Update

So Mariska went in for an Echo today and Dr Everitt said she is very pleased with everything and the Mitral valve isnt leaking anymore and there is only a little fluid around the heart..

Yay Misky.. Hopefully this means we get to go home soon.

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

Biospy Results

Dr. Everitt Called us last night and told us that the heart is only having a mild acute rejection which is a good sign. She just needs to be on an I.V. dosage of steroids for a few days and they set a goal to have mariska go home on Friday.  Yeah...  So hopefully all will go well and we can leave soon..

Oh Me Oh My. Please Please

Dr. Everitt came and talked to us about what the leaking of the Mitral Valve means, She explained that it is some type of Rejection of the heart  that is causing the Mitral Valve to leak and that we should hopefully find out what it is exactly Tonight when the biospy results come in.

The First Type of rejection that it could be is a cell rejection where the cells dont recognize the new heart tissue and reject the heart.  This is what we hope is the case. This is what they think it is so they are doing more steroids to stop the cells from rejecting it which means probably wont be out of here at least until friday.

The Other Type of Rejection is an antibody rejection of the heart. Where the antibodies see it as a foreign object and attack it. If this happens to be the case the with have to put her on a machine that is kinda of like dialasis that will pull the antibodies out of the blood.  We hope this isnt what is happening because she will have to go into the PICU again and for another week. Which will not be fun for any of us. 


So we are saying oh please oh please be the Cell rejection and not the Antibody rejection.


Thank you all for again for your prayers and support

Chest tube site.

Misky is out of the cath and back into the room and has some lunch. Her pressures are a little high, but are excitable for a newly transplanted heart. =)  While she was in the Cath lab they did an echo and put in a PICC line-yay for no more pokes!

Bonnie Clay looked at her scar and her chest tube wound. Said her scare is healing wonderfully. she put some strips on her tube site to hold it until she came around later. Leaked and they came off. ugh.... she stopped by the room and put a bandage on which is almost ready to come off. Really hope its just the fluid around her heart that's finding a hole to leak out of, We ran into Dr. AK on the way to see Misky in the PACU. He said hes not to worried about the leaking, and basically said the same thing. Hes going to stop by and check to see what it needs done and if the Wound team needs to come and help it heal.     looking like an open half an inch open wound now. =(

Shes on a new steroid drug, not new just back to the IV because her Mitral Valve is having some leaking issues, hoping they can get her blood pressures down a little to help. Also maybe a sign of rejection. we'll know more when the labs ...are done.


 Busy morning. 

Pictures. =)

Welcome to Misky's bubble.

Ready for a ride!

Her Piggy breakfast.

Her Poster!

Just starting her painting. Thanks Kids Crew.

Today. Playing with Daddy.

This is what I get for saying Misky give mommy a smile. hehe

Sounds like her Cath will happen around 11. Just takes a few hours. They have to go in from her leg, becuase she had some repairs done to the vains in her neck.

Her weight has been all over. checked in at 12.2. Onces we got to the floor she was 11.7. Few days she was 12.1.  She should be packing on some weight with all the food she's been eating =)

# 1 heart biopsy

Misky has her Cardiac Catheterization around 11:30-12. Keep her in your prayers and cross your fingers and toes there's zero rejection. Also that her chest tube site will stop oozing and heal the way it needs to.

Time for rounds. The pedi cards say they heard a low pitch sound... hmm guess we'll learn what that means after the cath? *bites nails*

Mariska is happy when shes not thinking about how badly she wants a drink of water. Tricky to keep someone happy when you cant feed them.

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.

We got a smile :)

We were sent upstairs to the 3rd floor around 2:30 Yeah up to room 3079. At first mariska seemed a little scared being in a new place but she soon warmed up once the nurses left and we got the First Smile since she has had her new heart. She went back to her old self and wanted to read books and paint her fingernails and talk like she used to.. Yippy.

Although she is happy as soon any nurse or doctor comes in she immediatly goes quiet and gets scared, (For Good Reason). But overall she is doing really well. Earlier in the day we both held her for about 1 hour in a half and it seemed to perk her up a little. Dr Kaza said that she still has fluid around her heart but isnt really worried about it sense her old heart was so big it was just a way the body is filling in the excess space.

Thanks for all your continued support and prayers it helps so much.

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

Discomfort

Hmm Posting the same things over and over are just getting boring. :P

 Now for an update. They took our her AR line *artery line in her wrist* YAY!! This morning during shift change. Is down to just two IVs. on her in ankle and the other on her left hand. Pacer wires, for just in case, oxygen tube, Three chest tubes and some band aids.

 Misky is still a bit of a grumpy monster. Ate a breakfast drink this morning, For lunch she had a popcial yum yum. Oh and 2  or 3 cheetos. She got mad when I tried making her eat a chicken nugget. *sigh* She'll come around and want to eat again. Soon I hope.

Her Heart is working wonderfully. But she still has a lot of fluid around her heart (guess that should be normal givin all the new space, things need to get moved around in there) So they are leaving the chest tubes in until tomorrow.. yeah I know the word tomorrow again... this is tomorrows-tomorrow. Guess not the right one. hope tomorrow will be the day they come out. She had another ECHO today. =) Got to see what a 4 chamber heart looks like. Yeah it was pretty dang exciting. The tech said she'd give me a copy of her new heart and old heart on a CD. Super excited. Will be neat to see them side by side.   She still has a lot of fluid in there but not as much as yesterday. =) they bumped up her lasix *just a diuretics) Hopefully that will dry her up so the chest tubes can come out tomorrow. Keep her in your prayers.

Sam got to hold her this afternoon! So jealous. My turn will come I'm sure. Shes having a hard time coming off of morphine and over to just Tylenol. Tylenol doesnt do more then take the edge, and morphine puts her to sleep drops her heart rate makes her ich, but takes the pain. soon we'll find the balance. oh shes away time to hold her =)!!

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.

Pictures. Her old heart and the first day in recovery.

Misky and daddy Sunday morning. =) Just walked into the hospital.

Waiting room. Misky is all checked into the PICU and in the OR. My grandparents had there 60th anniversary on saturday.   

There it is. It should be the size of a golf ball and it the size baseball so enlarged rubbery and flabby. Should be a harder and structed. Its the size of an adult heart. Its stringy inside. Amazing thats whats been keeping her alive

All the burned spots are from all the collaterals.  You can see inside her heart better now. Above the hole theres two smaller holes. The one on the right is the Atrium, the one on the left thats Teeny Tiny! is her Aorta. Should be the size of a pencil but is the size of a noodle.

Matt, anesthesiologist Said when they saw her heart it looked like a wet paper bag. They'd touch her heart it would go all crazy. Its one very sick little enlarged heart.

Getting a chest x-ray. The cart out side is all the gowns, masks, gloves for the medical staff to keep on if they touch her to keep the gems out. The towers on the floor net to the tech are for the chest tubes drainage.

shes a little puffy but not to bad.

Her stats!! 95!!!! Had to fight back tears when I saw that. She used to stat 69 for a low 85 high on room air. AMAZING!

Her and all the meds.

12 hours or so after post op. perfect

Her heart rate dropped to 110 so they had the pacer on for a few hours last night.

her hands and feet are a little puffy.

Jessi my niece brought her some super cute hair clips. Misky has to wake up more to see what else =)

My little girl.