Happy Birthday Pictures, Halloween, and Snow.

Little miss bones.

Stopped at Daddy's work to say High while most the building was at lunch before their party. She was excited to see dad at work.

Shh Trick or Treating at Red Gear. Just Sams floor.

At PCMC That Pink pumpkin was her Favorite! She saw it when we walked in and ran to it squilling.

The horse that does have a name now. They voted.

Mariska Strawberry Shortcake Anderson

At Grandma and Grandpa Brownings Ward side walk trick or treat.

So scared of the monsters inside!

She bumped her nose.. thought it needed a bandaid.

Her Hidden Rainbow Cake. Cutting it open made Mariska cheer to see all 6 colors inside still there.

Opening gifts.

With Grandma Anderson. Her Abby Cadabby Party.

Making some music

Misky and Sam's Snowman. She took the nose out so she could eat it. Didnt like that it was now very hard so put it back.

Is it normal?

those with a really weak tummies feel free not to read.   **



Hey Transplant buddies. How common is throwing up?!   Is it just a reaction to coming off the steroids or is it something more.  Once in a while I can see, but Misky hasnt really been her since the ER visit and the pneumatosis/c-diff battle.    


She throws up once if we're lucky every other day. Given her history I"m a mess. Shes LOST a lot of weight. Looking like she'll end the year weighting less then this time last year!.   Feels which I know not to be true. But inside feels like its all being brushed off.


Two weeks ago we met with the nutritionist. She said to cut out all water in her diet. Add cream to anything and everything. Make her go 2 hours between eating. In hopes she'll gain weight.


We also talked about giving her a pill to make her hungry. Its not that shes not eating or doesnt really want to. Its every time she eats a big meal for her * half a slice of pizza for instance* she doesnt keep it in.

Her high for weight has been 13.7kg shes now 11.5kg.... breaks my heart watching this happen to her. I dont pick her up under her arms in fear I might break her.


Will is pass I ask my self. Is it just something to do with the taper? does it have to do with all her past tummy things? is there a kink or blockage? will she be ok? 

Shes still her cute self just not active almost at all. Feels like when she was going down hill waiting for her heart.

I'm asking those who are willing to fast for her on Sunday and to say a little prayer she'll start gaining again.

Miss Mariska is 3!

Amazing she is 3! She turned 3 on the 14th. Had an awesome tiny, just the grandparents over Abby Cadabby Birthday Bash.  She is such a little fighter. They have been 3 of the most stressful years of our lifes but they have also been the best and most worth while. We love our little girl with all our hearts.  Happy Birthday my sweet heart!



*I'll post pictures soon*



Tomorrow it has been 4 months since Mariska was given a second chance at life and was gifted with a new Heart. The donor family will never be far from our minds. We pray for them and are over whelmed with their unselfishness to gift another life when they had to say good bye to their own. Someday we hope we'll know who they are and share our gratitude.

cath/biopsy number 6!

The day before Same day surgery called and did all the pre paper work. Got a chuckle from some of the questions, havent been asked some of those in a very long time. The lady also asked me to list every med Mariska has been on for the past 30 days. Told her she was going to make me bust out the book. She laughed and said to bring it with us when we come in. They liked the printed med list we bought in with us. Love the small things that make everyone life better!  

My mom *Grandma B* got to come with Misky and I for this cath. Helps having someone there with you. Thanks mom for all the help! <3  I never sleep well on nights before we walk into PCMC ever that night was no different. That trip we had with rejection made sure I would never again. Maybe with time I hope.

Mariska was on the grumpy side that morning, Next time we take her to the lab we'll give her something maybe after she picks a toy. She wasnt to happy with me leaving her there. Breaks your heart to hear your child crying after you and having to keep walking.

Her heart looks awesome and no signs of rejection!! Takes such a load off my shoulders when we get a good report.  

No rejection also ment we could stop IVIG early!! cant say how happy I am about that. This months was going to happen at home. Which I was feeling uneasy about. Kind of like keeping the pain at the hospital and not having it come to the house.


Her docs didnt like the risk of doing IVIG again this month after some kids have had bad reactions to it. Mostly for the A blooded kids. *which she is!* there are to many A antibodies plasma in the mix wish can attack their own blood... shutting down other organs! yeah not want we want at all. Pretty scary to hear its happened to others.   She has had a really bad head ache about two days after each treatment. Last one took her almost a month to get back to her self. Think shes still feeling pretty crummy from it still.

