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.