cellular

The test show its still cellular rejection! and not her antibodies. Putting her back on heavy steroids to help get the numbers back down. She'll have another cath monday, an echo tomorrow to see if it helps. Her plasmapheresis or "plasma freezes" as we call it. some time tonight, should have been at 3:30 and its now after 6, Guess they have had a busy day.

Her test results only half came back so Dr. E had to get on the labs case on why didnt they do the full  pannel. Its done now.

Our nurse Tara last day is today. after almost 30 years with PCMC! Way to go! we'll miss her shes been fun to play with all day.

Now we just wait for a few days before anything happens. Thanks for the prayers. We're in 2507 if anyone wants to swing by and say hello.

Hello PICU--CICU

Today was biopsy number 2. Had a great night last night, pushing 7 hours of no one coming to bug us sleeping. =D Last night they put something in her PICC line and let it sit hoping to get it to work better for blood draws, So far I think it worked.. . NPO, no food before her cath. *thats normal ;)* didn't feel like we starved her this time. since it was over the night where she couldn't eat. Off to the cath lab...

After the cath was over we went down to talk with the doctor who preformed her cath. As we waited Dr. Everitt and the team walked by, hard when you hear them saying oh shoot. Then saw us, whoops. Oddly good to know they think its crappy too and not just something normal.. Dr. E talked to us and reviewed her cath results. She said it looks worst then the last two. Her pressures are high. Was 12 on the last one and now 25. Huge change and now her tricuspis valve is not working right also...

They put in a catheter port on her left upper breast area and then moved us back down stairs to the Picu.

Now they are going to put her on Plasmapheresis. Its a lot like dialysis, using the same equipment. It will pull out her plasma and put in new plasma to hopefully pull out the antibodies that are attacking the heart.

The Plasmapheresis will last for about an hour. Once a day. Maybe every day or every other day depending on how her blood labs look.

I'll call this more then a speed bump, but at least we are able to treat it sooner then letting her body reject the heart. Keep us in your prayers. I know Heavenly Father is watching and comforting her, I can feel the prayers sent for our family and the support is a wonderful feeling.

Just another sunday..

Mariska is doing well. The chest tube site is healing up wonderfully, Her echo showed her valve working better, Just a little fluid to get rid off her heart.

She'll have a cath tomorrow, shes first case. for Biopsy # 2  Pray for Zero rejection

The 3k a pop IVIG drug look like it did its job. =) We'll really know if it did tomorrow.

Misky's PICC line is still having trouble. Had to flush it 6 times to get any blood return... The plan is to get it out while she's in the cath lab. Dr. E doesn't think the convenes of it is worth the risk of infection, no do we.

Her nurse is Matt again. He has nicked named her CoCo. so funny. he'll call her coco she'll say no I'm not coco yOUR coco. Sillies. =)

Wagon rides.

eating her 2nd dinner that night. Yummy pizza.

working out while playing bingo

Lunch time with daddy.

Crazy water free shampoo, that stuff is Awesome. ;) going into the camping bag. hehe

Playing with grandma and pa Anderson.

Chucky cheeks.

Going to her ECHO. Check out the tiny wheelchair, She wasnt sure about riding by her self.

Making a hospital buddy. Playing doctor, putting bandaids, giving meds, and doing an IV. Think it helped her a little =)

Cabby her dolly has bandiads on her face.

her food gets cut up to TEENY tiny Little pieces.

Washing her hair with water.

Playing in the kid zone. They opened it before anyone else could come, and cleaned it the night before so it was nice and clean. Fun to get out of the room.

borrowing toys from the play room.

Cuddling with daddy this morning.

Wagon ride with all her buddies.

Update

So Mariska went in for an Echo today and Dr Everitt said she is very pleased with everything and the Mitral valve isnt leaking anymore and there is only a little fluid around the heart..

Yay Misky.. Hopefully this means we get to go home soon.

Rejection

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

Biospy Results

Dr. Everitt Called us last night and told us that the heart is only having a mild acute rejection which is a good sign. She just needs to be on an I.V. dosage of steroids for a few days and they set a goal to have mariska go home on Friday.  Yeah...  So hopefully all will go well and we can leave soon..