Looking a little pale.

Lets start off with Mariska's pnenmatosis is looking about the same... so that most likely means 5 more days of being NPO ( NO Food for you!) I've told Mariska the kitchen is broken and they cant cook. She seems to be ok with that response. At least for a little while. She hasnt said she hungry Thanks to the lunch in an IV and dont for get the fats. ;) She wanted a cupcake yesterday morning, durning her treatment she wanted Cheese. So just something to munch on.

Her ECHO looked the same also, a happy place to be right now.

Mariska and I had a pretty rocky night last night. went to bed late, 3am for me about 11 for her. Couldnt get her lines to stop kinking. Making all of the alarms scream at us. Atleast to did get to go back to sleep after 7am blood draws. x-rays, vitals, and more xrays. Shes doing pretty well happy playing, not being the huge tease like normal but I'll take it!

They are thinking about pulling her catheter line, forgot its name. We'll find out after we get labs back at 2. So we might get lucky and not have to do plasmapheresis anymore!. That line has given us so much trouble its crazy. If your giving meds threw it you almost have to hold it the whole time, if she moves the wrong way bends her arm to long the alarms go off. We're crossing our fingers we can get that puppy out.

Shes back on almost all IV meds... feels like 1 step forward 6 steps back. Guess that what little bumps mean. bleh I'm done with them.

Her red blood cell, Hematocrit, is really low.. not shocking, We waste 10ccs of blood then pull what they need for labs, a few times a day. Not forgetting the blood she lost while on the plasmapheresis. Later today they will give her so more blood. Ready for her not to be so pale any more. Funny I've never seen her this shade kind of fun. Used to be more blueish.

She just had a sponge bath and is teasing with the nurse sticking out there tongue out. haha theres my baby.

What day is it? how long has it been?

Oh thats right.. 19 days at PCMC. phew days are all blurred together now! Mariska perked up a little last night. Sams parents came to visit think she really needed her goofy grandpa to play and make her smile! She's been in a pretty good mood all day. Gets mad when I leave, but she'll live.

Mariska's Echo looked a little better from yesterday, Yay forgot if I"ve said that, but its worth repeating over. Her x-rays looked about the same today, we'll do another around 6-8 to check again.

Her plasma freeze today went a lot better. Theres a kink in her catheter line.. yeah not awesome. with some pressures it worked fine. Something will have to change with that for next time.

Mariska made biopuddy. Its pretty awesome. paint glue and magic water. really helped me became my lil stress ball. hehe.

My brother graduate's from the air force boot camp tomorrow! We love you Tyler and are so proud.

Thanks for the love and prayers. Misky could still use more post cards or letters.

Bubbles?

Mariska's chest x-ray popped a red flag.. Looks like she has bubbles in between her intestines walls down by her colon.. Not common with heart transplant but seen in immunosuppressant kids. Did a 2nd x-ray of the area. The GI doctor is coming up some time to take a look. She cant eat or drink anything until this is resolved. Hoping we cought it early and that will only be a few days and not something longer.

I'm hoping its just gas, ;) cause shes been very gasses. not cute little tutes there like some guy in the family *not saying names, you all know who you are. hehe* tough her how.

Now her catheter for her plasmapheresis has bubbles too! I mean really?!  The nurse got them all out and all is well. Phew.

Keep us in your prayers. All the news is becoming so frustrating, putting her back onto IV meds at least all the ones that can be given that way. Over all shes doing well.

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.