Sorry I took so long to update, I have not had time or energy, it has been a long few days.  We came home to a very sick Jade and went to the doctor the day after we got home.  She was tested for strep because her throat was red with white spots, we are still waiting for the results, but the rapid test was negative.  So it may be a virus.  I would rather it be strep, because Brinley is pretty well covered with antibiotics right now, so I can't see it breaking through that!  There is no defense from a virus though, and her ANC is still low, 300, so she would be right back inpatient if she caught it.  We are crossing our fingers....

We are literally giving her IV meds all day.  I finally counted today and realized we are putting something in her PICC line 11 times a day.  It is crazy.  Some take over an hour, so she has to carry around her little medicine ball while she plays.  She is getting tired of it, but has been a good sport so far.  We have had to do two dressing changes on her PICC line since we got home, and it has been really hard for her.  You have to rub alcohol right onto her fresh wounds and it really burns.  She screams and we can barely hold her down.  She calls it her "yuckies" because it still has blood on it.  So whenever we take her dressing off she tells me "see my yuckies mommy!"  or "don't touch my yuckies!"  We also changed the dressing on her chest today from her line.  It was really gross, just a big hole in her chest.  I still can't believe I am able to actually change her dressing and clean her wounds off, I am such a wimp for stuff like that.  I told David tonight that I just can't do it any more.  I can't hold her down and make her hurt.  But guess what?  There is no one else to do it.  Not that I would pass the buck if there was, I know it is better for me to do it than anyone else.  I just wish it didn't have to be done at all.  I want it all to be over.   
Brinley has had diarrhea for 3 days now, so I have to take a sample in to make sure she doesn't have c-diff.  It is an infection that antibiotics can cause.  I finally got a good sample tonight so I'll take it in tomorrow.  Yep, I had to bottle up a sample of her diarrhea.  Grossed out yet??  Guess what we would do to clear it up?  Another antibiotic.  So I am hoping that she will not have it, I don't want to give her another antibiotic.  The antibiotics can cause diarrhea anyways, so it may just be that.  But she is starting to get a rash and I am trying like mad to keep up with it, but with a low ANC they just come so fast.  If it gets much worse she will really be miserable and I don't want her to have to deal with anything else on top of what she's already dealing with.  Her hematocrit is low too, so they may give her a  transfusion depending on what her counts are on Monday when we check again.  Sorry about all the negative news, but hey, it is what it is.  
On the brighter side, we have had a visitor the last couple days that has brightened all of our days!  Aunt Nancy, you have been my lifeline this week! Thanks for all your help!  Here are some pictures from the last week.  

Being silly, boredom will do that to you....

A sick little girl.
After her surgery to remove her line. 
She finally got her big pretzel, that was all she had asked for all day. 
She loved the painting they brought to her.  It got all over!
Coming home.  Dani and Dennis stayed with the girls on Sunday and they made some welcome home cookies for Brinley. Notice the cancer ribbon....that was Taylor's creation.  Cute.
Taylor's sign...
Aunt Nancy and the girls getting into Daddy's shaving cream.
I just love this picture, eating popsicles in the grass.
This is her medicine ball, she is getting used to carrying it around everywhere.  
Okay, so this is the preparation for ONE NIGHT of her meds.  Yes, just one night, from 12:00 to 6:00.  Craziness.  And I thought the chemo hold would give us a break from the meds...ha. 


Stacy said...

Oh my goodness Kristin, how do you remember it all. Seriously you guys rock (in a very sweet and sincere way). That has got to be so hard. I hope the "poop" culture comes back good. And I hope Jade is feeling better. Wow - I just can't even imagine - I am really hoping things get going on the UP side soon. Love you guys lots and pray for you all lots too. And I really am so amazed at how you all hold it together! Hang in there!

Huenu said...

My poor Brin Brin. I'm sad you guys aren't here, but only because we'll miss ya. You are where you should and our thoughts and prayers will be with you. Miss you and love you!

Ashley said...

Abe saw that last picture and yelled "polka-dot bum!" He wears the same ones and I have to say that every time I change his diaper. Brins hair is looking really cute and thick!

Carl and Starla said...

That is a lot of meds to keep track of! I'm sure Brin is such a brave good girl! Your family is so sweet & cute. You guys are still in our prayers.