Somebody Call 9-1-1

My parents left Raelynn with Richelle and I while they went to my cousin Mary's wedding in St. Louis.  Richelle and I divided up Raelynn's time between us, and everything was working out according to plan. On Tuesday night, Richelle dropped Raelynn off at my house between 8-9pm.  As soon as they arrived, Raelynn went into the downstairs bathroom and I got a phone call from work, so Richelle snuck out.  While I was locking the door behind Richelle, I could hear Raelynn calling for her.  I was still on the phone dealing with a work issue, so I walked down the hallway to tell Raelynn Richelle left...and to see what she needed.

**note:  without going into more details than necessary to make the story understandable, I will share this tidbit of info about Raelynn:  One of Raelynn's most lovable traits is her missing sensors.  Ya know...the ones that you gain as you grow up...the ones that remind you not to tell people what you really think...the ones that remind you farting, burping, etc are not appropriate in public...the ones that keep you quiet in public restrooms, or make you wait until you get home...those little internal sensors your parents teach you about, the ones you learn along the way...usually after embarrassing yourself.  Yep...she's missing them.  I bet she loves life just that much more because they are missing and she doesn't give a crap what you think- and she'll tell you all about it!!**

Having said all that, it is "the norm" for Raelynn to make "noises" we can hear throughout the house while she's in the bathroom, and Tuesday night was no exception.  I opened the bathroom door and asked her what she needed...while listening about my issue at work in my other ear.  She told me, "My tummy is hurting."  I told her I was sorry, but that she'd feel better after she was done in the bathroom.  I closed the door and walked down the hallway.  She's not normally a complainer, but...

I finally finished on the phone...and the sounds/moans seemed more than normal.  I walked back to the bathroom, opened the door and Raelynn looked as if she was going to throw-up, so I grabbed the garbage can.  She vomited a small amount, but it honestly didn't seem genuine.  She seemed to force herself to do it, so I was wondering if she was "faking" an upset stomach to get out of going to work the next day.  I had also kept Rae on Sunday night, so I could take her to work on Monday morning.  By bedtime on Sunday, she had convinced us to let her stay here with Mike until 11am when Richelle finished work and could pick her up.  I figured she was having some sort of anxiety with my parents being out of town...no big deal.

I left the bathroom to get my phone to call Richelle.  Raelynn was calling my name again, so I quickly walked back to the bathroom and opened the door to find Raelynn on the floor in a quasi-fetal position, bum in the air...no underpants.  It was quite the site.  The first thing she told me was, "I'm not going to work tomorrow; I'm sick."  I asked her why she was on the floor and then proceeded to tell her to get off the floor... 

At this point I was sure she was just anxious about work, my parents being gone, etc...so I used my cell phone to take a picture of her to send to Richelle.  I figured I shouldn't be the only one to witness what was going on (which was still kind of comical up to this point)...and she needed to see how serious Raelynn was acting about NOT going to work.  And since both Richelle and I HAD to work on Wednesday, we needed to figure out how to fix this issue.

Then she started crying...real tears.  At first I didn't know what to think.  I've only seen real tears from Raelynn in situations that tears were more than warranted.  Rae is many things, but she's not a crier.  She laid her now mostly naked body on the cold tile and was sweating profusely.  She cried, "My tummy is hurting" many times...and she even belted out a "call 9-1-1!"  Now I knew she wasn't faking anything...at least I didn't think she was, but how can you be sure?

I grabbed the phone and dialed Richelle's number.  When she answered, I yelled into the phone, "What did you feed her!?"  At this point, I thought something she ate for dinner must have upset her stomach beyond anything I'd seen before, or she had food poisoning.  Richelle told me Raelynn had eaten two pieces of pizza for dinner...and that she had eaten the same thing and was not sick.  By this time, Richelle could hear Raelynn's heartbreaking sobs...she was pleading for help and moving around on the floor trying to find a comfortable position.  Sweat was pouring down her face and the belly sobs were literally heartbreaking.  She asked for 9-1-1 more than once, and I wanted to call them.

Before making our final decision about going to the ER, Richelle said she would call Mom and Dad 3-way...Carlys answered and we told her the story.  She said she had never seen Raelynn doing what we were describing and thought we ought to take her to the ER.  Luckily Mike came through the door at that moment, so he helped me get Rae dressed (or at least covered) and into the car while I gathered somethings to take with us.  I left Mike at home in case we needed something...and we stopped to pick up Richelle on our way.

Raelynn sat in the back seat sobbing the entire way.  It was awful. She couldn't tell us where she hurt in any more detail than her "tummy".  Then she started telling us it hurt from "here...all the way down" while motioning with her hand from the top of her chest to the bottom of her belly.  We weren't sure if that meant she was having chest pain, or if it was indigestion...we just knew there was a real problem for those tears to be falling the way they were.

