Biopsy results

No rejection! Squeaky clean biopsy.

Huh what?  I've gotten my self mental prepared for the "R" word. Could be a donor specific antibody rejection. That one comes back Monday.    Her pressures are crazy high which explains her jugular veins. We're a little baffled.

They ran a crypto culture... Or ran everything but it. Medical mix up. So another one was needed. Delaying it another day. Once that's clear she might beable to sneak into the play room an hour before it opens.. Maybe. Both of us are ready to be home. Feels like a week has gone in the last 2 days.  

We have discharge meds and papers set for Sunday afternoon so until then its the good ol game of hurry and wait.

Heart pictures

Here's Mariska's "old" heart!  Pathology said they keep all of the hearts (guessing transplant) they did a study on hers something about echos and how they read dense scar tissue. Her left side is tiny about the size of a thumb nail. He old us no one really comes to see their hearts after the year mark.   He has hearts dating back to 64'. Blows my mind. Guess as they get older they become more pink again too. 

Mariska hakf a sleep when they dropped by and wanted nothing to do with it. So I make her take a photo with me. :o)    she hasnt been she self this stay. The meds are making her super tired and she's still a little sour about no play room again.

Her class had a field trip today, breaks my heart but there will be others. She will miss another week of school and might get to go back on the 30. Im on the fence about her going to her class Halloween party. Time will tell. 

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Cath lab

Mariska had her surprise cath today. She went down at 9:40. She's in recovery now.

Dr Day said her pressures are bad.

Will know this evening the results of her biopsy. To tell us what level of rejection.

She's did great. They had access from her neck, and didnt need the groin site.

We have it early. means less damage to her heart.

Keep her in your prayers please.

Home!

Mariska was discharged lafter lunch time.   Since she's not on iv fluids she can do the same recovery there as home.

She shared a lunch with her sister. Made her eat with the fear Kamiah would eat all her lunch. Still got a little sick. Sam and I wonder if its more of a mind game now.

Kamiah and Daddy (Sam) came up today. Was nice seeing them again. Was only a few days but we all missed life together.   Kamiah finished painting a few pixtures and wooden bird. She was in heaven.. Guess we should do more of that at home.  

Mariska's Kindergarten class made a get well poster and all signed their names with out help. Mrs. Bradshaw was very proud of them. She really got lucky to such amazing teacher! One of Mariska's friends told the class Mariska was in the hospital. She didnt want to believe it until she thought back, im sure me asking 3 times a week if misky said any thing about her tummy hurting the week before. She's called us everyday this week to see how she felt.

Her class also gave her a little stuffed cat. We thought we forgot him sleeping at the hospital but found him in the car. Phew all is well now.
Mariska's little friend, the same who told her teacher. Brought over her homework and a little gift. Once Mariska woke up from her 3 hour nap she got busy coloring. It's so nice staying put in one town long enough to build friendships. Was one fear I had about her starting school. Dont let her shyness fool you she is super social.

Mariska ate a little dinner and has drank enough for me to finally feel gokd about coming home.

Cardiology transplant, (really need a shorter name) wants labs Friday and Monday.  Prograff is still super high. Lowest was 13, was 17 again this morning. Guess that will work with the pharmacy only having 6 days of the new med.

Here's a bunch of photos. Best thing about posts from a phone quick photos!

Welcome baby Kamiah!

Mariska is so proud to have a little sister. =) Here's some pictures.

Kamiah Mae Anderson

6 lbs 9 oz

19 inches

 Born at 8:20 am

September 28th 2011



Due date September 22nd. 6 days late planned to be induced at 7:15am on the 28. Told Kamiah it was her last chance to come into the world on her own. Very glad she came own her own. We weren't fully sure the due date was right but all the ulta sounds measured her dead on with the date we thought was right. So happy she came on her own with out drugs and force. She was trying to keep her head lifted off my chest and look around hours after birth and has amazing muscle tone very much so in her legs. Nursing is going well, It was a little rocky but we're working to get over it. We love you little Kamaih so happy to have you in our family.

Here's what 40 weeks looks like. 3 days over due.

Welcome to the world Kamiah.

Tiny feet

Contractions started at 12:30. Finally at 2:30 and 2mins apart we headed for the hospital. Taken at 9am.  Here's what a long night will do to ya. :o)  

Proud daddy and Grandpa.

smashed fresh from the birth canal face. hehe Stayed awake for 2 hours after birth looking around.

First time meeting.

Upset because the nurse took Kamiah from the room to the nursery before we moved to the recovery room. She did not like having her sister taken away.

Mariska loves being a sister.

Little sister shirt we brought her home in. First diaper change at home.

Checking things out.

10-1-2011. 3 days old.  She looks so much like Mariska.

Mariska age 1 day. Before we knew about her half a heart and going to the NICU

6lbs 11oz

Mariska a few days old. Before norwood. Taken at PCMC PICU.

Yesterday Mariska morning I layed down while Kamiah slept to take a nap. Woke up to Kamiah crying and to see Mariska was in the pack-in-play bassinet with a few toys working on laying down with her sister. So cute but a little naughty.

Went to the pediatrician yesterday *48 hours old* since we left the hospital a little early they wanted to see her again. Since she had a little jaundice that was a working its way up. She looks fine. Her oxygen levels are 97 and 99. She a healthy little girl.  Mariska again was so worried they would hurt her. We talked about what would happen to Kamiah when she was born that she would have to get pokes in her legs just like she did as a baby. Mariska said she will hold her sisters hand so she doesn't get scared. 

She blows us away with the amount of compassion she has for others. Always making sure others are happy. Sam Told her his shoulder hurt one day a few days later shes asking him if it feels better now. Most of us don't even remember little things like that, little alone check to make sure things are fine. She's such a sweet heart.

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