Thursday, July 4, 2013


Monday Emma had her blood and platelet transfusions, then bright and early on Tuesday morning, we arrived at the hospital for her surgery.  The surgery was to give her a central line (tunneled) and to remove one of her ovaries to preserve her fertility.

We arrived and went into a room right away.  The nurse started asking MILLIONS and MILLIONS of questions (perhaps that is a slight exaggeration).  Then outside the door, Emma caught a glimpse of a medical clown, which if you didn't know, she had met him in the hem/onc clinic when the nurse had gone to get Emma a craft and came back with a clown.  Ever since then, she's been quite fascinated with him and has loved seeing him when she goes to the hospital.

So, the nurse asked me lots of questions while Paul the clown hung out with Emma and made her experience way more exciting, way less stressful, and super awesome for her.  We've become fans of medical clowns really fast after seeing how Emma has responded.  I think every children's hospital should have them (and they aren't scary clowns...they are more like circus performers who play and make it lots of fun).

Here's what Emma was doing while I talked with the nurse. Ani was the photographer.  (I quickly set the camera settings and then gave it to her, but then later realized I didn't get it quite right.  So, pardon the poorly exposed photos, and I don't have my usual programs to edit to fix it, just used picasa for a quick edit...)

Teaching her some hat tricks:

Then it was time to be examined, which Emma does not like.  Usually she will refuse a ton and not be cooperative, but it just took a few words from her new best friend, and she allowed them to do it...

...and rolled her eyes a lot when they did it.

This lovely lady is the OBGYN that came to see Emma because she was doing the ovary removal for her.  She's helping us preserve Emma's ovary so that she'll have the chance to have babies in the future.  The doctor is AWESOME.  And, she's a Texan.  Obviously that makes her extra awesome.

Then they played a ring toss game.  They had a few going at the same time, but it doesn't seem like we got photos of that.

Then Emma was asked to change into the hospital gown.  She decided to wear her hat too:

Then it was time to walk to the room to put her to sleep:

She didn't want to ride on the bed.  Instead she chose to walk next to him all the way:

Here's a little video that Ani took (here's a direct link if that doesn't work:

Once we got to the room, she got on a little bed.  She kept saying she was scared, but she didn't fight or anything.  They kept the mask with the gas right near her face, and soon she went to sleep.  She looked sweet.

Then we went out into the waiting room to wait.  We were told it would take about four hours.  I don't actually know how long it all took because I forgot to look at the time.  While waiting, I knocked Ani's drink onto the floor on accident and they had to call house keeping to clean it up.  Then we talked with Paul (medical clown) a little because we were curious what his life story was a bit, which we found interesting.  Then they called us back into one of the little private rooms.

The central line doctor came out and said she got Emma's central line in on the first try.

Then we went out and waited a while.  Most of what we talked about was really stupid and made us laugh hysterically.  I really think there is something wrong with our family and how we behave when we are stressed.  It's like we can't stop laughing sometimes.

After a while, we were told to meet the next doctor in another little private room.  She said that Emma's ovary removal went really well.  She showed us these photos of Emma's ovary and what it looked like afterwards.  I apologize if this grosses anyone out.  I find it fascinating and know many other people do too, which is why I've posted these here.  You can see the white little part in there - that's her ovary.  The doctor looked at both ovaries and took the larger of the two.  She said Emma's ovaries looked fantastic and that nothing appeared wrong with them.  Emma's uterus also looked great, which is something that can have troubles with FA girls.

You can click to see it larger...or just scroll on through if you're a coward...

This is after she removed it:

I can't always remember where I post things, and I can't remember if I've explained it here on the blog or if I've only explained it on our FB page.  So, I'll explain it again.  The bone marrow transplant process will sterilize Emma.  She won't be able to have children after this.  But they are doing a new study at this hospital, and they are hoping to come up with a solution to that problem.  Since Emma is not a mature woman, they can't take eggs and freeze them.  Instead, they are taking an ovary.  They'll slice and dice the ovary a special way and will freeze it.  Then when Emma is old enough to have children, they'll place the strip of eggs on her remaining ovary and it'll somehow activate the eggs and send them out.

Back to our story:

Here's Emma right as we walked up and saw her.  She looked like she was in pain to me.  They ended up giving her some meds.

Our first nurse was great.  Then she went to lunch, and our second nurse was great too...except for the fact that she was SICK!!  Ugh.  Not amusing.  That sent me into crazy momma bear protective mode, but luckily we were transferred pretty quickly to Emma's room.

Here's Auntie Ani with Emma, waiting for the elevator to take us up:

Before we went into Emma's room, we cleaned and sanitized and changed sheets and Emma's gown really quick because of potential germs from the previous nurse (she had taken care of Emma for about 30 minutes before I realized she was sick).

