Thursday, August 25, 2011

Blogs? lost??! say it isnt so..

When we lost the domain name to Mariska's site.. * made it .com over the* guess someone bought it? Weird. When I changed it back to blogspot so everyone could view the site again. All our blog buddies links are gone! Everyone! I'm sad. If you follow us mind dropping a comment with your site. Family, friends, heart buddies.

=) I'm gonna start over! if you think I should be following someone drop me a link to theirs too, It would be most helpful.

Thanks a Ton!

Heart is lookin' good!

Went to clinic today. Have to say getting there for 7am echo, 8:30-9 labs. Then 10 for clinic made for a super long day. Atleast we had time to grab breakfast. Heres what she had to eat... Ate my moms pancake, half of her grits *think its in a two cup bowl* Half her donut, a few grapes, two strawberries, and 1/3 a bottle of juice. Good thing we all dont eat like that every morning! We got to see our little friend Kylie and her mom. Mariska and her we're so cute sitting there visiting and playing.

Mariska's echo looked good, back to normal. =D! We have been praying and praying it would. Summer is no fun if you can go and do anything. boo hoo hoo. Its been a hard week on me, Think all the stress and with the baby coming in 4 weeks. or 29 days. hehe Is finally getting to me.

We even have the paper for the tapering off her steroids!! Still stuck in a Go-no-where, see-no-one status. But freedom is in the clearing up ahead. I can amost taste it.

Next werek she goes back for clinic to make sure things are hunky dory. The on the 8th or around it she will need another cath. To check and make sure the rejection is gone.

This dose of meds for her has been making us crazy! Shes always been really happy... ok if you have seen her she bounces off the walls and wants nothing but to talk and talk or make you laugh. No breaks. Its fun for a while.. but burns out pretty fast. Shes been pretty moody for the past week. The Dont look at me, just do what I say and even if I dont say it make sure you do it right. Grumpy but still super silly.

Heres a recap of last night...

Mariska didnt want to eat much of her dinner. So we saw this one coming.

Mariska asking dad if she can have something to eat, so they are looking in the freezer and fridge. Sam Looks at me and asks she she can have a hot pocket.

Me "no"
Mariska " i"m still hungry.. can I have one of those" *hotpocket* Working on her crying face..
me " no, those are for lunches "
Mariska while grabbing her chest/neck.. working on tiers "but my heart is getting sick", falling to the ground, I really need one of those."
Me "you can have apple sauce or carrots"
Mariska "NOo its getting sicker! I have to have one...
Me giving her a look that still says I dont think so
Mariska "I cant eat"
me " Then you cant have one of those if you cant eat can you?..
Sam holds up a block of cheese
Me "How about some cheese?"
Mariska getting up from laying on the floor.. "mmmm ok, dad will you cut me some?
like magic no more crying or gator tears flowing.
Shes SO much drama then normal, cant wait until shes off the steroids. Shes such a turkey!

Tuesday, August 16, 2011

Rejection still going on...

Mariska had a Heart cath yesterday morning to find out if her little body is still rejecting her heart. She was first case, makes it easy on keeping her tummy empty but not so easy to get out of the house at 5. Yesterday feels like a blur, Sam and I both didnt sleep well between the stress and the scary lighting storm.

  Mariska was scared the night before. We talked with her for over an hour listening to her fears and giving her comfort. Her biggest worry was mommy why did they take off my panties!  *last time they entered the leg artery and the neck* Poor kid, At only 3 she is so modest.

We took her down to the cath lab, she cried but still went to the nurse. When we went down to talk to the doctor the nurse said she was super brave. Asked for a tissue wiped her nose, layed down covered her eyes and said she was ready. Moments like those break my heart to see her having to be brave. She didn't have any trouble waking up, she was up drinking water and juice ready to get out of there. And very happy they left her pants on. They tell us it will get easier.. I'm sure with time it will.

We found out her chamber pressures inside her heart are higher then her last cath, but still with in the normal range. *numbers went up by 4 in almost all 4 chambers* They did an echo while she was there also. Her echo also shows her valve is a little worst.. but also still in the normal range. Little changes like those pretty much mean rejection.

We went down stairs to talk to the transplant team and find out what Dr. E had to say.  Mariska's prograf level was low again! after being stable for 2 weeks. They bumped up her meds again. .9mls x twice a day. Hard to think less then two months ago she was on .4mls . blows my mind. We needed to wait for the biopsy to come back to find out if it was indeed rejection still.  I didnt want to ask, but finally did. What is the next step to treat her rejection. Praying it wasn't going to be head to the CICU for plasmapheresis or ivig. The first one still gives me chills and nightmares, Its a beast to put it lightly.  Told her if it was that I was going to break down right then and there. She said no, and if she needed it she'd be crying also. They said the changes came when she hit the half way mark on the tapper off her steroids, so it would be likely to go back there and hold.

They called a few hours after we got home. Home what a wonderful word. Said she was still in rejection, forgot if it was mild or moderate -forgot which it was a very long day. Said to bump her pedisone up to 1.6mls twice a day.

She has been putting on a lot of weight. checked in at the hospital at 15.5kgs. two months ago she was 13.2kgs. Shes our little fluffy marshmallow. To think 7 months ago you could see almost every bone in her body. Sure has come a long way.

Now we sit and wait praying the rejection goes away. Its hard not to miss doing normal things, going places like the store as a family, swimming, or church. It is draining, thinking about should we go to the park.. will there be someone sick? will she pick up something? Sometimes its easier to just stay away.
She has talked about going to Disney Land once a day for a good month, and is getting excited to go next year! She also cant wait to be a big sister. 5 more weeks and shes not the only child anymore.