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.

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"

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

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. =)