Since her heart cath looked good and her echo looked the same also she got to come down on her steroids again. .4mls onces a day now. Cant wait until shes off this drug, and she can be back to her normal self.

Cant tell if its her meds that make her feel icky or if its something else like not being able to be around people being the social butterfly she is. She just hasnt been as happy. Kind of moody and unwilling to eat much.  Sam says shes eating fine. Think I got used to her eating like a teenager and its messed up how much I think she should eat. Making things fun and changing it up so she'll eat it has been tricky.  Today she did eat squash and a bunch of noodles. And didnt throw up!

She is still throwing up now and then. Mostly in the evenings after meds. some of them just are just plain nasty. I want my happy willing to take her meds baby back. Anyone mind sending that back?

Tomorrow she has clinic. Also a bunch of labs. They forgot to get some durning her cath..... ... ... Yeah I know. I beg for finger pokes. Heart momma's anyone else not liking the new lab drawing team?.. They stress me out.  I'll stop there, lol you all know how I feel about that place. Just has to be done.  

Heart Cath and Biopsy tomorrow.

Mariska is doing really well. She stopped throwing up once a day for almost a week now. Changed to anti acid med. As long as she has something in her tummy she's fine and dandy.  Over the moon that its not those bubbles again.

If you are willing, we would appreciate the prayers for Mariska and her docs tomorrow. Also for my self so I can remember everything said. Had a very bad migraine attack last night and just dealing with the after damage of a week long head ache.  I will post when we know results.  Borrowed a request from a friend to share also. I'll post it off and on all winter.


A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Mariska. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Mariska this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Mariska a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Mariska please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Mariska. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Mariska's health and in all honesty her life.

Halloween? is almost here

I posted most of Mariska's pictures on my facebook page. Dont think I'll ever get them posted onto here. Feel free to look at them if you want.

A little update.   *its a bit out of order thrid time trying to write this*
 
Misky had a clinic visit today. Just the normal labs, echo and check up. Her heart Looks and sounds perfectly normal.   Mariska Has been throwing up once a day, I've been hoping its just her prograf which will make you sick if its to high. Which it is. 17 Her normal range is 10-14. So playing with that again. She has lost a bit of weight. 11.95kg. Before her ER visit she was 13.3kg. Not so good.   We're playing with a few other tummy meds to see which will work better for her and putting asprin on hold.
 Her white blood count keeps dropping, which can be caused by two of her meds. which is a little scary seeing now thats all she has to protect her self from germs.
 She had a little to much fun in the echo today. One of her medical staffs *forgot his title whoops* did her echo. She was singing the whole time. Ha shes silly. He told her he'd look for some candy to give to her when he was done. Forgot and came back she looks at him and says "trick or treat" must have bribed someone cause came back with a yummy likely to be someones personal stash of chocolate bars. Silly girl.

Shes doing awesome other then the throwing up once between 3-6pm for a few days. Her glucose was a bit low but think all the candy she had today fixed that issue.

Dr. E is a little worried about doing IVIG again with Mariska. Shes A blood type and there has been some issues with the ivig having A antibodies. = liver kidney and other organ failure of things go bad!!  She'd turn yellow and be one sick kid. So after her cath on the 5th we will see if its worth doing.   If we did do them we have been setting things up with home health care to do them at home. Really hoping she doesnt need the last two.   She had a really bad migraine with the last two and maybe even 3 treatments which is on the list of a reaction so we'll see.

Starting to become angry with the people in the lab where she has her blood drawn... Tired of them blowing me off when I ask for IV team. blah. Guess I'll just have to be a mom there and just be forward.

Heres some pre Halloween pictures. We're planning to trick or treat at the hospital tomorrow, but heres the ones from today. =D

In clinic today they added to the system as Mariska "Strawberry Shortcake" Anderson. I love it. I didnt know this until the end. I was wondering Why so many kept poking there heads in to see her costume. =)

Mariska "Srawberry Shortcake" Anderson

Going to have family pictures done. Woohoo!!

Happy days at home.