Emma was pretty tired.  She watched TV and dosed a bit.

Ella came up, and I nursed her to sleep.  It was good to see her.  I hadn't seen her much the day before or that day either.  I snuggled her for a few and then sent her home with my sister and niece for the night...hoping she'd sleep okay since she's so used to sleeping by me at night.

That night was fairly uneventful.  Emma didn't need much in the way of pain meds.  Oh, and speaking of pain meds - prior to her surgery, the pain management team came and talked to us.  They explained the pain pump Emma would be on and how it worked.  She said Emma would come out on it. Then a few hours after surgery, everything was settling down, and we realized Emma didn't have a pain pump.  It ended up being a little bit of a pain trying to get that all sorted out.  She seemed a bit behind on the pain meds...or something.  Part of the problem is they aren't familiar with taking care of children who go through ovary removal.  They don't have a lot to go by and Emma was on enough meds that it was hard for her to explain things (she seems to lose the ability to communicate normal fairly quickly with pain meds like morphine.  She can talk, but she's in such a dream world that it's hard to get her to explain things, etc...).  She seemed upset, but we couldn't figure out why.

I slept for about four hours that night and honestly have no idea how much Emma slept.  She seemed awake whenever I was awake.  Then at 5am my sister told me that Ella wasn't doing too hot.  So, we waited until daylight (not the safest place around here) and I went over and took Ella.  My sister stayed with Emma.

We ended up sleeping a lot that morning and went back over around early afternoon (?).

Emma was quite awake and able to talk more normal.  She wasn't in much pain.  They wanted to get her up and walking.  She wasn't so sure about that.  Before I arrived, they wanted to get her sitting up and turning from side to side...kind of to let her know that she can do it.  My sister told me that Emma was scared and Emma asked if they could pray and ask Jesus to bless her. So, Ani prayed, the nurse bowed her head, and had a quick little prayer.  Then Emma did what she was asked right after.

Right before I got there, I emailed Paul (medical clown) to let him know where we were and to see if there was anyway he could stop by.  He said he doesn't have permission to come to that part of the hospital (yet!!).  Seeing how well Emma does with medical clowns, we REALLY wanted them to come.  When I arrived at the hospital, I asked them if the medical clowns could come.  They told us no and explained procedure and all that stuff.  It was fine, I guess.  It is what it is...right?

Meanwhile, Emma had no idea we had been trying to get the medical clowns there, so she wasn't disappointed.  We were trying to get her to stand up.  PT was there to help with that.  She was scared and didn't want to do it.  We explained how important it was to get moving and walking because it'll help her not hurt so much with walking.  She asked if we could pray.  So, I said a little prayer for her.  PT was there too and was just fine participating, which I thought was thoughtful of them.

Then a minute later, she was standing.  She wobbly walked and stood on the scale they had to get her weight.  Then she looked up and saw the medical clowns out the window.  She was so excited.  We were all surprised they were there.  We weren't quite sure how that had happened, but it had, and that was cool.

They were there for...oh, I have no idea.  Maybe 30 minutes?  Here's a little clip of them (yes, I'm totally turning into a commercial for medical clowns because I think more people should request them and get them into the hospitals everywhere...all floors and units for kids):

Clowns entertaining her in her room:

Then she wanted to go on a walk outside the room.  She didn't want to stop.  Paul played her some theme music while she walked:

While she walked, she commented that Jesus was helping her walk and asked our PT if she knew Jesus.  She said she knew who he was.  Emma talked to her about it for a little while.  It was really cute.

We pretty much had to make her stop walking so she wouldn't overdo it.  She refused to sit down, though, and she sat in her wheelchair and painted for a while.  She was WAY more herself after the clowns visited.  It's almost like they work magic on her.  When the PT left, she said bye to Emma and Emma said, "Bye, have a nice day!" and we all looked at each other in shock.  Emma never says nice things to them when they leave!  It seemed quite connected to the visit from the medical clowns.

THEN...she was doing well.  Seemed quite content after that until they gave her some morphine because they were doing a dressing change on her c-line.

When they gave her the morphine, she entered the dreamlike state again.  She looked agitated and on the verge of tears a lot.  She wasn't quite herself.  It seems to be a side effect of the meds.

About 3-4 hours later (around 7-8pm), we decided I would leave and spend the night with Ella who needed some good one-on-one time with momma.  Since Emma was doing so well and would be coming out of her morphine haze soon, we figured it out be fine.  Ani, my sister, stayed with her.

