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.

Day one rejection?

Huh what?! But but but, huh? I mean really??   Ugh. They have started her on the give scary IV steroids today, tonight all the because you do this you need them also. Anti fungal, anti-acid etc.    Her belly was super bloated again, KUB (xray) is fine. Echo looks great, prograff is finally back to normal! Wahoo. Then her jugular.. The big vains in you neck is boldging (is that a word) three others came to see since they weren't sure what it even ment. You can see her pulse on her neck a little to clearly...  

Rejection 101 (correct me if I'm wrong other heart mommas)
First tell there's rejection going on is your jugular is pulsing..  Others are cbm (blood)   echo, and the only for sure and to tell what kind and how bad is a heart cath.

She will get a un expected heart cath tomorrow she is 2nd case. (will be three surprise your in rejection kids too.)

Keep her in your prayers, well all of us. It's so easy to go crazy here. Its best game of hurry and wait. 

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New meds to the list...

Mariska's electrolytes are off. She gets to take horse pill potassium and a magnesium pill. 

Take two went better the the first time. Quick desolving pills are weird. Wrap em up in bread. Blah.

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More school days missed.

Breaks my heart. Mariska is so sad she's missing another day of school.    She's still having a hard time. Took her to PCMC again today for another blood test to check her medication levels.

Friday they came down a little. From 17 to 10. Not her target range of 5-8. Still pretty high but not in danger of hurting other organs.

The health department doesnt want her in school until her diarrhea stops.  Feels like she has been sick forever. 3 weeks is such a long time.
The doctors and transplant said she can go back when she's ready. Along as she is good about hand washing.  I tried to talk her into it today. but she looked a little green. :( she looks so frail, her sholder bones are still sticking out. Gain weight sweet heart.   She's been a good trooper but is ready to feel better and go back to school.

Her school has been great and worries about her. They ask all the time if there's something they can do.. I really cant think of anything, other then homework.

Highlight of going to the hospital is looking for booboo the contraction bear. He's always hanging out of the new out patient hospital.   Grandma and I are ready for the contraction to be finished.