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.

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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Hello PICU--CICU

Today was biopsy number 2. Had a great night last night, pushing 7 hours of no one coming to bug us sleeping. =D Last night they put something in her PICC line and let it sit hoping to get it to work better for blood draws, So far I think it worked.. . NPO, no food before her cath. *thats normal ;)* didn't feel like we starved her this time. since it was over the night where she couldn't eat. Off to the cath lab...

After the cath was over we went down to talk with the doctor who preformed her cath. As we waited Dr. Everitt and the team walked by, hard when you hear them saying oh shoot. Then saw us, whoops. Oddly good to know they think its crappy too and not just something normal.. Dr. E talked to us and reviewed her cath results. She said it looks worst then the last two. Her pressures are high. Was 12 on the last one and now 25. Huge change and now her tricuspis valve is not working right also...

They put in a catheter port on her left upper breast area and then moved us back down stairs to the Picu.

Now they are going to put her on Plasmapheresis. Its a lot like dialysis, using the same equipment. It will pull out her plasma and put in new plasma to hopefully pull out the antibodies that are attacking the heart.

The Plasmapheresis will last for about an hour. Once a day. Maybe every day or every other day depending on how her blood labs look.

I'll call this more then a speed bump, but at least we are able to treat it sooner then letting her body reject the heart. Keep us in your prayers. I know Heavenly Father is watching and comforting her, I can feel the prayers sent for our family and the support is a wonderful feeling.

Just another sunday..

Mariska is doing well. The chest tube site is healing up wonderfully, Her echo showed her valve working better, Just a little fluid to get rid off her heart.

She'll have a cath tomorrow, shes first case. for Biopsy # 2  Pray for Zero rejection

The 3k a pop IVIG drug look like it did its job. =) We'll really know if it did tomorrow.

Misky's PICC line is still having trouble. Had to flush it 6 times to get any blood return... The plan is to get it out while she's in the cath lab. Dr. E doesn't think the convenes of it is worth the risk of infection, no do we.

Her nurse is Matt again. He has nicked named her CoCo. so funny. he'll call her coco she'll say no I'm not coco yOUR coco. Sillies. =)

Wagon rides.

eating her 2nd dinner that night. Yummy pizza.

working out while playing bingo

Lunch time with daddy.

Crazy water free shampoo, that stuff is Awesome. ;) going into the camping bag. hehe

Playing with grandma and pa Anderson.

Chucky cheeks.

Going to her ECHO. Check out the tiny wheelchair, She wasnt sure about riding by her self.

Making a hospital buddy. Playing doctor, putting bandaids, giving meds, and doing an IV. Think it helped her a little =)

Cabby her dolly has bandiads on her face.

her food gets cut up to TEENY tiny Little pieces.

Washing her hair with water.

Playing in the kid zone. They opened it before anyone else could come, and cleaned it the night before so it was nice and clean. Fun to get out of the room.

borrowing toys from the play room.

Cuddling with daddy this morning.

Wagon ride with all her buddies.

Rejection

So here I was thinking oh today will be easy *no pokes or crappy news* This morning they went to pull blood from Mariska's PICC line *yeah the one in her arm to her heart* they flushed the line then went to draw the blood got the waste blood changed tubes and then nothing, couldnt get anything from her line, grr so we flushed it again the nurse said maybe they will be ok with just using the "waste blood" looks like its been ok so far. The nurse said it might just be a flap at the bottem opens when you push something in but closes when you go to pull.. kind of like a one way door?.. we waited a while she came back a while later and it works fine now. Phew!

During the while I talked about above, Misky went down for an echo. The nurse asked if she wanted to ride in a wheelchair or in the wagon, she picked the wheelchair. She found a peds one. That was SO stinking small and cute. Think Misk was sad she didnt get to ride with me like before. But soon got over it.

Her echo was pretty fast about 15mins. Then we came back up to the room. Childlife popped in and Asked if we still wanted some tips to get misky to take her meds better. She'll come back later today, and make a hospital buddy doll with Misky =).

