2015 to June 2016!

I decided to try blogger on my phone... and it was a big fail, so sad!   We've lost 3 or 4 great *I'm gonna do this blogging stuff again* posts!

SO in a nutshell before I forget again and anymore things happen I'll give you the super fast update!

Mariska's update. She goes to clinic every 3 months, her heart is looking wonderful, she has gotten to come down on meds. Her new goal range for tacro ( immunosuppressant med) is 5-8!   Her echo from last month looked good.   Also she's far enough post transplant that she only needs a heart cath biopsy every other year, unless needed. so NO CATH this year!!
  Mariska is 8!  She decided she wanted to be baptized as a member of the Church of Jesus Christ of Later-Day Saints.  Her daddy was able to go into the font with her. It was a wonderful day, filled with the spirit, surrounded by family and friends.   Mariska Just finished the 2nd Grade. She was given the award works well with everyone, at the end of the year.   She's looking forward to a fun filled summer with swimming and playing with friends. 

Kamiah now 4! is a little social butterfly, she lives outside and is very self entertained, and like her sister an independent spirit.   I love her smile, her silly blinks, and that curly golden hair. She's forever our little Goldy locks.

Baby #3 Did I tell you we were expecting?!  No? She's now 10months old tomorrow, how can that be? I just had her.

Winnrey our newest little Girl brought a sweet spirit into our home and hearts.  She is adored by her sisters. Winnrey loves to smile, army crawl, nurse and eat anything she can get her hands on.  She is such a content happy baby.   We found out she also has a small heart defect. VSD its a small hole between her two lower pumping chambers. No planned treatment for hers, if it gives her trouble later in life they can patch it, but so far no one has been able to hear it when checking her heart.


Sam and I are slowly becoming more wise and better parents. Sam Goes Bow hunting, flyfishing, backpacking or rifle hunting when ever he gets the chance, Hes love for the outdoors is one of the reasons I love him!   Sam was layed off last year, (march 31.. so his first day out of work was april fools day.. not a good joke! couldnt even tell anyone until the 2nd, since my family is a big bunch of jokers!)    Finding the right replacement has been a challenge, but we're blessed the market is opened up and he was able to find work quickly.
 Sam's working on learning the ropes with Forex, so hopefully he'll become a full day trader. 

Melynda  I'm working on keeping busy with the house and kids. I do a little photography and play around with my cameo, its been fun making things for the house, gifts or cards for friends. Live's going well for us. 

Biopsy results

ZERO rejection.  Such a wonderful thing to hear!

Still some small labs spending but the biggie is back.  Looks like we can keep our summer plans. 

Thanks everyone for the prayers and kind words on facebook.  Helps keep our spirits up knowing others care.

Annual cath

Mariska just had her annual cath this morning. She was super brave even a little excited. She likes to ask if they have any stuffed animals or blankets (she likes to feel spoiled when she leaves. Thanks to everyone who does donations!

She did well in surgery and Is recovering nicely. Her throat hurts a little, totally normal. She picked banana as her mask smell. Said she wouldn't do it again.  What's your kids favorite.   Her Pressures (13) are up from the last cath (9), but lower then the one before(18). Little on the high but normal side.

Should hear back from pathology later today what her biopsy sample shows.

She can leave at 4:30 has to stay flat for 5 hours. Can't move for the first one. She's doing great. I'll post again with results.

Almost 5 years.

Mariska's heart transplant was almost 5 years ago!  Can you believe it?  She's had her sweet donor heart twice as long as her own. Modern medicine sure can be amazing. 

I'm starting to brain storm ways to celebrate. What have you all done? Or think would be fun. I'm not much of a party planner. :D. We might have chocolate fondue night again. Can't go wrong with that tradition.

Clinic visit #2 of the year. (Pictures)

Mariska had another clinic visit today. We always start with labs..

She's having some nice lab pulls lately.  Makes us super duper excited!  No IV team in months! This is kind of a huge deal. :D  normally beg for finger pokes to avoid "someone in training" digging around. Yuck I kindly tell them mom doesn't do well with needles... lol.

After labs we sneak out for breakfast in the "old" building. Donuts, blueberry pancakes with buttermilk syrup.  Yes please.  I settle for a stolen bite. ;)  after we waste to much time we race back for echo and the check up.

Mariska is gaining weight... waaaat?  After a year of heading down to the redline.. like nutritionist asking for a food log to see if she really eats... arg. She normally had a bathroom trip in an hour after eating. Her body just wouldn't work right. All her tests looked normal.    Guess having a colonoscopy did the trick and reset her system? a long with ton of prayers :)   she's around 48lbs. Kind of blows my mind. 30 percentile for her age.  They want her to keep gaining saying transplant people are never over weight.... yeah.. just plan to keep doing what I've never changed doing. Ha!