I dropped Richelle and Raelynn off at the door to the ER and found a parking space.  By the time I rushed in, Richelle was trying to get Raelynn signed in.  She told the person working the desk that her little sister with Downs was having chest and stomach pains.  They immediately brought her back to figure out what was wrong.  They started with an EKG...which came back normal.  They did all the normal testing you get done while in triage...and then they quickly moved us into a room in the ER.

From that point, they did a CT scan, an X-Ray, an Ultra Sound, urine test, blood tests...you name it- they did it.  The doctor wanted all these tests done because Raelynn could not explain her pain, what it was, or where it was exactly.  We got it narrowed down, but then she struggled to tell us if one area hurt more or less than another.  She just didn't comprehend what we were asking of her.  Talk about feeling helpless.

By this point, Richelle and I were both thinking she was having an issue with her gallbladder.  Our theory was confirmed by the Ultra Sound Tech.  He told us it looked like a "rock fest" in her gallbladder.  Great.  The doctor finally came back in and said Raelynn's white cell count was elevated, she had "sludge" in her gallbladder, and something about the blood test from her liver wasn't good...so she was going to be admitted.

It took me most of the time in the ER to convince Richelle she needed to work on Wednesday and I would stay home with Rae.  I had to remind her that I had paid sick time or vacation time...and she did not. We came to an agreement that we could both work 1/2 of the day, that way neither of us missed an entire day of work.  Now that Raelynn was being admitted, Richelle wanted to stay.  I told her no...and reminded her that someone had to be home when Anthony left for work in a few short hours...and someone also needed to be there to get the boys ready for school. 

By the time we were headed upstairs, Mike was on his way to bring me some overnight stuff...his second trip to the ER thus far.  Luckily, The hospital is right up 67th and only about 5-6 miles from the house.  We finally got Raelynn settled, so Mike took Richelle to get Rae's C-Pap mask that did not have worn out Velcro.  I guess she keeps her "nice" mask at home and brings an older one when she "travels".  She was having to hold one of the straps in place because the Velcro was worn out.  This wasn't working because of the IV in her right arm....and she can't sleep without the C-Pap.  After getting everything she needed for comfort, Richelle and Mike left to get a few hours of sleep.  Raelynn and I both desperately wanted sleep, but I now know that is impossible at the hospital.

The recliner they provided did not stay reclined without using your body weight to force the footrest out.  Once you started to rest...and possibly sleep....the chair would be completely upright.  There was a second, unused bed in our room, but they asked us not to sleep in it.  After a an hour or two, I couldn't take it anymore in that stupid chair.  I climbed up on the bed and laid in the fetal position on about a 1/4 of the bed...I got about an hour of sleep.  I was just happy I didn't tweak my back in that broken chair.

The night nurse, Sean, came in about 7:15am and told me the surgeon had looked at the test results and scheduled Raelynn to have her gallbladder out at 1:30pm.  I started making all the necessary phone calls...luckily when it's 7:15am here, it's later than that in Missouri.  My parents said they were fine with her having the surgery, if that's what the surgeon thought.  Gallbladder problems run in the family, so this wasn't a complete shocker.

My parents started talking about coming home when Raelynn was admitted.  We had convinced them to stay, but now with surgery pending, I could tell Carlys wanted to come home.  Her voice sounded anxious...and she even said my dad had voiced that he was quite anxious about Raelynn being in the ER and so sick.  I did my best to talk them out of coming home...they were in Missouri for a reason and they needed to stay.  I told them Richelle and I could handle the situation with Raelynn...and if we needed back-up we could call Robyn or Regina.  There are four of us here...plus a million friends my parents have known since the 70's.  They agreed to stay put...and we agreed to keep them informed.

Before surgery, Raelynn's IV needed to be moved from her right arm/elbow area (I'm a phlebotomist and I can't come up with what that stupid part of the arm is called...sheesh) to her left forearm.  Katie, the nurse, had Al (the Charge Nurse) do it.  She said he was the best and never missed.  They were right...he was great and he got it on the first stick.  Which was lucky, because holding Raelynn down or preventing movement is not an easy task.  She cried when they put that IV in her forearm.  I've never had one there...but it sure looked painful.

When the time came, Robyn, Richelle and I followed from behind as they wheeled Raelynn's bed toward pre-op.  She was very nervous...and rightfully so.  They parked Raelynn in the same room Richelle had in pre-op for her gallbladder surgery.  The nurses came over to verify a few things, and then wanted to talk to Raelynn's legal guardians for verification.  I called Carlys and handed the phone to the nurses.  They got what they needed and handed the phone back to me...I told Carlys it would be a few minutes until they took Raelynn back, and that we'd call when they did.  Carlys started sobbing...it was heartbreaking.  She said she just wanted to be there with Raelynn.  I told Carlys everything would be fine and that I understood why she wanted to be there.  I told her I loved her and we hung up. 

