized we just needed to call 911. We also learned you should NOT put a febrile baby in a bath!

Dave held her while I called 911 and he timed her seizure because he remembered from Logan's that they'd be asking us how long it lasted etc.

The paramedics arrived looked her over and believed it to be typical febrile seizure symptoms. As I gathered a diaper bag Dave got ready to head to the hospital with her. Around the time that they were loading in the ambulance Logan woke up. It was a cold and rainy morning but, I carried him outside to see them pull away and Logan was given some stickers from the nice fireman.

I called my mom to come stay with Mason and Logan and she headed over ASAP.

Once I arrived at the hospital, Riley was tired and wanted to be held by either myself or Dave. They tested her for a UTI, did a chest xray and diagnosed her with a "virus". We were discharged and headed home mid morning.

We got home and Riley was extremely sleepy. Didn't seem unusual to us as she had just had what we thought was a febrile seizure.

Around 230 I called the pediatricians office because she just didn't seem right and was encouraged by the nurse to keep doing what we were doing (holding her, feeding her pedialyte and water via syringe). I also made an appointment for Riley to be seen in the office the next day.

We continued what we were told to do and again at night I laid in Logan's bed with her and continuously tried to get her to take fluids. Around 2am I just got this sinking feeling that something was really wrong. Again, I called the nurses line and they agreed we needed to go back to the ER. Dave got dressed I packed them up again and off they went. At the time I honestly thought that maybe she was dehydrated and they'd give her some fluids and she'd be back home. I was so wrong.

Again, I called my mom and she headed back over to our house. I headed to the ER and the doctor on duty had her seen immediately. Antibiotics were ordered, a chest xray and a spinal tap. Once I heard spinal tap I just knew meningitis.

After being told we were being admitted I asked about CHOC. After consulting with the on call pediatrician they agreed and transportation started to be arranged. The thing that bothered us most was the lack of urgency at this point.

I will leave it all at that for now as I think that gives you the back story and the rest of the ER story can wait for another time. It was horrible.....

So, here we are today. Fighting for our baby and trying to still wrap our heads around just how this happened and how we got here to CHOC.

We drive up and down the 57 each day, trade off night duty, juggle childcare and household stuff and pray this nightmare will end. Thankfully, we have an amazing support system. A family that will do anything for Miss Riley and for us and amazing friends. On a larger scale we have all of you.

In the mornings when I come to the hospital I drive over a bridge off the fwy. It feels like the bridge between our two worlds right now. Home and the hospital.

Dave, Megan, Logan, Mason and courageous Riley

1 comment:

  1. "A bridge between our two worlds" - I know exactly what you are doing such an amazing job keeping everyone updated..I applaud you! Someday you're sweet baby girl will understand the depths of her mommy and daddy's love and how far they went to protect her. Xoxo