Tuesday, June 18, 2013

tuesday

Okay, I've been trying to work on catching up the blog with all the days I've missed, but I'm not succeeding.  Instead I'm just getting more and more behind.  So, instead, I'm just going to start from today.  I'll work on past days as I have time (sorry if that's confusing).  I have been keeping FaceBook updated pretty well.  It's just super quick and easy compared to blogging.  I think I'm going to copy/paste the FB posts onto here for missed past days since I know some of you are never on FB.

So...we left June 6th for Cincinnati, OH for a bone marrow transplant for Emma, which I think most of you know.  Appts started June 10th, and we've done a lot of testing.  I'll try to update on that soon so that it's not too confusing chronologically.  

Today we had a play date with the BMT psychologist.  She wanted to get to know Emma a little and become a familiar face for her.  We played a little Go Fish and Princess Uno.  Emma enjoyed it quite a bit.  The psychologist's last name is Roddenberry...so obviously she's pretty awesome.


When we arrived at the hospital, Emma told me that she needed more blood.  She said she was too tired and didn't have energy.  So, when we arrived at the hospital for the playdate, I told them what Emma said.  So, they made a few calls while we were playing and ended up getting hematology to do a finger poke and check her blood.  Her blood results came back right after the playdate ended:


As you can see, her hgb is 7.6.  Her platelets down to 14.

It doesn't show it, but on another test result, it showed that her ANC was 360.  It just keeps on dropping!  ANC is how strong your immune system is.  Hers is SUPER wimpy.

Her hgb isn't tooooooo awful, as awful goes, but her platelets and hemoglobin are horrible.  

After our playdate, we went over to the ped hem/onc clinic and they did an IV, then blood typing/matching.  That took about an hour for them to get the results of that.  Then the blood came.  Even though Emma told me she needed blood and she needed blood work done, she was still quite defiant when it came to getting the blood.  They had child life come and help her work through the process.  They are pretty awesome.  She responded really well to it.

Before they started the blood, I ran to the RMH to get Emma her iPad and to grab some food.  In the parking garage, I met up with my new found friend.  I think his name is Roger.  He's the parking dude down there.  I met him the first day I arrived at the hospital and was super confused.  He was directing traffic, and I asked him where the D elevators were.  He pointed the way.  Then when we were leaving the hospital, he happened to walk by and ask us if we needed help, and we needed help finding the D elevators to leave.  (now it seems rather easy!)  Then we saw him almost every day after that.  Now when we see each other we wave and hug and he's become my adopted dad, I think.  I'm not sure what he thinks about that, but seriously, it's super bizarre how you meet some of these people and develop a bond for absolutely no reason.  But when I was leaving today to get Emma her iPad, I saw him again in the parking garage (after a few days of not).  He gave me a hug and asked me where I'd been!  Then I showed him a photo of my family and his face fell off when he saw I had five kids.  It was hilarious.  (I find it rather amusing when I tell people I have five kids.  Usually they think my baby is my first and only.)  He asked me how I was old enough and then looked me up and down wondering how I'd had so many.  It was so funny.  Then I told him to smile because I was going to take a photo of him and post it online.  He is an ex-marine and ex-firefighter.  We'll probably be having lunch one of these days.  


When I came back, they had just given Emma some Tylenol.  We were trying to do it this time with no Benadryl  (since she reacts to that).  Then we got the blood and they hooked it up.

She's pretty sick of not having enough blood.  I thought this photo captured her view on it pretty well!

Emma seems to feel lower back pain each time she gets a transfusion.  It makes it difficult for her to sit.  I don't understand it or why she feels the way she does. She'll still sit a lot, but she has times where she seems to have to stand.

Transfusions can feel like ENDLESS waiting.



She has bits where she'll start whimpering and crying a little.  It doesn't seem like it's related just to the long waiting...more like she feel ancy or uncomfortable somehow from it.  Luckily we do have a TV in the room and she does have her iPad.  My iPad and iPhone were both on the brink of death.  So, I was limited in what I could do.