Emily one of the transplant cords. Called and wanted to come up and go over some discharge training with me and to set up a time. Ended up having Misky's echo fall into the middle of it so pushed it back to 2.

Then She came up to drop some news... ready? cause I'm still not. Maybe its not to bad and its just the straw that crushed the camels back.

She said Dr. E and another Doctor looked at Mariska's echo dont think its better or really worst. Which means the nasty immunosppressive steroids arent taking care of her Miral valve.. And that they are going to start her on a a new antibodies rejection ivig drug. She also said they know the donors antibodies now and can treat with the IVIG drug.

The IVIG drug is a very slow iv med with a lot of allergic reactions so they have to give her Tylenol and benadryl to prevent it from flaring up. And that we're not going home tomorrow.... looks like after Monday or Tuesday.. They want to do another biopsy to see if this drug helps her heart or not.

If you still wanted to send a card might as well. We could use the good vibes our way. They can mail them to our house if she's home when they come. 

Thanks to all of you who have sent a card or comment =) nice to know others are following our story and for all the prayers.   I'll try and post some pictures later. The steroids have made misky's cheeks look huge. thought she was just putting food into her mouth keep it like a chipmunk. HAHA Love those cheeks. <3

How many doctors can fit into Mariska's room. ;)

Misky is still doing well. Think she misses a full good nights rest, as do her parents. Mariska is eating more day by day. Today I didnt think she was going to share any of her breakfast! She ate her bowl of fruit loops, then I ordered her french toast sausage, a plate of cut.. diced fruit and a blueberry muffin. She did share everything but the sausage and fruit loops. hehe. What is she doing to do when she comes home and its no longer a buffet of everything she likes.

Last night wasn't as bad as the few before it. Just had her nurse in and out all night waking her up for meds, vials, poor thing went to be very late. Shes making up for it now by taking a nice nap.

This morning she had her blood labs. Took them a while to find which overly poked hand would be best to add another poke. Once that was done she headed down to x-ray in the wheelchair on my lap. Think she enjoyed the ride the most today.  Then came back feel asleep for a 20mins. Time for meds and blood pressures, O2 stats and the rest to be checked. Visited with Dr. Laura stopped buy and talked to us. She said we're just hanging out until she has her Cath on weds to check and see if cmv is really a risk or just a saftey step.

We changed some of her meds around. I'll remember the names better when I see the labels more often. Shes off of zantc and on something else like it. Silly drug should help settle her tummy but it just makes her well you know empty it. Shes also only on one IV med now. Just the one to treat cmv. Shes on a better time schedule now. No more 2 or 4 am meds. YAY!

She had an echo today. It looks good still a little bit of fluid and one of her valves looks like it is having some leaking.. we'll learn more about that on the cath.

The pedi cards came by.. all erm 6 was it? then followed by her transplant team. I was getting nervous seeing all those people standing out side! about 9 with the team. It was very overwhelming to say the least. Dr. Everitt is back from vacation now, so we got to see her again. She shes concerned about the fluid so we increased her lasix. She also said the CATH will be tomorrow.

        And the word HOME maybe weds! back on friday for clinics or home on Thursday and back for clinics on monday. Just depends on what the biopsy shows. time to bite nails.

Misky is still fighting taking her meds. some of them are down right nasty so I cant blame her, but its something she has to take.

Thanks for all the support!

Oxygen Stats, and picture heavy.

Lost track of the days after 4Happy Birthday Sam. He had his party in the rainbow cafe. Misky and I had cake later. haha they bought him a "I am Sam" bag. Just in case he forgets who hes is. ;)

Day 4First time Daddy got to hold our baby after surgery.bad pic, making her get up and walk. She wasnt to happy about it,Pfew the reward was to ride in the wagon around. Playing with puppies in her bed. After her last chest tube came out. She wanted to walk. Think she just wanted the rest of Sams donut, hehe.Feeling up to playing. Her with all her babies. =) Dr. K wishes he had that many toys as a kids. Misky was pretty excited to see her "Meko" Being spoiled Playing with HaileyAfter all the failed pokes. Warming up her hands and feet with hot packs. She didnt want to take the one off her hand cause it would get cold. Being silly taking pictures.

