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.

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!

Eat kiddo eat.

Mariska is wanting to eat food a little more so far. 

Last night she ate some jerky kept about half in.

Samething with her eggs this morning. Little bacon and half a cup. Of fruit.

Hoping she does well and we can go home today. Waiting for the doctors now.

Our view.

We got a room wotg a view. Its the little things i tell ya. Better then the ac amd heater units or parking garage.   I dont think it matters much to misky but it makes me feel better while in one of the smaller and showerless rooms.   Cant decide if the new building is a eye sore or adds to the view. Fun to watch them build it, but fireworks wont be the same here now.

Good thing for the RMH.  Got to say hi to Cindy. Haha love that lady, she's mades me smile.

Mariskas takes her pills laying down with out water. Shocks all who watch her do it. That's my girl. Always a surprise.

Results are in

Ugh had this post almost done took a break and it's gone. Here we go again.

A positive culture came back positive for  .....Cryptosporidium...

Remember it from a few years back? Its the one that closed down All swimming pools in Utah only to reopen after they installed a miro filter. yeah the one caused by kids swimming with diarrhea.

Normal healthy humans need no treatment for this, just a diarrhea for a day or two and your better. Mariska is maybe the only 2nd heart transplant kid to even get it! She's so lucky or unlucky.  Its another bug not killed by hand sanitizer. Warm soapy water is the best bet.

You can pick this up from a bad water source, lakes, or swimming pools normally.

We had a blast this summer with season passes to lagoon. Which is where i think she got it. Over a month ago. We also went to a hot spring in Idaho and to cherry hill not to rule them out. But lagoona beach.was the only one not to enforce swim diapers and diaper cover.

We are amitted to the 2nd floor. J pod room 58. She has a pretty nice view. Im looking forward to tonight.

We met with 6? Doctors maybe more so many nurses and techs.  Most were med students asking for history along with other questions.
Talked with a doctor with the CDC. They are working on prevention, she informed me of what meds and time frame.  I might even get a call from the Department of healthy. Ha kind of nerves for that one.

She gets to start an anti parasitic drug tonight. For 2 weeks twice a day. Normal unlucky people get it for 3 days. Darn precautions i tell ya. If at two weeks she's not negitive she will take it for 2 weeks.
The drug she'll get itsnt asorbed well into the body so its only bothering its taget.   After watching the Monster Inside of Me on TLC a few weeks ago we wondered . Yuck!

Good news. We can go home once she can keep her self hydrated. Tomorrow is the hopeful plan. She's still only eating a handfull of bites. So tomorrow might be pushing it.

Hardest part was hearing she will be banned from the play room. Broke.the girls heart! maybe someday she'll get to play there.   The new changes here are wonderful! Especially the Ronald McDonald house. Wow! So calming.

Keep the prayers coming and for some of our heart friends at the hospital with us.

Kyies mom Chrissie and her youngest son came and visited for a while. It was so good to visit ad recharge batteries. We miss them and think of that spunky girl all the time.

I think.. Not

Mariska's team came by. They talked about sending he home and having us call Thursday with a check in.    Also to stop cellcept.

That changed when she got sick after they got here. She can't say in RTU (rapid treatment unit ) longer then 23 hours. They asked me what I think.   Since she's still in a lot of pain and cant keep anything in. I feel shes better off here to stay hydrated.   I had also planned to stay until Wednesday. They laughed. Looks like we earned a room on the floor.   Just waiting for a few discharges.  

Mariska had a tricky blood draw but finally got it working. She was doing ok this morning.   About 30 mins after her meds and the anti nausea she went really white for about am hour until she got sick again. Blah. She needs to feel better. She has been so sick for 2weeks tomorrow.

Thanks for the prayers. Its helped us deal with life here and is keeping her brave.

Sweet dreams?

Glad the phlebotomist woke me before Mariska.   Guess they want more blood then 3mils this morning.
    IV Team is getting to reknow us pretty fast.        Forgot this place wakes you up more then a new born babe.   Im sure blood shot eyes are just the welcoming party to life. Forgot what the every 4 hour vitals are like.    I should have something smart to say after rounds. For now its ramblings of a sleep mother. 

TMI alart here.   The nurse said Mariska's bathroom runs smell like a viral infection. Which is loads better then a bacterial.  

She was able to keep her pancake dinner down. Wahoo for agreeable foods.

Am I mean for convincing mariska that eating sugar makes her sick. Ha. When she doesnt feel well she wont eat anything overly sweet. She's so strong and full of wisdom. I've always told her she was born with an old sprit.  I know she forgets to be a kid. Good thing Kamiah makes her laugh.

Kamiah can't visit for a while, she thinks it's funny to make gagging/throwing up sounds! She's a gem for it.  So hard not to laugh!!

Sam is staying home with Kamiah tomorrow. Guess his new job has more free time then planned.

Hey! Sam got a promotion.  :o)  he now does what I call the programming grunt work. Hehe finally a step into the right field. Way to go babe.  

Sick belly aching little girl

Keep Mariska in your prayers. She has been really sick.
She has had diarrhea for 12 days, started throwing up 6 days ago. She has lost a good 7lbs.

We're at the hospital now trying to get her dehydrated and her medication levels back under control.  Her prograff was 17 should be 5-8.  Her cellcept was .5 should be 2-4.  Cellcept can have all of the side effects she has show.

Shes getting maintance fluids for the last 2 hours and 30mins before that.

Her heart looked and sounded great.

Her white blood count doubled over the weekend. So did the labs effected by diarrhea and lack of eating.

So far looks like it's not rejection but just a really bad GI bug. 

Kind of excited to make a post from my phone!