Monday, July 1, 2013

blood/platelets for surgery

We got up way too early to arrive at the hospital at 7:30 am to start Emma's blood transfusions.

We went to Day Hospital and they gave her a room.  Here she is:

She was excited to be able to take off her mask, though, she was really paranoid and didn't know if she would be okay.  Since there's not many people around, it's okay...and I thought she looked super cute here!

I LOVE this nurse.  She was so sweet and funny and sharp.  Emma likes to roll her eyes and huff and puff over having to do all these things like her temp, blood pressure, and all that.

Child Life came in and Emma showed them her cat video.  It was a child life gal that we hadn't seen before.  She was really nice.  She told us about Sibling Mail, and it seemed pretty cool.  I'll share details once she shares more, but they cover shipping and have some neat ideas to do.

Here Emma is showing the funny cat video...or was she watching the one where goats scream like humans?  I think it was the second one.  We were getting ready for the IV.

The nurse tried once, and it didn't work.  She almost got the vein, but then it wouldn't pull the blood out that she needed.  So, we needed another IV.

Instead of trying again, she called the IV team to come and poke Emma.  That made me think of nurses wearing belts with syringes all around and IV needles weaved together as a vest...walking in slow motion with wind (out of nowhere) blowing their hair...making them look really cool.  But it turns out that's not what they look like.  They look like normal nurses.  Though, I am pretty sure I heard some background theme music playing when the IV team member walked into the room.

I'm getting ahead of myself.  Let me back up.  After the nurse poked once, and before the awesome ninja IV team member walked in, we had a bit of time where we talked with the Child Life gal.  We ended up showing her photos of our family, and Emma ended up in tears.  She was so sad and homesick.  She really wanted daddy and misses her siblings.  So, we FaceTimed with dad.  I think by the end, we were all in tears, including Tyler.

I know I take photos of everything - good, bad, happy, sad.  And, that's on purpose.  I do it for a couple reasons.  One being I want to journal our experience and remember what Emma (we) went through.    Photos are a good way to do that.  Plus, I think photos can tell a story in a way that words can't always do.  I plan on taking photos during transplant too. Emma agrees and told me she's fine with me taking photos during the whole experience, even if she is feeling awful.  She said she wants to remember what we went through.  So...I've warned you now.

Anyway, moving along...

The the theme-song-IV-team-lady-who-should-always-walk-in-slow-motion came in.  She tried Emma's opposite arm, got the vein, then it blew.  So, she went back over to Emma's other arm (the one that was already poked) and she tried there.  That didn't work either.  And, when I say "she tried" the arm - remember that also includes LOTS OF POKING  and LOTS OF REPOSITIONING of the needed!  I had that happen to me once, and it really hurts.

Emma was getting overwhelmed by it.  She has a lot of anxiety when it comes to getting poked for good reason.  She has had a lot of bad experiences.

Here she is after three pokes and feeling very overwhelmed.  She will scream and cry, but she doesn't move or fight physically - only verbally does she get upset.  We were trying to warm up her arms with hot packs to make her veins bigger.  She also drank four things of grape juice.

The ultrasound IV lady came.  This was a new thing to me.  She brought in her ultrasound machine, ultrasounded Emma's left arm.  She declared Emma had baby veins.  So, she tried her other arm.  She had baby veins too.  It's a common problem with FA kids.  Their veins are oddly tiny!

She finally found a spot on the top of Emma's forearm, used the ultrasound to mark the spot and poke the vein...using the ultrasound machine to see the vein.  She got it.  It was interesting and such a relief!  She totally deserves to have her own theme music too.

It took a few minutes to recover emotionally for all involved.  Ani and I may or may not have ended up in tears too.  I can hide behind Emma's head if I start crying.  Not that I'm ashamed of crying over my child's distress, just that in the midst of it all, I don't think it helps calm her if I'm crying too.

Then we needed her to take her Tylenol and Ataracts (sp?) which Ataracts is a replacement for Benedryl.  It's to help prevent an allergic reaction type of deal from the platelets.  She would not take the ataracts.  It was liquid and tasted like mint, which she hates.  Anyway, it was a huge ordeal to get her to take it.  They are so good here.  They were sooooo patient with her.  She finally took it.

Here she is an hour or two later with her breakfast...served near lunch time.  The platelets are running through in the bag hanging behind - yellow looking stuff.

At this time, Emma's blood work showed that her platelets were very low at 16 and her hemoglobin was at 10.  I thought it was odd Emma's hemoglobin was so high, but maybe her transfusion was sticking around.

The platelets (yellow stuff in the bag in the photo above) ran through in about 15-20 minutes.  Very fast!  Blood takes way longer.

When they were done, they came back after 30 minutes and took more blood for another CBC.  That came back showing her platelets were super high (for her - low for healthy people).  They were 130.  However, strange turnaround in that her hemoglobin showed she was at 7.9, which is transfusion ranges...especially if she's having surgery.

After waiting about 45 minutes, they decided to run the test again.  That time also showed it low like that.  So, they for sure decided she needed some red blood.

Meanwhile, Child Life came and used a puppet to show Emma what a central line is going to look like.  It's a hickman line type deal...I think.  It goes in her chest, and threads through to her heart.  It has two tubes that will hang out of her chest and they'll be able to use that in the future for blood or meds or chemo, etc.

 Why Ani is making that expression, we may never know.


Pretend like there is a photo of Ani, Emma, and I playing UNO because that's what we did for a while.  We also ate Emma's leftover food.  Oh, she's on a low bacteria diet.

Then finally, after about fifty million years, her blood came.

There was much rejoicing.

It was 4:30.  We had been there since 7:30, and we were finally getting her blood.  Her blood took three hours to run.

I think the meds wiped her out, but for a little while she was super tired and rested like this.  I tried snuggling her up in blankets, but she wasn't interested.

So, she played UNO with Ani and Kyrie.  Kyrie came over and I took Ella for a little bit.  I also took her back "home" and hung out for a bit.  Then I went back, traded, gave Ella to Ani, and went back over until Emma was done.  I figured Ella needed some momma time!

Ella came in and checked out Emma's stuff.  She seemed quite interested and concerned:

Ella had a lot to say.  She kept holding her hands out like that.

After three hours later, we were done.  We headed home around 7:40 or so.

I caught her expression like this (which she made really quickly) as the tape was being pulled off.  Emma didn't want to sit down, which is why she's standing.

The nurse was super awesome!  We have to be up super early tomorrow.  We are supposed to be there at 6am.  yay.  I am excited for her to finally have a line!!  Then she'll stop having such awful IV/poke experiences.

I am super tired and should go.  I just wanted to make sure to write about today.

Oh, and Ella fell asleep on Ani.  So when we got home, she was sleeping.  We've managed to keep her asleep this whole time, except a small period of time where she was restless and needed some snuggles.

Now I go to bed.  Sorry for any typos!

1 comment:

  1. The photos and words you post are so powerful. You will cherish them forever. I'm sorry for everything your family is having to endure. Emma is one amazing little girl and you are one amazing momma!!!