Last night we winged her all the way off of Oxygen.! She no longer has a leash. Might miss that thing, always came in handy when I went to see which room she ended up stopping to play. Her O2 stats stay around 99. Such a beautiful number.

After Mariska got the middle and last chest tube out not even 20mins later she said " I want to walk" That thing made it hard for her to do anything really normal like taking a deep breath.

Misky was pretty happy most of today, until she wanted to take a nap and it was time for vitals. She made me laugh all of yesterday and today. Everyone who'd come into the room and not hurt her she would say "Thank you"

This morning wasnt the best. Forgot to add I only want the IV team to pull her blood, so philbotimist came in to draw some labs... they have never ever! been able to get her vains or get lucky fishing around in her arms for them. So he thought he found a vain poke.. nothing, then starts the fishing.. nothing... goes to the other arm does the same thing, I had to tell him he has to stop or I'll loose it. good thing dinner was hours ago. blah. Then IV team came in and put a new IV in her foot.

Later the iv in her hand blew out and had to be removed, so we got lucky she had the one in her foot. =) yay.

The Surgeon's team is passing her to the cards. Which means shes stable enough to not need to be under Dr. Kaza's direct care. Awesome. He'll still check on her but shes not as high on the list =)

The new doctors that are following her now came by. Asked some questions for their records. Like did we know before she was born and all that good stuff. Dr. Laura said something that really peeked my interest. She said she was reading Mariska's charts and saw her donor heart said it is possibly has CMV but isnt for sure. She was going to check and make such which is it.  If the heart does test positive for cmv she'll stay on IV antibiotics for 2 weeks -so just one more to go- crazy now my mind keeps playing with the idea of going home sooner pfft. silly me. only time will tell.

They are talking about doing a PICC line (IV from the middle of her arm to the top of her heart) if we're planning to be here longer then 6 days she'll have it done. It will save her arm from needing pokes every morning and the about every other day new IV line.

Everyone here keeps saying shes a really smart two year old, and understands a lot of whats happening to her. Shes started eating pretty well, now we need to work on getting her to take her meds by mouth better. Some of them are just plan nasty. She'll learn she has to take them, Pray its sooner then later with us.

Its nice seeing her so colorful, and my heart is filled with gratitude towards the donor family. Because they gave their child's heart my daughter will live a healthier live. Words can not express how we feel. We keep them in our prayers daily.

First night in he CSU

OY! Forgot you dont really sleep on the 3rd floor, the bed is just for looks. Last night was just stat checks fixing the pluse ox so it reads right. Giving her meds iv meds then flushing the line. Had dreams about the beeps around the room. Poor misky didnt sleep so well either. About every hour there was something going on, like having a new baby again! Misky had chest x-rays this morning, then back to sleep for a while, then meds, Nurse change, IV team for blood draws and a new IV. Dr. Tanee (sp?) came to check on her.

After a few more hours, she got her Chest tube out! the one thats as big as my finger. Also took out the pacer wires. =) 

Dr. T said the donor heart tested positive for CMV, So we might be here a few days longer then she'd need. To make sure she doesnt get it. Just something tokeep a look out on.

Her chest x-rays looked good. And now shes having an echo done to check on the fluid. She'll have a heart cath sometime next week for a biopsy to check for rejection. Keep your fingers crossed when that comes and pray or 0 rejection.

Misky heard a dog tag jingle and has been in a happy mood for a few hours now, =) really kicked in once the chest tube was out. Shes giggling, eating donuts, playing with toys and coloring. Nice to have a day where shes not a total grump. yay for smiles!

Fun having surpised medical staff saying she got her heart fast. =) Thanks for all the love and prayers.

Baby steps.

