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.