Her echo looked great. The new doc is happy with how she sounds and everything looked. she doesn't have to go back until July for her cath.

Cold sores are lame. She had her first real outbreak this month. They gave her some meds for it... if I remember right it's the same anti viral she has while on the grocery sack of rejection meds... last time it was liquid. I forgot it's name since we called it liquid gold. 45 days worth was around 4,000 a bottle... yikes! 

Side note she's being dropped from her NoQuestionsAskedMedicaid  at the end of the month. I've stressed over it for the last few months. It's been a huge blessing and stress relief to have. Sam got a few raises and a nice bonus last year tipping her out of the range by a few thousand.   Bitter sweet feeling.  I know our Father in heaven is there for us and I know there are other options for help. 

If I can figure this out from my phone I'll post a few photos. The girls are growing up so fast!

Mariska is reading a head of her grade. Her favorite thing about school is recess. Favorite movie is frozen. Loves the color blue. Likes to sit in the heater vents in the morning. Only likes cold blankets at night. Likes watching play duh or toy videos on youtube. she is also learning to play the violin.

Better days.

Thought I had updated since my last post. Maybe my phone never published them?

Things have even out back in early February.  

Mariska finished Kindergarten and misses school already. It was such a blessing having a very understanding school and an AMAZING teacher. We miss seeing Mrs. Bradshaw, but look forward to seeing her passing in the halls.

Kamiah is such a ham who likes to pretend to fart... yeah I have to thank all the guys in our life for that one! ;)    She is a little to adventurous and seems to have nose bleeds once a month. Its something we're watching but not doing anything about. HA whats life with out a little trouble.

Mariska's tummy hasnt been "normal" since last fall. After we increased cellcept. The pain seems to be less often and intense.


We love watching our two girls grow up. Even the bad days there are so many things that having them makes so worth being a stay at home momma.     Last night they fell asleep in the same bed. Be still my heart.  I love seeing the bond they have made, and watching it become deeper.


We have enjoyed having my family all around for the past week. We forget the drama and joy we bring each other, making our reunions more fun! Its hard seeing everyone leaving knowing it might be another year before I see them face to face again.   This time the kids had a harder time saying goodbye.  Good thing for letters, computers and phone calls. 

We have spent the summer swimming, and running to Lagoon. July is a busy month. We're camping or traveling just about every weekend. Phew. Looking forward to days with better routines again soon.

Pull my hair out please?

 Mariska had a half clinic today (labs and doctor check but no echo, Means they are not worried about her heart... just her. =)  

 We had a good amount of labs today. She had a good amount taken I should say. 6 vials normally we do maybe half of one.

Good news from this check up. She gets to STOP taking steroids! We have already taken her off all the "just to be safe" meds that come along with steroids. Wondering if they we're the reason her WBC dropped. 




Since last post Mariska was just starting to take the shots. She has had to do them 3 times so far. 5, then 2, then 3.  Her Neupogen levels have bounced around. 800, 300, 1200, 600, now 200!!!   She's pretty much just got put into a HUGE bubble at home. Its scary... I wont lie. Knowing the risks that come from having nothing to fight off any germs of infections shakes me to my core. 

  Mariska got sick last week, I half freaked out. After being told, if she starts getting a fever get her into the ER fast, will kind of do it for ya. She just has a cold with a small cough, nothing they were to worried about. Good thing for flu shots. 

Since her levels are so low we will have homehealth come by and drop off shots again. No school for her today. She's happy about that, since we started our morning early she is pretty tired. 

Last week I let her sneak to see a movie with Grandma and Grandpa. They saw FROZEN she was pretty excited to have a date, popcorn and everything. I felt she needed something to cheer her up a bit. I think it did. 

Her tummy has been hurting off and on since she got super sick back in September.   Today I asked if we can do another test for crypto.. none of us feel its the issue but I'll sleep better knowing for sure. yay for getting poo tests. 

Today her transplant doctors decided it was time to get out side help for this. We get to talk/meet with hematology doctor soon... I'm nerves...   The labs we had taken this morning they are happy are pending when they asked about her. Step in the right direction.    I feel blessed to know so many people have a hand in keeping Mariska safe and healthy. Its pretty humbling.   I'm waiting for them to call and set up a date to go see them. 


Mariska is such a good understanding kid. She might frown when she finds out sad things that has to happen to her, but she's always quick to look at the bright side and helps me put my smile back on and worries to the side.

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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