Dr. Kaza comes around a few times a day. Kind of wonder when he sleeps. ;) He wants Misky to get up and out of bed 3 times a day. Last night was the first time she went for a wagon ride with the new heart, ha ha I know wait for it, I'll say that one a lot more. We had her walk from her bed to the door.. well the word for what we got her to do might not be called walking but keeping stiff legs and being pushed. Silly girl.

Today She got two thats 2! chest tubes out. WAHOO. Still has fluid behind the heart, Dr. K doesnt think that tube will really get it all but we are hopefull. Took her out for another ride. The cleaning guy came so we stayed out for a few more laps. Think it did her a lot of good.

She got both of the IV's out but got a new one in her other hand. at least she has the one off her ankle. Might hurt to bump walking.

SO the word Floor was said a few times today!! Waa really? moving to the step down unit??? not even tricked with maybe tomorrow? =)  They have to get the discharge papers, so maybe around 1, and a jokingly in 12 hours. Aw thats better sounds more like it.  **Edit We're waiting for someone up stairs to go home so we can move up**

Mariska isnt such a grumpy goone. She ate a little breakfast, which is a lot more then we could say yesterday. Speaking of yesterday. Told my mom if she wants to see her she has to bring a cupcake to get in, she asks how come, cause misky and I want one. Misky enjoyed a few blobs of the lemon frosting I enjoyed the rest. =) thats the first thing she'd wanted to eat all day. Thought it might hit the spot.

Found out a few days ago we have family here in the CICU. Crazy huh! Turns out Sams grandma's brothers granddaughter has a baby here also. I stop by now and then to visit. Shes got tons of dark hair, and is about 5 months younger then Misky.

Thanks for the letters. =) Thoughts and prayers. <3  We had visitors last night just when I thought there'd be none. so many in fact the transplant team called Sam to make sure everyone wore masks and washed their hands with hot soapy water just before entering the room. Feel loved. Those of you that wanna come just make sure your not sick or have been around anyone who has. Just a small cold could kill her. Not something I'd take lightly mind you. But dont let that stop ya if your well and want to visit. =)

Hugs

AR lines are outta hear!

Mariska is doing well. Kind of a why did you do this to me grump. =) Shes looking more pink every where, not just a pink but she glows! Her skin looks so beautiful.

Dr. Kaza came by when the Nurse practitioner didnt want to pull her AR lines to hard. Pulled them right out. He stripped her chest tube.  *Helped clean the tube and make a vacuum* enough blood came out so they are going to leave them in until tomorrow.

Her ECHO this morning looked good all but some fluild behind her heart. Which is another reason the chest tubes are staying in.

Today is Sam's birthday! Happy Birthday babe we love you. <3 <3 <3

When we came this morning she was asking for us. =( and was sad, Poor dear. In a few days I might need some one to keep her company so We can leave to eat and what not. Just no sickies.

Breaths of air.

Talked of today being the day she comes off the ventilator. My sister and family came down to the hospital today, Visited then went and ate. Almost took her off when we planned to leave but decided she was to a sleep. The nurse took a break then came back while we we're gone. Forgot to give us a call when it happened must have missed passing it on. oh well. When we got back she'd had the breathing tube out for 45mins. They pulled it at 2pm. Shes been doing great. Seems a lot more comfortable now that its gone. YAY.

Shes working on getting the pain meds and sedation meds gone slowly. Thinking the chest tubes will go sometime tomorrow.

Mariska can start to drink clear liquids later this evening. After shes hit the 6 hour mark of breathing on her own.
Things are moving right along.
Loves.

Working on PEEP

Today they started a few other immunosuppressants. Added a feeding tube for one of the meds :o/  The Nurse said when she gets the breathing tube out she'll take that one out also.

Mariska is hanging in there. Shes not trying to sit up and remove things any more. She was a stinker yesterday.  Told her she can go home when everything comes off. Whoops once we left she started trying to pull things.