Mariska loves being home. Able to run an play all day. Shes doing very well. Every now and then her little tummy hurts or gets upset but those are rare days. I still take her to PCMC twice a week for labs to be done, and once for clinics. Today she had a check-up. Her echo looks good, they are happy with it. Starting to think about changing to once every two weeks! but not until after her cath in two weeks. They said they'll have Mariska withdrawls. hehe. I'm sure we'll have the same but about them. But will be a much welcomed change.

We're planning to have her IVIG treatments at home! I'm kind of unsure about that. Kind of like keeping the painful things away from home.. but will be nice not having to stay in a small room down at the hospital. Her last treatment she was really good until about Saturday *treatment was on Thursday* She had horrible migraines you could just tell she was in a lot of pain by looking at her eyes. Poor thing. Those never come alone always joined with throwing up, Shes still not back to her normal self since then. Looking forward to our last treatment in December.

She came down on her steroids today again. Now at 2gm .66mls. *down .14ml since the last time* We've kind of grown fond of those little chunky steroid cheeks.

She sure talks a lot more now with this new heart. Picking up more crazy words every day. We can sit and chat about something. has made play time a blast.

Thanks for all the prayers and following us. *We have family photos taken last night so some goodies will be posted soon*

Biopsy # 5

Mariska's biopsy on Thursday came back great! Zero rejection =) Wahoo!!!    We took off last weekend on friday to go camping in the Unitas. The weather couldnt have been better, Dare say maybe even to warm? hehe  Misky got to caught 3 fish. She was so excited all week about going camping, and while camping every day she would say "we're camping, i love camping"  Sam even got me to fly fish. Must say think I'll be starting a new hobby next year.

Today we had clinic at PCMC. Her echo looks great. A week or so ago we dropped half of her meds off the list, she was not doing so hot, throwing up everytime she had meds/foods. We've added them all back now she shes doing well. My poor carpet on the other hand took a hit.  We're winging her off from her steroids. prednisone. She has been on .8, and by tomorrow she'll be on .4ml/1.2mg. She'll stay there for a few weeks until the next biopsy then she'll start the wing to be off them!.

Mariska's prograf levels have been almost a guessing game. They are with in range now but still bounce around, depends on how much she eats and if she has runny diapers. *sigh* She'll be off of Vancomycin by monday. not going to miss that bad boy, its made a lot of trouble.


Mariska's energy has slowly come back. Shes almost to her bouncy self again, Shes also eating more and its being digested pretty well. For a while had me very worried.

We're milking this warm fall weather to go and do some fun summery activities, Notinthg like the outdoors.

Thanks to everyone in our ward and friends who have brought dinner in for us. Dont notice how ran down you are until you dont have to fix a meal. Thanks for all the thoughts and prayers.

Tummy Pains.

Mariska and I both had a crummy night for sleep last night. Shes trying to get used to not being waken up every 2 hours and getting the feel for home again. On top of her tummy pain shes still having. And the tons of dirty diapers we have been changing.  Thought we'd wait until all this passes to really potty train her, but shes so ready. To day we had Clinics *will go into that more in a bit* She was doing the potty dance waiting for her blood draw. Took her to her first potty trip out side of home. Think she liked it, didnt want me to go with her until she needed help getting on. haha.   At home she wanted to go potty and pooped twice on the pottty. Guess it wasnt to bad with her diarrhea. Poor thing. Is still having it a few times a day. Top that off with the strongest antibiotic I've ever seen doesnt help anything.

Sam and I really feel her tummy pain is all thanks to Vancomycin 2.6mLs three times a day for a week, 2 times a day for a week and then 1once a day for a week. Its a HUGE fight getting this bad boy down and keeping it there, doesnt matter what we flavor it with. Think the stress is hitting me again, Its hard starting over with a new drug.

This morning we had a clinic visit. ECHO, labs and check-up. Her echo looks normal =) yay! so her moppiness isnt because of that!  Her blood labs I'm a bit upset about.. She has been poked so many times that no one is to poke her with out the words IV Team under their name!. So the lady today "thinks she has one"... had to keep my cool. Wish they would listen to me, and just stick with the finger poke Dr. E said was fine to do. Blah, makes me so frustrated not being listened to.

