Thursday, July 21, 2011

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!

Wednesday, July 20, 2011

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

Monday, July 18, 2011

Rejection.. One year ago to the date Mariska was given the gift of her new heart

Dont want it to be true, would do anything for it not to be so.. Mariska little body is rejecting her heart. The good thing about rejection is its treatable. Shes back on steriods again a long with a handfull of meds that come with it. Good bye just two meds and hello 8?   

She is in Cellular rejection level 4. With level 5 being the highest. Scary thing, this could have gone unnoticed for a while. Her body hasnt shown any signs of being affected.  Counting our blessings we are able to get on top of this early and prevent any damage to her heart.

The Test they ran this time showed 130 rejection. For most people rejection happens at about 100. Last year when she rejected she was 2,500. Not fully sure what it means, just know its the way the body shows its being attacked.

Mariska did awesome today. Only in the Cath lab for an hour and half. Was scared in the recovery room but was calmed when she saw Sam or my self. Understood she had to lay flat for 4 hours! like I said shes amazing.  They had two failed ivs one in each hand in the cath lab *iv didnt hit a vain or wasnt able to find one* We pulled her iv in her foot before we knew we had to stay. Then another failed on in her hand Finally found a vain in her left hand for her new IV steriods.

The game plan is to give her 6 treatments of mycofentale sp * just to sleepy to care* her iv steriod. They are every 12 hours so we should beable to go home thursday afternoon. 

The effects are already showing. She is STARVING. I can understand now why parents of teens with transplants have to lock the fridge. Nothing is able to fill that hunger. Poor kid. Guess I'll make sure she gets lots and lots of vegies in, haha. 

Thanks for the prayers. We find out if this treatment works in 1-2 weeks with another cath. Praying it stops it and we can start to get off meds again.

Cath lab

I'll do a longer post later. Wanted to post Mariska goes to the Cath lab today for her first annual biopsy! Hard to believe last time last year what our lives looked like. Please keep her in your prayers that everything runs smoothly.
July 16th, First event with HopeKids

One year ago today!

Watching the door we'll use countless times the next year

Who doesnt love a good cut??... Yep it happened, She cut her own hair, atleast it worked out to be a bob. Other then the very very very short patch in the back. haha.    Could have been worst, at her age I gave my self a mullet.. yep inch high from the ears forward. I was So in style.   Feeling blessed Mariska didnt go that far.
What you cant see? the good 7 month baby bump. Mariska is gonna have a little sister in september!  All looks healthy but I'll believe it when shes a month old in my arms still. Oh thank heavens for little girls. <3