They turned up the PEEP (pressure inside the lungs) to try and stop some of the bleeding. Her heart had started sending feelers you can say to the lungs in search of more oxygen for the heart. Had no idea the heart could do something like that.! So they had to cauterize  all the vains to the lungs, Turning up the peep is like holding pressure on a cut helps stop or slow it down. Clear as mud? good.

Now the blood has slowed down and shes not moving and trying to cough as much. Looking to get that removed with one of the 3 chest tubes.

The pumps are drugs are all slowly being removed. Thanks for all the comments here and on facebook. Also thanks for the emails to the hospital.

 The next post will be pictures!

Send a letter, mail a hug

Sorry for not posting for SO long. Something was up with the laptop... user error ;) and then couldnt get blogspot to work at the hospital. I"ll have sam give an update on all of todays events.

A few friends have asked how they can send a letter or post card. You just send it to the hospital and they will get it to her. Heres the address.


Mariska Anderson

100N. Mario Capecchi Drive
Salt Lake City, UT 84113

I was talking with the social worker about what to have others do when they want to help, Most of the time I'm just not sure what I need help with. But I thought this would be good for misky to look back on and see all the love and prayers from all of her Fans. =)

Shes doing well, going to try loosing the breathing tube tomorrow instead of today. She has some un needed vains in her lungs .Collaterals. So they cauterised them and now shes having a little bit of bleeding. Shes been trying to sit up! silly thing. So they gave her some more of the gooood stuff to help her stay asleep so she can heal.

The Call!

The madness has slowed down enough for me to get a post out.We got the call from transplant that they have a perfect matched heart for misky!! <3 Amazing, So grateful to the donors family what a wonderful and painful thing for a parent to do. We'll always be grateful for today for this news.

 The call came at 8:30 we hurried got up, ready and out the door. Checked into the PICU at Primary Childrens in Salt Lake. Waited for a bed. talked to the attending physicians, met her nurse Laura. Talked to the nurse she had a few weeks ago she was surprised to see us back so soon. =) The transplant team was also surprised she was getting a heart so fast. Status 2 normal wait is 150-180 days. Shes only been listed for 35days. Truly a miracle. We have been blessed. Thanks to all the prayers, fastings, blessings, and her name being in the Temples.

When we got here they let her eat something since she wasnt going in until 4ish. FruitLoops, she ate all of them. Wonder if she'll blame this all on the food and never eat them again. lol

Late both of Sams and my parents showed up. Gave her a blessing of healing. After watching a few movies she feel asleep and took a nice nap. woke up when Doctor Kasa came when she had just woke up and want to happy. He went over all the same things as last time. Talked to the anesthesiologist Matt about all the risks before Doctor Kasa came in. Took her chest x-ray then Matt walked Sam, Misky Tyson my brother and I down to the OR. Gave her some versaid (sp?) Which kicked in pretty fast. He was looking at her trying to get a smile when she busted out laughing with a huge ol' grin. Then went back to being grumpy while they walked away. At 4:37

Now we're sitting in the Same Day surgery waiting room ALL to our selfs. With Sams Parents, My parents, Tyson, my Grandparents Browings, and soon to be my dads brother and wife. My sister Aleatha, Steve, and Jessi. My sister Tanya, her husband and two kids are driving in the morning for Washington. Gonna be a long night. Surgery will be anywhere from 6-10 hours.
Keep the prayers coming. I'll update as the news comes every hour.

Missed the bullet?

hmm lot to upday. Mostly fun things and the places we have been.. I'll save that for another time. Today we had a check-up at PCMC transplant team. They wanted to do another echo and some labs.

Misky was really good for her ECHO. Did ok on the first blood draw.. the 2nd one she wasnt happy she had to do it again! She came home with One bear and 11 stickers, and 5 sugar free suckers. Pays to be happy.


Echo looks the same... labs look the same... she hasnt gained any weight since March.. cant be listed as a 1B until she falls under the 10th% for her age. *6 more weeks not not gaining and she will* for now shes still listed as 2.