Dr. E and the team are worried about all the throwing up and redoing meds *about every med!* So they hacked her meds list to only the Must have meds. to see if that helps her tummy. Shes not disgusting food well or wanting to eat a whole lot. But shes getting enough to drink.

Sam and I have felt so out of the loop with the GI team. We have seem them.. who ever "them" are... 3 times since transplant or rather they have seem Misky. The last one I needed a break and took my first afternoon out side the hospital with out her, and missed them. To us it feels they are pumping her full of unneeded meds and because of that its causing other issues.. like belly pain, and C-diff!

Thought I should just vent and get it all out. there you have it. We are so blessed to have all the trained doctors to watch over Mariska, do whats best for her and what has saved her life. Things will smooth out and emotions will also. Just have to keep faith.

Two days ago Was Mariska's 2nd month angel heart anniversary. I think of the donor family often and they are never far from our hearts, we are so grateful for their sacrifice.

Bubbles bubbles pop pop pop!

Mariska's "Bubbles" are gone! Finally got a clean normal KUB *tummy xray* Wahoo!!!


Posted a Video for Pennies by the Inch. Mariska got to help say part of a song. She was so cute and super excited to do her part. "Make it shine"

Primary Penny Song

Juice and water. Ohh yeah!

So her KUB (tummy x-ray) has improved and almost gone. Dr. E came in this morning to say we're going to hold off and wait for a day or two before we start drinking clears... then looked at her PICC line and changed her mind. Its looking bruised, and she just doesnt like how its looking. SO shes getting it pulled once we get her TPN *meal in a bag as we like to say* winged off. Sometime this afternoon that will happen. Then she'll get an IV for one of her heart meds. Things are movin now.

Thanks for all the prayers, =)

Mom mommy. can I have some?

Yep we're still at the hospital. PCMC. as much as we love it here home would be wonderful. Mariska's pneumatosis is slowly going away. I think it looked almost gone in todays x-ray, but we'll know for sure when the doctors stop by to talk about it.

We still cant get Mariska's Prograf levels right. One day its 10 the next day its 22 then 7 and back to 24. Yesterdays was 26! Almost double where we want her. Funny thing is I think shes back on what she was before all this started. The C-diff seems a little unclear how long it takes to go away. Shes on day 7 out of 10 on the antibiotics for it. might not take that home. The doctors said its just a matter of time before someone gets it being in the hospital for so long. I think she had it before we went home last time. Just to many dirty diapers in a day.

yesterday night she had blood in one of her iv lines. Her lipids that always run. I'm still not sure what really happened it was about 3am. I woke to the nurse changing her beding. thinking maybe she just didnt clamp it or there was something drawing. I looked at her clothing her pillow case was covered, and the whole side of her jammies. Makes me worry how much she lost. I have to fight them to try and not waste her blood. Her blood levels are a bit lower but not low enought to worry about. Gesh. The nurse didnt tell the other nurse or right down how much she might have lost. It was a surprise to the morning nurse when I asked how much. nice huh. Most of the nurses have been awesome.

Mariska keeps saying her tummy is all better and asking in a whisper if she can have just a tiny bit of what we sneak to eat. shes to cute, Its sad not being able to give her just that tiny bit. But her spirits are still high, and shes always giggling or smiling. =0)

Almost a week.

Whoops the blog slipped my mind this week. Sorry to those of ya where this is the solo place for updates. Mariska is doing well. Her energy is all back and then some. We did some cultures and she has C-Diff along with the Pneumatosis. yeah.. Its a bacteria with spores thats not killed by wonderful avgard *hand sanitizers*  Lots and lots of hand washing. Before that we came in for Mariska vomiting every 20mins for almost 4 hours.

Her pneumatosis is slowly going away. Her transplant card said we could go home as soon as sunday! I'm not keeping that hope alive. Feels so close. She still needs a clean x-ray before she can start foods again. And the GI team wants to keep a eye on her while she does start.. Have a few words for the GI team that I never see! but guess things are going ok with out feeling like they are in the picture.

Being here for another week after almost a week and a half at home is such a let down. And Costly living here.

