Friday, August 10, 2012

Aug 10, Sierra's AMR ...

4:10 pm.
Lindsey is doing great. She has some skin irritation around her abdomen that is driving her CRAZY.  She almost obsesses about it. It is constantly itching. They have given her some medicine but it doesn't really help. They can't use ointments because they will breed bacteria and infection, which we do not want.  They are working on some solution because it is really bringing her down.   Today we went to PT and made some chocolate chip cookies again. She enjoyed that and even ate a big spoon full of cookie dough.  Her blood is as thin as they want it and rounds are really quite boring. She is doing wonderful and excited to start school on Monday.

Sierra on the other hand, has been on the back burner of our minds and worry for awhile. It is time now, to shift some of our attention back to her. She has been fighting for a couple of years something called AMR (Antibody mediated rejection).  This is where you see high levels of antibodies in the blood. AMR also goes along with coronary artery disease which she has had in the past.  The treatment for this is a 12 hour monthly infusion until there are no antibodies left.  Her numbers haven't been high, but they are not going away either. So, she is going to start her infusion at 9 p.m. Tuesday at the day hospital and rest Wednesday so she can start school Thursday. Then the first Wednesday in September they will do her annual biopsy where they look at her coronary arteries. They we will make more decisions after that. It certainly never ends, and now we get to times that by two, possibly more...

Thank you Michelle for taking Gage and Megan yesterday, they had a ball. Liz, thank you for taking Gage today, you ladies are amazing!!

7 comments:

Steph Tidwell said...

Never a Dull Moment when you have kids is it.

Is her rash because her skin is Dry..can you put some lotion on it? I sure hope they figure something out soon

Anonymous said...

It was SO good to talk to you today, thanks for being such an amazing sister in law. We are hoping & praying that the results from sierra's test will look good AND we are glad Linds keeps improving. She is going to be strong going into transplant. Love and Miss You ALL! Aunt G & Uncle Seth

alaskan hobbs family said...

Could you try some calimine sp? lotion? Its not really an ointment, but maybe will help a little? Maybe try putting some Ice on it? I am so glad to see that she is doing well. We still say prayers for her! Hopefully Sierra's test will go well. BTW if you are ever up for it we would love to have you in alaska!!

Anonymous said...

Hello all! Oh so happy to know you're doing so well Lindsey, except for that darn itch. Prayers that will be dealt w/soon. Sierra, you are in our prayers don't forget:) Hoping you all have a great 1st day of school, followed by more:) Gage, you're just too cute & such a trooper. 'Adventures w/Kelly' made me laugh as could relate! Sorry, but glad all ended well. As said before, you are all in our prayers & are loved. <3 to <3 JRee

Andi (RrlScrapGal) said...

Oh my... So happy to hear that Lindsey is getting nice an strong! Her heart must be on it's way.. all conditions are right, right? Prayers for her as always.
And for darling Sierra, hope this week goes well for you! What a beautiful trooper you are. School already? My Goodness!!!!! Hugs to all of you!

Leslie said...

Glad to hear Lindsay is getting stronger. Also sorry she has to deal with an annoying itch on top of everything. I can't believe school is starting on Monday for your kids. Sounds like too short of a summer. We hope all goes well with Sierra too. We still think of and pray for your family often. We sure think the Bingham family is AWESOME.
Have a super night.

Kay Patterson said...

Sierra, I'll be thinking of you on Tuesday. We have a niece that has something done that sounds very similar. She always takes a good book and she says the time goes by pretty fast (I'd probably take a nap). Lindsey, hope the itch is gone by today. Love and prayers, K.