They *the transplant team* didnt feel good about admitting her today. Theres many new risks of being healthy sitting in a hospital with ill kids. For now she'll be at home.  We'll talk to the on tues day if shes doing well/same then we go in the next week but if something changes then we see them in a week.
 
Feels like we may have missed a bullet but the bomb is about to drop. Oh I pray I'm wrong... So many things to worry about with this new adventure.
 
Shes doing well enough to be a hand full in the hospital but is slowly getting sicker. Have a question for heart families. What do you do about church?? They say not to go and risk betting her sick but we need to be refilled spiritually. What are the options? :S
 
Thanks for keeping up with our slow but wild ride. <3

The call

Got the call/page from the transplant team yesterday around 4pm yesterday. They had a potential donor! a perfect match for her. <3 Sam was just getting home from fishing, Misky and I we're out shopping. This might be a watered down version so forgive me for the mess I'm about to write. ;)

Walked up to the PICU then down to bed 2506 around 5. Hooked Mariska to all the standered monitors. Pulsox, blood pressure, heart leads and an IV. She was super good. Laughed and played with the IV team it was pretty cute. She wasn't such a heart poke being on blood thinners might have helped there.  Talked with most of the picu doctors, then waited for Michelle from transplant to come up and go over the last paper work for us to sign.

Then met with Dr. Kasa *the surgeon* He is such a pleasant person to talk with. He looked at her ECHO and said it gave him chest pain looking at it. ( she is very sick in the inside) He walked by the room, had Sam get me and told the nurse. Are you sure thats the right kid?  Shocked at how well she looks and is very active. Not what he thought he'd see that based on her echo. Said shes the best Hypoplastic he has EVER seen! and ever has pink lips. =)  That is what prayers from all over the world can do. Shes a miracle!
He went over the risks on surgery with us. Said she was 3rd on the list. He got number 2 to back down, they took the bait as he put it. lol. The 1st in line was Standford's little one. Just waiting to see if the size would be ok.   Recovery time looks like 2 weeks in the hospital. (kind of shocking was planning for a month yay!)  Dr. K went over pretty much everything.
My dad wanted to know if we could keep Mariska's old heart ( joked about keeping it over the fireplace or in the meat draw to make my mom crazy. haha love my dad.) He looked at my dad and said "I think you've had to much sun" Think that took the rest of the night to gather that was a no, you dont reallly wanna keep it/ yo crazy! lol at the time it felt like he was just changing the subject. ROFL. He did say how ever he would bring her heart in for us to see!

Around 10 they said the other team is taking the heart. All the doctors said they we're sorry for all the trouble and she didnt get it. Also thought it would be pretty amazing for a lv 2 and only being on the list for less then 3 weeks to get a heart that fast!  Looks like 4th of July will not be viewed form the "house on the hill". We're doing ok with it all. Feels like maybe to ok with it. Wanted to go camping this weekend while we can. =)

Thanks for all the prayers!!  I update more on facebook added a tag. Your more then welcomed to get more of my thoughts there.

Hugs Melynda and Family

Happy News.

Had a check up at PCMC today. The team wanted to check her weight and see hows she's doing over all. Shes still on 1/2 liter of  02. -Which has made a world of a difference. Shes back to her happy bouncy giggly self.  We met with Michelle and Emilee they checked her O2 stats76-80 better then the 69 last week. Checked her blood pressure and then off to the scale.

Shes gained 2 ounces in less then a week. She has been a nonstop eating machine!! Granted most of it has been breads and junk like chicken nuggets, fries, pizza donuts and a few CupCakes. Lets not forget how much everyone spoiled her this week =).  Gave up on veggies this week just wanted her to gain some weight. Looks like it payed off. Now back to eating the green stuff.

They talked to Dr. Everett who was pleased with her numbers. Said they didn't want to admit her today.!! YaY!! Soo happy shes doing well enough to be at home. We'll go back on the 1st of July for her "in a month check-up"

Thanks for all the prayers for our family. <3

A heart momma friend of ours took our family photos this week. Thanks so much Lori!!