We all came down with food poisoning.. or Salmonella. All goes back to Friday night.. Misky and I thought it would be fun to make sugar cookies. Well you have to eat some before... Misky cracked an egg getting to the counter or so I thought. Guess the egg had a crack and she must have made it bigger. We had to run out for something, so I didnt get the counter all sparkling clean. We came home put a watermelon there for a sec. moved it to somewhere else after putting food away. Misky got sick sat, I got sick monday night, Sam and I ate the watermelon monday just after I had gotten sick. It was a huge watermelon so we cut it in half giving it to Sam's parents so it didnt go to waste. Yep I poisoned my in-laws! ha they are better now, but I really do feel bad.

Mariska Loves watching TinkerBell and My little pony's. She also lives her pillow pet Eeyore. Or Ho whore as she calls it. Yeah classy! LOL

She did a little part for a video being made by Pennies by the Inch! Shes a star. Well for a few seconds atleast. She thought it was pretty awesome, She gets to say "Make it Shine" in their theme song. It should come out on Wednesday.

Looking forward to the IHH heart walk tomorrow. Super bummed not being able to take misky, but I really want to go so I'm dragging Sam.

Back to the Hospital

So Saturday morning around 3 am mariska starting vomiting about ever 20 min for a good 3 hours so went down to primaries through the ER, Because we needed to do blood draw down there in the morning.
They did an X-ray and Found that she has pnumetosis again.  Doctors are kind of baffeled and not sure what is causing it. So misky was admitted last night into CSU again and it looks like it may be anywhere from 3 to 21 days here at the hosptial again. So we got a one weekend at home at least maybe nextime we go home it can be longer than that.


Thanks For all your Prayers and support

Home sweet home.

We've been home since the 24th =)  After picking up Mariska's Grocery bag filled with all different kinds of meds for her -yeah there's really that many! We waited for the discharge paper work and to be retaught what signs of rejection are and checked off her 12 meds.

This is what we came home on:
 Prograf x2day,
Cellcept x3day,
Orapred x2day,
Septra 3xweek,
Valcyte x2day,
Nystatin x4day,
Asprin .5day,
Lasix x2day,
Diuril x1day,
Aldactone x1day,
Prevacid x1day,
Magnesuim 2tablets day,
multi vitamin.

Its just a tiny bit  overwhelming.

Mariska is doing awesome! She begs to go to the park and play. If there are other kids she has to wear her mask which brings over a group of them to ask how come she has to wear it. =) She very good at leaving it on and knows when it can come off.  Shes picked up a little more attitude now, HAHA just beware she's always known how to get what she wants so that hasnt changed. Shes also so much happier. She used to have such a cute girly laugh now its a belly laugh at everything! silly girl its still cute. Just with more soul.

We had her first post transplant out patient visit on thursday. makes for a long morning leaving the house at 6. She did super. Didnt cry after the blood draw.. something kind of wrong with that! but I'm very proud of her for being so brave. Awesome durning the echo but thats normal. Had a bif of the wiggles for the blood pressure, what can I say shes a tease.

She no longer needed to be on the Diuril, =) we're down to 21-23 dose a day. Progress.

She stopped taking naps back in January since getting her heart she wants them again, guess that was a sign? Over tired and wouldnt or just couldnt sleep. Nice to put her down at a normal time at night in HER bed.

We still have clinic visits twice a week at PCMC, She'll also have IVIG once a month. Shame the treatments cant get started before 1pm. Makes for a long long day. But I'll take a long visit day then moving back inside.

Thanks for all the prayers, its helped us stay calm and extra positive. <3

Its a 4 letter word..

They said it!! H O M E. Thats right HOME tomorrow!! Eeep. so exciting. Mariska is going to miss all the stickers, toys, and crazy amounts of paint glitter and glue. I'll miss the breakfast cart lady, but I'm sure my body wont miss all the donuts I've eaten while living here. hehe But its so worth it to be home.

We are getting discharged tomorrow afternoon, after all the meds have been filled and I have learned when and what to give around the clock. Oy going to be a lot of work but we've knowingly signed up for that.

I took a picture of the computer screen that read No Pneumatosis present. It was so worthy of a photo.

Thanks for all the Prayers said for our family. The cute letters and comments.

18 days of NPO

Haven't gotten around to blogging. Mariska has been keeping us pretty busy. =)! 

Mariska was put on to a liquid diet, then yesterday afternoon she was moved to a low fiber diet. Still working on what is on that list. So far we've just done soft foods.

