Monday, July 29, 2013

Day -5

Last night from Ani (my sister):

Hello friends! Auntie Boromir(Ani) here!

For the past few nights I have been staying here at the hospital with miss Emma Rose, so her Momma can have some time with the Ella baby. Tonight she started off rather silly and goofy, but missing home got to her. One of my favorite nurses was in here, waiting the last couple minutes until Emma's dose of chemo was done, so she could unhook her, and Emma was showing her some of her toys and drawings. I stood by watching her jabber away so cute and funny, when she grabbed her pink stuffed rabbit to show the nurse. She gave it a squeeze:
"Hi Emma, I love you and miss you. I can't wait until we can all be home together again." her daddy's voice said.
I saw her goofy playfulness disappear, as her shoulders dropped for a moment before she hugged the rabbit to her as close as possible, squeezing it over and over to hear her daddy's voice. There is no force on this planet that could have gotten that rabbit out of her arms. The nurse finished what she was doing and quietly left. I sat and held Emma's hand, but then those quiet little tears turned into sobs. It's hard to comfort her when we have to be cautious of getting too close. I held her and snuggled her, just making sure I didn't breath on her or anything. She felt so tiny in my arms. Every night when we say nighttime prayers she asks me to say it, but tonight she wanted to say it. She asked God to let her be with her family again so she can finally feel happy. It was almost to sad to stand. She finally relaxed and went to sleep. When she got up to use the bathroom a while later she told me she was feeling a little better. 

I know that we have all been discussing feeling extra emotional recently, so in a way it's a relief when she finally expresses herself and lets the sad feelings out. I'm glad she has a way to hear her daddy's voice whenever she needs. I don't think any of us realized how not ready we were for this. 

I'm really grateful that I get to spend tonight with her though. I know that tomo
rrow she will likely start getting sick and that's when her momma will be here through the nights. As emotional as it may be it's nice to be able to have her here with me, I feel like it's the only way to express how much I love her, letting her know I'm right here. I'm also grateful for tonight, because this may be her last comfortable night for a while. 

Something tells me that no matter how hard I try, I won't be sleeping tonight, I'll be too busy watching my little angel, it's so hard to not want to cling to each moment. 


This morning Emma was pretty chipper.  She was happy and playing.

Emma's machine was beeping, so she pushed the call button and waited...and waited for their response. 

This is mostly a pointless video. Was just the last one I took before she rather quickly went downhill.  Here's the link if you need it:

She was in a really good mood and smiling most of the time.

They gave her Fludarbine, which ran over 20 minutes or so.  Then they prepped her with Mesna, which protects the bladder and kidneys.  Then they gave her Cytoxin, which is especially difficult on the bladder and kidneys.  Then they gave her Mesna again to help protect bladder and kidneys (they gave this several times since).  The Cytoxin ran for about an hour. 

She felt good with all of this.


They gave her ATG.

ATG is created in horses or rabbits.  What they do is take human white blood cells and put it in the animal.  Then the animal's body reacts to the foreign invader and creates antibodies to destroy it.  That's what ATG is.  It's the antibodies from the animals to kill of human white blood cells.  They gave that to Emma to kill of her white blood cells. 

Once they gave that to her, she went from feeling happy and chipper to not so much.  Instead of rewriting it all, I'll just copy and paste from our FB page:

They started the ATG and soon Emma went from being chipper to being tired and having a bad headache. She snuggled up to rest and was not herself at all. 

PHOTO:  Emma had been happy until they started adding more devices to monitor her.  She had some heart monitor leads placed on her chest, as well as a pulse ox added to her toe.  She got scared and a little overwhelmed by it.

PHOTO:  This is the ATG.  It hate it.  I know it is doing an important thing, but right now I just can't like it.  It has a brown bag over it so that the sun/light doesn't shine on it.  And because it's a coward.

Her head was hurting and she couldn't sit up anymore and didn't feel well at all:

It was a little shocking how fast she went from feeling good to feeling really bad.

I noticed she kept coughing. I asked her if she was okay. She was. Then a few minutes later she seemed distraught. She told me she felt like she needed more air.

I called the nurse and asked if our nurse could come in because Emma wasn't feeling well.

A couple minutes later Emma was getting distraught again, coughing, saying she couldn't clear her throat, and she was wilting. She needed more air.

I called again and said she was having trouble breathing.  (This is something they said could happen and to call asap because they'd need to get it taken care of.)

Within 30 seconds, three nurses were gowned and in and they turned off her ATG (aka Liquid Evil). They started oxygen and listened to her breathing. Her oxygen was fine, just dipped to 93 but usually was 100.  So, I didn't think she was low on oxygen and was why I was a bit confused about her breathing issues.

Her heart rate had been in the 70's and was now in the 140-150's.

Meanwhile, I had stepped out of the way to give them space to work and watch. I don't like to cry in front of medical personnel and it took every little bit to hold it in.

Soon there were four nurses, each doing something. Then the doctor soon after. 

PHOTO ABOVE:  I was hiding off on the side, so it's not the greatest photo.  There were three other nurses that you couldn't see.  I wasn't sure if they cared if I took pics, so I snuck them with my camera phone since I'm a ninja.

She was given Benadryl and they took cultures, started antibiotics, did a chest X-ray (looks good), and have oxygen for her for comfort. They couldn't figure out why her lips were looking blue and she was shaking all over. BUT, this is common with ATG.  It's also why I hate it.  They did all the testing as a precaution to make sure all is well.

After about 45 minutes, we were back down to just 2 nurses and the doctor explained it was not uncommon with ATG. Then a while after that, back down to one nurse.  Emma was now breathing okay.  Still a really high heart rate, but she wasn't feeling out of breath:
Photo:  They had a nasal cannula on her AND oxygen blowing on her because she wouldn't let them take the nasal cannula off.  Only the air blowing on her was on, not the cannula.

Then a little while later, Emma woke up panicked and said she was going to puke. She threw up, and it looked like she had blood in it.

It's about that time that I wanted to crumble and tell them never mind. We were just kidding. We'll go back home.

We're still at the beginning of all of this and I don't want to see how much worse it'll get.

Her heart rate is still in the 130's. Her fever got up to 104.5. She's completely uncovered now (unlike in the photo).

During all this, I texted Tyler. He called Ani and she's here with us. Now we don't have to worry about Emma being alone while we go eat or pee (we can't do that in her room).

Pleeeease pray that she will do well. I'd be lying if I said I'm not scared. I know God is watching over her. I *know* he can heal her. I just hope he does.

I know it'll get bad before it gets better. Every day is one step closer to the better.

And...Emma has officially decided she wants me to shave my head when her hair falls out. So I'll be doing that. I just need to buy some hats now.

They'll restart the ATG in about 20 minutes.

Emma was awake for a little while once her fever broke a few hours after her breathing issue.  But that didn't last long.  She tried latch hooking but only lasted for about 10 minutes before being too weak to continue.  She's been sleeping most of the time and woke up once to puke (more blood) and has been sleeping the rest of the time.  I've been laying by her and holding my little baby girl in my arms...willing my healthy energy onto her and praying for angels to help her through this.  She's running another fever, around 104.  We have her fully uncovered and ice packs on her (unlike she was in the photo).

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