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.

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.

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.