Mariska is LOVING having food again. She still wants chicken and pizza but we thought she needs to wait a bit for those.

Today she got to ride her toy car all the way down stairs to x-ray. Sam went with her today, think she was pretty excited. The x-ray tech gave her a bouncy ball and some styling glasses.

Her pneumatosis must be going down cause the doctors haven't said much about it. Just keep saying we're letting her eat!!

Asked Dr. E when she thinks we'll go home, just for a time line- need to know how many outfits have Sam wash and bring back. She teased me about me not wanting to know and just make it a surprise, haha. Asked her if it would be in two weeks she smiled and said I'd like to send her home this week while shes the head card for the week. *knock on wood!* Today was Sunday number 6!! really hoping we're not here for week 7.

Want to make sure I thank the people who have visited or bought us snacks and random things to make our stay better. <3 We love you and thanks SO much.

Run legs RUN.

Today has been filled with new information!  Started the morning with labs *love that PICC line in the mornings*. Echo was next, Misky got her first real blanket today. Love the simple joys. After echo we headed off to x-ray for her KUB *tummy x-ray* then back to the room for rounds.

Mariska and a different idea we came back then she wanted to go for a walk. Had to chase her down the hall with a mask. Silly girl was on the move. After about an hour, yes an hour of her walking around, its a miracle she has so much energy.

Came back for meds and rounds. The cards we're first. They reviewed her echo and x-ray. Said her x-ray looked BETTER!! Yippy! But is still not all the way gone yet. And also her Red blood cell count was low. 28. Should be around 35-45. 28 is the point where they go ahead with a transfusion.. yeah. She needs some more blood. She'll get it once it comes to the room. The cards are going to talk with the GI doctors again and see if she can at least start on a clear liquid diet!


Next was the transplant team. We are coming down on the steroids now. Shes at 4. This morning they went down to 3.7 and tonight it will be 3.0! seems like such a HUGE step forward. Once shes down to 2.8 she'll get the next heart biopsy onces shes been stable for 2 weeks on the level.   Shes going to need IVIG every month for 6 months. The next one is due before the 3rd of September *cant believe it will be almost September!*

Mariska has been a BALL of energy today. Hard to keep up with the kid and pull her IV poll. Phew. She is so excited she has the energy to RUN, shes running everywhere. My friend came after 10mins she was ready to walk. We walked the halls on the 3rd floor elevator to elevator 3 times, then walked down to the 2nd floor did the same thing. And again on the first floor and the kid still wants to walk! What am I going to do with all this new energy!!?? Its awesome. Cant get her to wait so we can put some pants on, Shes speedy.

Just before we went walking one of the card docs came and said we have the green light to start a liquid DIET!!!! There we're cheers for that news. So excited I was almost crying.

Biopsy # 4 results

What a day.   If its ever a super smooth night its a rare one. Last night wasnt to bad, Mariska wasnt to much of a grump when they made her wake up this morning for her x-ray. Then off to the Cath Lab.


The resuts from her x-ray were so disappointing to hear. No change from the last one... We're back to this again.

Just got the results from the biopsy. Her pressures look good and NORMAL. yay. Shes over all is 0 rejection. No anti body rejection. 1C 1B I believe she said hard to hear Mariska was upset at the time. Just a very mild case but able to keep under control.

One of our Transplant docs did some digging looking for other cases like ours. She found 7. most took 16days to clear up and the longest was 21 days. Good to have a goal again.

Better go Mariska is washing her arms with bubble juice. haha. Thanks for the prayers, love and oh all the letters. =)

NPO day 14.

Tomorrow we go down for biopsy number 4. Keep her in our prayers and close to your hearts for zero rejection to go with the wonderful echos shes been having.

We also will have another tummy x-ray done in the morning. This one has been such a test, just sitting around for 2 weeks telling her she cant snack or eat ANYTHING has been heart breaking. I'm praying tomorrow she can start eating foods again and her body was able to heal its self.

I'll post again tomorrow. Night

Things are movin!

Should have posted this yesterday, but time went fast.  Mariska had her KUB *tummy x-ray* yesterday marking day 10.  Later that afternoon someone came and told me how it looks. The nurse before they came looked it up on the computer for me cause they didnt come until after 4. The computer results showed it hadnt gotten any worst and maybe better.

