Thursday, July 29, 2010


So here I was thinking oh today will be easy *no pokes or crappy news* This morning they went to pull blood from Mariska's PICC line *yeah the one in her arm to her heart* they flushed the line then went to draw the blood got the waste blood changed tubes and then nothing, couldnt get anything from her line, grr so we flushed it again the nurse said maybe they will be ok with just using the "waste blood" looks like its been ok so far. The nurse said it might just be a flap at the bottem opens when you push something in but closes when you go to pull.. kind of like a one way door?.. we waited a while she came back a while later and it works fine now. Phew!

During the while I talked about above, Misky went down for an echo. The nurse asked if she wanted to ride in a wheelchair or in the wagon, she picked the wheelchair. She found a peds one. That was SO stinking small and cute. Think Misk was sad she didnt get to ride with me like before. But soon got over it.

Her echo was pretty fast about 15mins. Then we came back up to the room. Childlife popped in and Asked if we still wanted some tips to get misky to take her meds better. She'll come back later today, and make a hospital buddy doll with Misky =).

Emily one of the transplant cords. Called and wanted to come up and go over some discharge training with me and to set up a time. Ended up having Misky's echo fall into the middle of it so pushed it back to 2.

Then She came up to drop some news... ready? cause I'm still not. Maybe its not to bad and its just the straw that crushed the camels back.

She said Dr. E and another Doctor looked at Mariska's echo dont think its better or really worst. Which means the nasty immunosppressive steroids arent taking care of her Miral valve.. And that they are going to start her on a a new antibodies rejection ivig drug. She also said they know the donors antibodies now and can treat with the IVIG drug.

The IVIG drug is a very slow iv med with a lot of allergic reactions so they have to give her Tylenol and benadryl to prevent it from flaring up. And that we're not going home tomorrow.... looks like after Monday or Tuesday.. They want to do another biopsy to see if this drug helps her heart or not.

If you still wanted to send a card might as well. We could use the good vibes our way. They can mail them to our house if she's home when they come. 

Thanks to all of you who have sent a card or comment =) nice to know others are following our story and for all the prayers.   I'll try and post some pictures later. The steroids have made misky's cheeks look huge. thought she was just putting food into her mouth keep it like a chipmunk. HAHA Love those cheeks. <3


The Simmons Family said...

We continue to pray. I'm sorry that you don't get to go home yet, but this is just a little bump in the road. Owen has had IVIG and will have it ongoing after he is listed and post-transplant. His antibodies are highly sensitized going into transplant. What I'm getting at is that IVIG is common and nothing to be scared of. Just annoying. :)

Can't wait to see Misky's chipmunk cheeks... I think it's adorable when they get the steroid face.

We're praying that the IVIG works out.

Jones said...

it is hard to get all excited to go and then be told you can't leave. We are thankful the dr's are on top of everything and we are still praying for your family.

Summer said...

Wow! Congrats on M's new heart!!! It was so good to see you last night! Sorry to hear you have to stay......but I do understand! Mason was going to be discharged 12 days post tx, but then he had a 3r rejection and we stayed until 6 1/2 weeks post tx :( I'm praying you will get out much sooner! At least M's rejection seems much much less severe than Mason's was! Can't wait to see those chubby cheeks. Then our two kiddos can be chubby partners!!!!

Love Mason and Mommy