Thursday, September 30, 2010

Biopsy # 5

Mariska's biopsy on Thursday came back great! Zero rejection =) Wahoo!!!    We took off last weekend on friday to go camping in the Unitas. The weather couldnt have been better, Dare say maybe even to warm? hehe  Misky got to caught 3 fish. She was so excited all week about going camping, and while camping every day she would say "we're camping, i love camping"  Sam even got me to fly fish. Must say think I'll be starting a new hobby next year.

Today we had clinic at PCMC. Her echo looks great. A week or so ago we dropped half of her meds off the list, she was not doing so hot, throwing up everytime she had meds/foods. We've added them all back now she shes doing well. My poor carpet on the other hand took a hit.  We're winging her off from her steroids. prednisone. She has been on .8, and by tomorrow she'll be on .4ml/1.2mg. She'll stay there for a few weeks until the next biopsy then she'll start the wing to be off them!.

Mariska's prograf levels have been almost a guessing game. They are with in range now but still bounce around, depends on how much she eats and if she has runny diapers. *sigh* She'll be off of Vancomycin by monday. not going to miss that bad boy, its made a lot of trouble.

Mariska's energy has slowly come back. Shes almost to her bouncy self again, Shes also eating more and its being digested pretty well. For a while had me very worried.

We're milking this warm fall weather to go and do some fun summery activities, Notinthg like the outdoors.

Thanks to everyone in our ward and friends who have brought dinner in for us. Dont notice how ran down you are until you dont have to fix a meal. Thanks for all the thoughts and prayers.

Tuesday, September 21, 2010

Tummy Pains.

Mariska and I both had a crummy night for sleep last night. Shes trying to get used to not being waken up every 2 hours and getting the feel for home again. On top of her tummy pain shes still having. And the tons of dirty diapers we have been changing.  Thought we'd wait until all this passes to really potty train her, but shes so ready. To day we had Clinics *will go into that more in a bit* She was doing the potty dance waiting for her blood draw. Took her to her first potty trip out side of home. Think she liked it, didnt want me to go with her until she needed help getting on. haha.   At home she wanted to go potty and pooped twice on the pottty. Guess it wasnt to bad with her diarrhea. Poor thing. Is still having it a few times a day. Top that off with the strongest antibiotic I've ever seen doesnt help anything.

Sam and I really feel her tummy pain is all thanks to Vancomycin 2.6mLs three times a day for a week, 2 times a day for a week and then 1once a day for a week. Its a HUGE fight getting this bad boy down and keeping it there, doesnt matter what we flavor it with. Think the stress is hitting me again, Its hard starting over with a new drug.

This morning we had a clinic visit. ECHO, labs and check-up. Her echo looks normal =) yay! so her moppiness isnt because of that!  Her blood labs I'm a bit upset about.. She has been poked so many times that no one is to poke her with out the words IV Team under their name!. So the lady today "thinks she has one"... had to keep my cool. Wish they would listen to me, and just stick with the finger poke Dr. E said was fine to do. Blah, makes me so frustrated not being listened to.

Dr. E and the team are worried about all the throwing up and redoing meds *about every med!* So they hacked her meds list to only the Must have meds. to see if that helps her tummy. Shes not disgusting food well or wanting to eat a whole lot. But shes getting enough to drink.

Sam and I have felt so out of the loop with the GI team. We have seem them.. who ever "them" are... 3 times since transplant or rather they have seem Misky. The last one I needed a break and took my first afternoon out side the hospital with out her, and missed them. To us it feels they are pumping her full of unneeded meds and because of that its causing other issues.. like belly pain, and C-diff!

Thought I should just vent and get it all out. there you have it. We are so blessed to have all the trained doctors to watch over Mariska, do whats best for her and what has saved her life. Things will smooth out and emotions will also. Just have to keep faith.

Two days ago Was Mariska's 2nd month angel heart anniversary. I think of the donor family often and they are never far from our hearts, we are so grateful for their sacrifice.

Friday, September 17, 2010

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"

Primary Penny Song

Wednesday, September 15, 2010

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, =)

Monday, September 13, 2010

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)

Friday, September 10, 2010

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.

Saturday, September 4, 2010

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