I was trying to help her feel a little bit better, so we had a little photoshoot.  (I posted this on FB and then when I was saving it to my iPad to post here, I accidentally deleted it off FB - not annoying at all!)


An EMPTY BAG!!!  It still seemed to take 30 minutes for the remaining blood to run through (not sure it really took that long, but it seemed like it was never ending).

So...our play date was at 10am over by 11am.  Soon after came the blood results that showed she needed a transfusion.  Then it was around 1-2 that we got the IV and blood started, and by 6pm we were finally leaving.

Here she is in the elevator on our way to the parking garage.  She wouldn't stop applying pressure to the IV site because she was worried she wouldn't stop bleeding.  She did that once where she bled and made a pretty big mess.  She's been very careful since then.  And, with her platelets down to 14, who can blame her?!!  They won't transfuse platelets until lower than 10 or unless she is bleeding.

Because her immune system is so low, she always wears a mask now when we are in any public place.  

A few more pictures....these are from yesterday.




And, since we've left, TS, my 6 yr old boy, he won't talk to me on FaceTime very much.  He hasn't outright been rude or anything, but he is definitely coping by avoiding the situation.  Yesterday I finally pinned him down and talked to him.  At first he kept dropping the iPad and made it very clear he wasn't interested.  But once Ty finally got him on and I talked to him, he was in tears within just a few minutes, asking me to come back home.  He didn't want me to be gone anymore and he wanted me home again.  He cried quite a bit.  

It broke my heart, but it also felt so good to get to talk to him.  We talked about why I was gone and how much I missed him too.  I told him how much I miss wiping my clean, wet hands on his face.  He thought that was funny.  We spent a lot of time just goofing off over FaceTime, but there were 2-3 times that he would start crying and asking me to come back.  (not the best photo, but it's the only one I took).



Violet talks to me the most.  She will call me and tell me that she misses me and wants me home.  She'll cry regularly about it too.  When she goes to sleep some nights (all nights?) she'll hug the rabbit I gave her.  She'll hug it over and over to hear my recording on it.  But a lot of the time our talks are just fun talks about nothing really...just enjoying being "together".



Then Rhys, when I talk to her, often she is a little angry seeming at first.  She won't talk to me.  Then when she does, she will ask me why I went bye bye.  She wants me back home.  But if I can get her to talk to me, she'll warm up after a while.  It feels so good to see her.  I miss her perma-wedgy.  She always has one since she potty trained.  hehe.  

Sometimes she'll go in my room (like after a nap) and will sit on the floor crying, calling for me.  She struggles a bit having momma gone.



I HATE THIS PART OF IT ALL.

The separation is so hard.  They are so little, and I don't think mommy is replaceable.  I hate that this hurts them at all.  I would really like to have Rhys for sure come up and stay once Emma is no longer in-patient and no longer at the day hospital several times a week.  I'd love for Violet and Tyler to come up too.  But I"m not sure how that will all work.  We'll have to see.  I just don't think we can stand such a long separation, and if we don't have to be separated, I don't want to be.  

I know in the long run they'll survive it, and so will I.  I just don't like the time apart AT ALL.

What I'm saying is...this part more than sucks.  It's awful.  I hate it.  There's such a heartache being so far away from them.  And not just them.  I miss Tyler so much too.




We send videos to each other too, or just photos randomly.  Violet and the girl cousins are pretty good at doing the videos/photos.  It's fun.  Here are a couple I"ve sent to them:



While I might sound all gloomy about it, our FaceTime chats are mostly funny and trying to be positive.  

I'm trying to treasure this time at the same time, though.  This is a very unique experience to go through a bone marrow transplant and live at the Ronald McDonald House.  I hope to never go through it again...but want to appreciate the specialness of it while we are going through it.  

Okay, time for bed.  I'll try to work on a loooooong post (or several, not sure) to update on the past days.

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