WBC

What a busy fun week!

The girls had a good Christmas. Kamiah loves her new baby gear, and Mariska is in heaven playing with her doll house.

Merry Christmas! a little late, but with love all the same.





On to an update.   Mariska's white blood count, her Neupogen level especially dropped down to dangerous levels on Mondays labs.   Because of this she now gets Neupogen shots at night. :) I'm glad they are TINY needles. I've still made Sam give them. Before her transplant she needed shots twice a day to thin her blood. So you would think this would be a walk in the park.. not so much. Still dislike needles. HA!

Because it was her neupogen level. (They are the fighters to help keep you healthy) means if she got sick she has nothing to fight off the sickness, sicking to think something simple could kill her.    We stayed home from all the fun family events happening on Christmas eve and day. Wont lie it was so nice not having to run around and just enjoy being together.

Tonight she will have shot #5. The hope was the injections would boost her numbers up back to normal... This hasnt happened.   She was at 200 (lower then this we wont talk about what happens, super low and high brings out the weird nastys)   Her level today was 400.    Improving but still low.    under 500 she needs shots to boost it.

She'll get another 5 day treatment then labs to see what's happening.   Everyone we run into at PCMC are shocked when we keep coming back twice sometimes 3times a week! we are too... we love all the staff but would rather miss them. =D


Keep her in your prayers. She feels healthy and acts pretty normal, its been hard to tell her she's in a scary places and cant do ANYTHING because of the risk of getting sick.


We're doing lots of infinity playing and puzzle making. Wont forget about eating nothing but junk from our loving friends.

Biopsy results

Zero rejection!

She will finally get to come off her bag of meds. Slowly to make sure she stays stable but its in the plans. So happy.  Here's to a new year and healthly year!

12 long hours. Waiting to pick up meds and we'll be on the road.

<3

Cath quick results

Her culinary look beautifully normal!! Im so happy I am about to cry witg this news.   

her pressures are a little high for her but completely normal range.  

later today we will find out if her heart shows rejection.  Crossing fingers its clean.

Her White blood count is a little low, something to be watched.   Her meds being a little to high can do that to her also.  What does it mean if they are low? If she gets sick it will take her longer and more work to get over a sickness.

Waiting to go back into the pacu to see her

Cath day.

Mariska is in the cath lab right now.    Her cath doctors said if her presssures look good they dont nedd to check her culinary arteries. Which would mean no groin site access!   Home sooner today and a eaiser recovery.   Today we left daddy home to work and watch Kamiah. Ha work and watch a 2 year old. We got to take grandma. :)

Thank you to everyone who fasted for our family sunday. It has helped keep us calm and organized.

New plan :)

Fall fun.

Updates. Rejection..

Oh how I hate the words rejection! Today or yesterday was a hard day.  After she got labs her transplant team called and said her tacro level (anti rejection med, one of her two main) was half where it should be. They want her in clinic and maybe a cath also.

What!?  Breath, breath!

Also the test i insisted they take came back positive for the flu parain oh forgor how to spell it. The bad one... She's going to take 10-14 days to recover!. My heart breaks for her. She felt little better yesterday. Only got sick a few times. The day before was bad...

Keep her and all of my family in your prayers.  I'm really not sure what more I can take before needing meds or a padded room! Ha!

Rejection still, biopsy 2

Mariska had cath again November 20th

6am check in time is the worst part, but finding the results that day makes it all worth while. She went to sleep talking to the anesthesiologist  about his dog and what tricks he can do, ha he can tell time. Breakfast time and dinner time. Was the happiest I've ever seen her for a cath.    This one was smooth and she finished early. =) We played noisy games in recovery, until the kiddo next to us stopped crying then read books until she was ready to go down for clinic.

After the IV was pulled TX team told us not to pull it.. bad sign when that happens.


Mariska's heart chamber pressures are still extremely high,  TX said over all some numbers went up others down so they called it the same as the last one. boo hiss. They debated about admitting her again for another round of IV steroids but decided she could just go back up on the dosage at home.  She did go to school for a few days with her big 3m green mask on friday. but then missed all the next week (short week)

Her teacher sent home a bunch of homework and books to read and pass off. She was excited and read them all before we got home. She is starting to LOVE reading. I'm proud of her for her desire to learn.

Her cath showed rejection this time.

C 2.5 V2 ISHLT 1 PAMR 0

Still Cellular rejection. (if we had to pick a rejection to deal with it would be this one)


Last week she had labs. Her Cellcept (anti rejection drug she's always on) Didnt even show up in her blood. Now we're a bit worried. So rised that along with prograff her other main drug. Hoping they have finally become stable.

I looked at photos of her when school started she has changed so much! I love her chunky cheeks but wish it was back to normal again.  I tell her every day I love her cheeks and I wanna squish them. She'll look at me smash them together then pinch them for me. HAHA love her.

She had clinic yesterday Her heart still looks great! but her neck you can still see the vain pulsing telling us her pressures are still scary high.

One the 16th she will have a full cath (the enter in two places, and has to lay flat for 4-6 hours after. They want to check her pulmary arties and make sure they are still doing ok. The worry about those if they become damaged it would mean another transplant sooner then later. SCARY stuff.

Mariska's weight has been intersting. When she got sick her low was 37lbs now she's almost 52lbs!

We had a great Thanksgiving with my parents brother and his girlfriend. It was small and not crazy like most years. There is not a day that goes by where I dont think of Mariska's heart donor and their family. Their gift has let me have so many wonderful mermories with my sweet girl. They are always close to my heart.

Thanks for all your payers, wishes and thoughts. They have helped calm sole and have peace in my heart.

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!

Kindergarten is here!!

Time is flying by so quickly. I love staying home with the girls they keep me on my toes most of the time but being busy is fun.


Mariska started Kindergarten today!! I never dared to look this far into her future when she was younger. Mariska you have become such a sweet obedient loving little girl who loves to play with everyone. You are a very thoughtful person always thinking of others and how you can help. I love your sweetness you bring to our home.  I call you my serious kid because you take a little longer to warm and open up to others. Your sister loves everything about you, the best parts of my day are watching the two of you play. Kamiah copies everything you say wear and do. We love you!


Your favorite color is PINK

Your favorite movie is Tangled and The little Mermaid

Favorite number is 9

I want to be a Chef when you grow up

Favorite food is Pizza

Favorite dessert is raspberry pizza

Favorite Candy sixleties

Favorite things I did this summer. Played with friends, Lagoon, Cherry Hill, Camping, Playing with Cousins, Swimming at grandma and Grandpa B's pool and learned to swim, Sidewalk Chalk,

Favorite Song is "Welcome to school" from preschool

Favorite toy Ariel and carebear elephant

Favorite book Princess collection comic book.

Favorite game Wii Birthday Bash, Mario Party 9. ABC Mouse.

    After Breakfast munchies (Mariska made a snack, Diced up peaches with chocolate sprinkles or sparkles as she calls them.)

 Clothing all picked out for Mariska's first day of KINDERGARTEN

 Pictures Pictures and MORE pictures. She's cute so I posted a ton. :o)

 Learning time.

 Making Name tag necklaces for the first solo day on the 2nd.

 She has a locker! I'm socked. She's a little too short for the top row. But hat didn't stop us from trying to open it!

 Decided to share a locker with a friend. Have a friend from Church in class too!

 Mariska and Mrs Bradshaw