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