The Doctor had much better news!.. He said on the x-ray half of the pneumatosis was gone! Yes GONE!  WAhooo! -Guess she just needed to finally have a dirty diaper again to get things moving.-  

We'll check again on Monday. If its all gone we can start slowly feeling her foods again.

 I'm so grateful for all the prayers that have been said for our family.

Still waiting..

Dr. E came in this morning after we had Mariska's x-ray and her ECHO done. Said the ECHO still looks good, And theres still no change with her pneumatosis.

The GI doctors also came in and talked to me. Said there has still been no change, We're going to keep her NPO for a few more days. 10-14 days. We're going to stop doing daily x-rays, so she doesn't get a ton of radiation.
At the 10th day we'll do an xray and again at 14. If its still there no change the GI docs will talk to the infectious diseases center and go from there.
 
Not the news we want to hear. Keep her in your prayers so she can heal and we can go back home.
 
Yesterday we changed Mariska's PICC line. Its been leaking and kinking for a while. I got to watch them shoot dye into her and watch the screen. Pretty cool. Weirded me out when her x-ray head moved. LOL didnt think it would be a moving x-ray. Guess I should have learned a bit more before going into the room.
Her Vain was to small for the cath. It would flush just fine but when you go to draw it collapses the vain plugging the cath.
Glad she has a new one with two ports makes giving meds so much nicer with out all the beeping if she bends her arm.
 
Mariska is picking up more energy every day. Wanting to walk a little more. She was pretty happy after she came back from sedation. I walked into the room shes joking and teasing the nurse, Nice to see her more like her old self, the drug must have taken the edge off.  Or maybe she just needed something for pain. Shes been off anything for pain for almost a week now. =)
 
 

CSU *Children's Surgical Unit*

Yep we moved! now in 3080 chilling waiting for Mariska's pneumatosis to clear up so she can eat and we can go home.

Ran into Dr. E this morning. She said Mariska's ECHO today looked really good so they are going to start lowing her steroids medicine amounts. She also said she cant see the pneumatosis but took it to someone who looks at them all the time.. said its no change still, and maybe getting bigger.    So we are starting her on another antibiotic hoping it cures the issue.

Really happy to have a window! yay for natural light again. =) Think misky is happy to get out of the room also. Now we're just waiting to go home.

Getting kicked out?

We pulled the line out today! =) maybe tomorrow night will have less alarms going off, or I'll miss them so much and dream of them.

We also took off the bandage covering from her open heart surgery. Its healed up very nicely.

After the line was pulled we put in a new IV in her hand. Crossing my fingers we dont blow out or it doesnt fail at least for a few days.

Theres talk of sending us up to the step down unit  today! From a heart stand point shes doing stellar. Wahoo. We'll move today depending on if theres a room upstairs for us or not. * The heart rooms are being taken over by all the other inpatients.* So it might be another night before we can get up there.

The only thing keeping us here now is her pneumatosis. Which might keep us here for days or weeks.. eek.

Mariska has been pretty happy today. Went on a walk willingly. Glad to see her get out of her room, had willing to get out of bed.

Shes keeping us laughing like always. Just a bit ago. She looked at Sam *daddy* and said *daddy's stinky, He needs to go to the bathroom" BAHahaha   Her normal one I have to explain to about everyone is "Take her" or "Help her" . I told Sam one day to take her, please I need a break. So now she says it all the time when wanting to be held. hehe.   Every day she surprises us when all she knows.
All the nurses treat her like shes 5 because she is so understanding. our nurse yesterday wasn't going to give her something unless she ask.. I mean shes two dont be so mean gesh. Its easy to forget shes still so young.

She is a such a miracle I dont know what we would do with out her and all the prayers to help keep her healthy.

Kicking "Napoleon" Out ta here!

=-O its it really true?? We're stopping plasmapheresis.. or as we like to say plasma freeze. They could pull the line out today, but we're going to use it for some of her meds like IVIG and ganciclovir. Then we're pulling it tomorrow! It can be pulled once the blood thinner Heperin has been stopped for 4 hours. Some time tomorrow morning it will be taken out.