I slept pretty good.  Ella too.  It was nice to spend some time with her, but I thought about Emma constantly and hoped she was doing fine (ella wasn't allowed there after visiting hours).  Ani told me that Emma was getting really nauseous and thought she was going to throw up.  I told her to try getting her to eat to see if she would feel better.  She said that as soon as the food got there, Emma said she was going to throw up.  So, Ani ran around like a crazy person to find something for Emma to throw up in, and Emma burped a big burp and then was just fine.  hehe.

Then Emma's legs were bothering her a lot.  She was agitated and not feeling well.  That morning, Ani told me Emma hardly slept and that her legs were really bothering her.  She said Emma wanted me to hurry and come over.

When I saw her, she didn't look quite right.  She looked agitated and upset and on the verge of tears.  Ani said she'd been like that all night.  She immediately told me that she wanted to go on a walk, wanted me to push her in the wheelchair.  She seemed somewhat desperate.  She thought it would help her leg.  I didn't know how it would do that, but I didn't say anything - just tried it.  We walked her back and forth in the wheelchair for about 45 minutes in a hallway.  She finally said her leg was feeling better.

She seemed to be in a daze - like how morphine does it, but it had been close to 16 hours since she had it.  It shouldn't have been still affecting her that way.

All morning, past noon, Emma didn't seem herself.  You can see it here.  She had this look all morning.

We fed Emma and she perked up a tiny bit.  Then my sister and niece went back home with the baby.  I told Emma it was time to sleep.  Put some nice Enya music on, tucked her in, and cleaned the room while she dozed off and finally slept.  We decided she was exhausted from lack of sleep.  It had almost been two nights of awful sleep.  Her thyroid was off (long story, but it had been about a week since she had her thyroid meds and her TSH was high, not sure about her Free T4 number or others), and we think it might have been part of why she was struggling to sleep when she actually could sleep.

After getting her to sleep some (of course, they came in 20 min later and woke her up to take her vitals, but I got her back to sleep), she seemed more herself.  Never totally normal, but she was normal enough that I felt confident taking her back home to the RMH.  Here she is finally smiling.

They had switched the orders to have her stay another day but told me if I felt like she could go home that day that they could switch it back.  So, I told them we'd like to go home and when I came back, I saw Emma watching out the window at me:

They got us out pretty fast!  It was nice.  It felt good to be back at the RMH.

She was still a little "off" and was in a dream world a lot.

That night we watched the fireworks.  She loved it.  She watched and watched and watched from our window.  We could see 3-4 fireworks shows.  We all had our own moments of feeling like crying over how much she liked the fireworks...hoping we weren't witnessing the last time she'd be watching them.

Then after that, she went back into that "mode" she had been in.  Very muchly a dreamworld, whimpering a lot, disagreeing with everything and being very protective of herself...and finally I pretty much picked her up and laid her in bed and told her it was time to sleep.  I realized she was getting so exhausted and not seeming to sleep like normally happens.  She wasn't in pain (according to her), but where one usually falls asleep, she didn't seem able to (thyroid maybe?).  Her leg problem was acting up again.  People have suggested it might be medicine related, like from morphine.  It no longer does that.  Her leg is all good now.

She took the next day to rest and get better too.

I think we were all surprised at how frail she looked through all this.  We didn't expect such "simple" surgeries to wipe her out so much.  We definitely learned we need to keep on top of her sleeping and make her rest because it doesn't always occur to her on her own.  :)

I have more to update on, and I never seem to have enough computer time!  :)  This Sunday we go in to get her admitted for transplant...yikes!


  1. PART Commercial~PART Public Service Announcement~PART Testimonial... Thank you for sharing this experience. We must thank the team at Cincinnati Children's Hospital; from the Child Life Department to Infection Control, the nurses, doctors, PCA's and OT/PT Department for their participation and permission.

    We work hard to treat the situation, to bring joy to a place filled with so much anxiety and pain. July 1 marks the beginning of Circus Mojo's fourth annual contract to bring medical clowning, or what we call Circus Wellness (tm), a.k.a. Mojo Medicine, to "Children of All Ages." While that circus phrase is overused, we work hard to engage and empower the patients, parents and staff to "treat" what is healthy versus what is medically wrong and to bring additional humanity to this world class institution. The Cooperative Society--the oldest funding arm of CCHMC--has invested in this project and the cooperation we've received from the Clifton's to CCHMC has been wonderful. From a quality of care/life perspective the arts and circus performers have much to offer.

    Emma and her entire family are gifts to the movement of Social Circus: circus with the goal of social change.

    1. I have been proud to know Paul his entire life.
      He has (almost) always been a joyful suprise
      It is a joy to share his MoJo

    2. I ditto Dad's sentiment and commend Cincinnati Children's for their MoJo in treating so many with such compassion and changing the outcome through novel approaches to wellness.
      Love always,
      Pauly the Clown's Mom