Hearing Carlys cry was nearly as heartbreaking as hearing Raelynn sobbing the night before.  At the same time, it did make my heart smile just a teensy bit.  It's comforting to hear Carlys cry...she really does love Raelynn as if she were her own flesh & blood.  I never questioned that she did, although I have questioned why.  It was just a nice reminder of how completely lucky we are to have Carlys in our family.  How many families have been torn apart by cancer, or other awful circumstances, and do not have a Carlys?  Probably most.  We are truly blessed to have Carlys, who loves us each completely, who loves my dad, who loves Raelynn.  She is a miracle...one that has not only kept our family in one piece, but managed to add some pretty cool pieces at the same time.

Raelynn's surgery went well.  While we were in the waiting room, Mike brought us food.  We were also visited by Gene and Joann Saunders...good friends of my parents.  I guess my dad called Gene and asked him to please go check on his family.  That was thoughtful of them to come and sit with us.  I'm pretty sure Gene has sat through many surgeries with our family...so he's an old pro.

The surgeon came out and told us Raelynn was okay and in recovery...the gallbladder was removed and she said it "felt like a beanbag" because of the amount of stones inside.  The doctor believed Raelynn had been suffering with gallbladder issues possibly for years based on what she saw.  She said some people with a high pain tolerance, like Rae, get used to the discomfort as it slowly progresses into what happened on Tuesday night.  Geez...that's awful.  We just stared at each other...and each mentioned some things Raelynn does that could have been signs/symptoms of gallbladder pain, but we all brushed off as quirks...she never once complained of pain before Tuesday night.  Awful.

Rae did not handle post-op well.  She was confused, sore...and I'm sure she hated that hazy feeling you get when you're coming to after being knocked out by those drugs.  She cried some...asking for her mom, her "father", Robyn, me (Richelle was already there)...then Robyn would come in and Raelynn wouldn't want her near her.  Then she'd ask for me...and when I'd come in, she'd get upset all over again.  Stressful.

Things went much better after we were back in her room.  She rested a bit and was able to eat.  She was starving and so thirsty.  It had been about 20+ hours since she'd eaten anything, and other than a few sips of water with her pills, she had not been allowed to drink anything.  Her lips were so chapped and she sucked down whatever we would give her to drink.

After that, things started going in a much better direction.  Raelynn would randomly ask for family members that were not present...she wanted visitors.  Sydney showed up first.  After work she drove up to see Raelynn and even stopped off to get her the cutest stuffed elephant.  Raelynn loves elephants...and this one was wearing a Santa hat.  Mike came after work with flowers and a balloon...and then Regina & Trent came by with a bunch of balloons and Sonic.  She only ate a few bites of her cheeseburger, but she was so happy to have it and to have more visitors.  We all chatted for a bit and then people started heading home.

Richelle ended staying with Raelynn the night of her surgery and let me go home to sleep.  I got back to the hospital around 9:30 or so on Thursday.  We bathed Raelynn and got her ready to go home.  She told us she wanted to wear the hospital gown when she got home, so we borrowed a couple from the pile of them down the hall.  Mike & I agreed our house would be best for Raelynn to get rest.  Richelle's house is full of little boys...and they would want to be with Raelynn...or they would just be behaving like boys.  Plus, Richelle had family in town for Thanksgiving, so it was much easier to let her come with me.  I think it was hard for Richelle to do this, but it worked out for the best.

While I got Raelynn settled in her bed at our house, Mike set-up an extra TV and DVD player for her.  She seemed comfortable and happy most of the time.  She would sleep off and on while watching some of her favorite shows.  We call the guest bedroom "Raelynn's Room" when she's here, but Mike mentioned a while back that we should really make Raelynn her own room to come to.  That way, if she's with us, we still have space for guests and she won't feel anxious to be out of her own bed.

We have plenty of room, so I have been toying with the idea in my head for months.  Now I am really thinking Raelynn should have her own space here.  I always planned for her to have a place of her own in our home...I know long-term she will be a part of our day-to-day family, along with Richelle's (I pray not for years and years...since that would mean my parents would be gone).  After this week, I really want to her room started.  I want the downstairs "office" to become a toy/play room when we figure out how/where to get a baby, so I want to eventually move the office type stuff upstairs (with a much smaller desk).  Maybe I will start thinking harder about what to do for Raelynn in that room...what type of furniture, the size of stuff, what she'll need, etc.  Maybe that would be a good project to keep my mind occupied and off of our empty nursery.

All in all, this week has been emotional and stressful.  I'm thankful for Raelynn in my life...she has always been an amazing part of our family, but the older I get, the more I learn from her...the more I find myself falling completely in love with her...and her missing sensors.

p.s. I'd love to post my intitial picture I sent to Richelle, but it just wouldn't be right.  Funny...but not right. :) LOL