Echo looks good. Day 4.

Today has been a slower one. The transplant team has clinics on Thursdays so they are super busy.  Mariska's Progaph is still low!! Shes getting .6ml and came in at .44mls   That's a huge increase. Shes getting .7 tonight with labs on Sat and clinic on Tuesday and more labs. Her level was 6.4. Still below where they want us 8-10. Next year she'll have the target of 5-8 but thats two years post transplant. Sill kid. We are all waiting for her levels to jump sky high, but nothin. They keep asking if we filled her meds here, if we get her labs done here. Nothing has really changed other the she got sick a few weeks back.  With a double ear infection. But no big changes.

Shes so done and wants to go home. As do Sam and I. Its hard being in the hospital never being left alone, becomes bothersome. Plan is to be discharged here in a few hours, hoping her meds will be ready for us when its time.

We had her echo just after lunch, They came to say it looks better. Wahoo!!  When her body rejected her heart, which we think since her prograph level was so low, it attacks the heart valves. Her tricuspid went from mild to moderate.

We're looking at being on steroids for a month, with a fast taper off from them. That's what we're praying happens.  Mariska has fallen in love with the place called Lagoon. She calls it her adventure rides. Hoping she gets to go a few more times before the summer is over. Who would have thought the kid who is scared at the play ground loves theme park rides.  She is very excited about her little sister who is coming. Only 9 more weeks! We're super excited.

Thanks for all the prayers!

Post 200, Oy! And an update.

Just when I thought everyone wouldn't remember us, They are proving me wrong.   morning snack lady remembers us, The cleaning lady remembers. Cindy from parents resource remembers us. 3 nurses have stopped us to chat. Oh and cant forget our buddies with the IV team. Made a new friend. The garden lady, she let Mariska help water the flowers and borrow some sunscreen. =)


Mariska's Prograph is super low, STILL. They want her to be 8-10, Shes been around 6 for a few weeks. Last few times she was 4.5, 5.3, 5.6. Just slowly going up. Thursday we changed her dose from .45 to .5 Her level only went up .2!   Few months ago if we moved it more then .01 She would go super high. Now we cant get her with in range.   She'll be on .6 tonight. That's the highest. Shes also put on some weight. Over 31lbs now. The steroids have started to take effect, for the first two days she was a starving child who ate everything, was eating more then me. Last night shes starting to get the "round face" her meds make her a little chunky and makes her cheeks huge.

She tested positive for Herpies from the labs with her biopsy. *aka cold sores* Guess it showed as active and not something that has just been around in her body. So the test is to find out if it is an issue. At least that's what I think. Asked what the risks are, was told it can effect the liver and eyes, but if it was she would already be showing it. I'm praying it wont be a problem, more so since I think if it is she has to be on the vain eater meds to fight it. ugh.

Doctor E. just came in, Said we're still on target to go home tomorrow. She'll need an echo labs and her last dose of iv steriods.   I need to find a time that works better for her on meds. With out risking if she wants to sleep in it doesnt cause troubles. I havent been so good at getting her to take them or giving them right at 12 hours apart. Something we will fix.

Gave her a new IV today. Got it on the first poke. yay!! only its her right hand so she cant color or eat very well. Made us feed her half her breakfast. Hard to wash hands with in iv too.

Thanks for the prayers and support. <3