=) finally a step forward and not 6 back. *knock on wood ;)*

No more fighting with the stinky kinking tube. =)

Thanks for the cards Heres the address if you wanted to send a card.


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

Looking a little pale.

Lets start off with Mariska's pnenmatosis is looking about the same... so that most likely means 5 more days of being NPO ( NO Food for you!) I've told Mariska the kitchen is broken and they cant cook. She seems to be ok with that response. At least for a little while. She hasnt said she hungry Thanks to the lunch in an IV and dont for get the fats. ;) She wanted a cupcake yesterday morning, durning her treatment she wanted Cheese. So just something to munch on.

Her ECHO looked the same also, a happy place to be right now.

Mariska and I had a pretty rocky night last night. went to bed late, 3am for me about 11 for her. Couldnt get her lines to stop kinking. Making all of the alarms scream at us. Atleast to did get to go back to sleep after 7am blood draws. x-rays, vitals, and more xrays. Shes doing pretty well happy playing, not being the huge tease like normal but I'll take it!

They are thinking about pulling her catheter line, forgot its name. We'll find out after we get labs back at 2. So we might get lucky and not have to do plasmapheresis anymore!. That line has given us so much trouble its crazy. If your giving meds threw it you almost have to hold it the whole time, if she moves the wrong way bends her arm to long the alarms go off. We're crossing our fingers we can get that puppy out.

Shes back on almost all IV meds... feels like 1 step forward 6 steps back. Guess that what little bumps mean. bleh I'm done with them.

Her red blood cell, Hematocrit, is really low.. not shocking, We waste 10ccs of blood then pull what they need for labs, a few times a day. Not forgetting the blood she lost while on the plasmapheresis. Later today they will give her so more blood. Ready for her not to be so pale any more. Funny I've never seen her this shade kind of fun. Used to be more blueish.

She just had a sponge bath and is teasing with the nurse sticking out there tongue out. haha theres my baby.

What day is it? how long has it been?

Oh thats right.. 19 days at PCMC. phew days are all blurred together now! Mariska perked up a little last night. Sams parents came to visit think she really needed her goofy grandpa to play and make her smile! She's been in a pretty good mood all day. Gets mad when I leave, but she'll live.

Mariska's Echo looked a little better from yesterday, Yay forgot if I"ve said that, but its worth repeating over. Her x-rays looked about the same today, we'll do another around 6-8 to check again.

Her plasma freeze today went a lot better. Theres a kink in her catheter line.. yeah not awesome. with some pressures it worked fine. Something will have to change with that for next time.

Mariska made biopuddy. Its pretty awesome. paint glue and magic water. really helped me became my lil stress ball. hehe.

My brother graduate's from the air force boot camp tomorrow! We love you Tyler and are so proud.

Thanks for the love and prayers. Misky could still use more post cards or letters.

Bubbles?

Mariska's chest x-ray popped a red flag.. Looks like she has bubbles in between her intestines walls down by her colon.. Not common with heart transplant but seen in immunosuppressant kids. Did a 2nd x-ray of the area. The GI doctor is coming up some time to take a look. She cant eat or drink anything until this is resolved. Hoping we cought it early and that will only be a few days and not something longer.

I'm hoping its just gas, ;) cause shes been very gasses. not cute little tutes there like some guy in the family *not saying names, you all know who you are. hehe* tough her how.

Now her catheter for her plasmapheresis has bubbles too! I mean really?!  The nurse got them all out and all is well. Phew.

Keep us in your prayers. All the news is becoming so frustrating, putting her back onto IV meds at least all the ones that can be given that way. Over all shes doing well.

cellular

The test show its still cellular rejection! and not her antibodies. Putting her back on heavy steroids to help get the numbers back down. She'll have another cath monday, an echo tomorrow to see if it helps. Her plasmapheresis or "plasma freezes" as we call it. some time tonight, should have been at 3:30 and its now after 6, Guess they have had a busy day.

Her test results only half came back so Dr. E had to get on the labs case on why didnt they do the full  pannel. Its done now.

Our nurse Tara last day is today. after almost 30 years with PCMC! Way to go! we'll miss her shes been fun to play with all day.

Now we just wait for a few days before anything happens. Thanks for the prayers. We're in 2507 if anyone wants to swing by and say hello.

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.