CSU *Children's Surgical Unit*

Yep we moved! now in 3080 chilling waiting for Mariska's pneumatosis to clear up so she can eat and we can go home.

Ran into Dr. E this morning. She said Mariska's ECHO today looked really good so they are going to start lowing her steroids medicine amounts. She also said she cant see the pneumatosis but took it to someone who looks at them all the time.. said its no change still, and maybe getting bigger.    So we are starting her on another antibiotic hoping it cures the issue.

Really happy to have a window! yay for natural light again. =) Think misky is happy to get out of the room also. Now we're just waiting to go home.

Getting kicked out?

We pulled the line out today! =) maybe tomorrow night will have less alarms going off, or I'll miss them so much and dream of them.

We also took off the bandage covering from her open heart surgery. Its healed up very nicely.

After the line was pulled we put in a new IV in her hand. Crossing my fingers we dont blow out or it doesnt fail at least for a few days.

Theres talk of sending us up to the step down unit  today! From a heart stand point shes doing stellar. Wahoo. We'll move today depending on if theres a room upstairs for us or not. * The heart rooms are being taken over by all the other inpatients.* So it might be another night before we can get up there.

The only thing keeping us here now is her pneumatosis. Which might keep us here for days or weeks.. eek.

Mariska has been pretty happy today. Went on a walk willingly. Glad to see her get out of her room, had willing to get out of bed.

Shes keeping us laughing like always. Just a bit ago. She looked at Sam *daddy* and said *daddy's stinky, He needs to go to the bathroom" BAHahaha   Her normal one I have to explain to about everyone is "Take her" or "Help her" . I told Sam one day to take her, please I need a break. So now she says it all the time when wanting to be held. hehe.   Every day she surprises us when all she knows.
All the nurses treat her like shes 5 because she is so understanding. our nurse yesterday wasn't going to give her something unless she ask.. I mean shes two dont be so mean gesh. Its easy to forget shes still so young.

She is a such a miracle I dont know what we would do with out her and all the prayers to help keep her healthy.

Kicking "Napoleon" Out ta here!

=-O its it really true?? We're stopping plasmapheresis.. or as we like to say plasma freeze. They could pull the line out today, but we're going to use it for some of her meds like IVIG and ganciclovir. Then we're pulling it tomorrow! It can be pulled once the blood thinner Heperin has been stopped for 4 hours. Some time tomorrow morning it will be taken out.

=) finally a step forward and not 6 back. *knock on wood ;)*

No more fighting with the stinky kinking tube. =)

Thanks for the cards Heres the address if you wanted to send a card.


Mariska Anderson
100N. Mario Capecchi Drive
Salt Lake City, UT 84113

Looking a little pale.

Lets start off with Mariska's pnenmatosis is looking about the same... so that most likely means 5 more days of being NPO ( NO Food for you!) I've told Mariska the kitchen is broken and they cant cook. She seems to be ok with that response. At least for a little while. She hasnt said she hungry Thanks to the lunch in an IV and dont for get the fats. ;) She wanted a cupcake yesterday morning, durning her treatment she wanted Cheese. So just something to munch on.

Her ECHO looked the same also, a happy place to be right now.

Mariska and I had a pretty rocky night last night. went to bed late, 3am for me about 11 for her. Couldnt get her lines to stop kinking. Making all of the alarms scream at us. Atleast to did get to go back to sleep after 7am blood draws. x-rays, vitals, and more xrays. Shes doing pretty well happy playing, not being the huge tease like normal but I'll take it!

They are thinking about pulling her catheter line, forgot its name. We'll find out after we get labs back at 2. So we might get lucky and not have to do plasmapheresis anymore!. That line has given us so much trouble its crazy. If your giving meds threw it you almost have to hold it the whole time, if she moves the wrong way bends her arm to long the alarms go off. We're crossing our fingers we can get that puppy out.

Shes back on almost all IV meds... feels like 1 step forward 6 steps back. Guess that what little bumps mean. bleh I'm done with them.

Her red blood cell, Hematocrit, is really low.. not shocking, We waste 10ccs of blood then pull what they need for labs, a few times a day. Not forgetting the blood she lost while on the plasmapheresis. Later today they will give her so more blood. Ready for her not to be so pale any more. Funny I've never seen her this shade kind of fun. Used to be more blueish.

She just had a sponge bath and is teasing with the nurse sticking out there tongue out. haha theres my baby.

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.

Bubbles?

Mariska's chest x-ray popped a red flag.. Looks like she has bubbles in between her intestines walls down by her colon.. Not common with heart transplant but seen in immunosuppressant kids. Did a 2nd x-ray of the area. The GI doctor is coming up some time to take a look. She cant eat or drink anything until this is resolved. Hoping we cought it early and that will only be a few days and not something longer.

I'm hoping its just gas, ;) cause shes been very gasses. not cute little tutes there like some guy in the family *not saying names, you all know who you are. hehe* tough her how.

Now her catheter for her plasmapheresis has bubbles too! I mean really?!  The nurse got them all out and all is well. Phew.

Keep us in your prayers. All the news is becoming so frustrating, putting her back onto IV meds at least all the ones that can be given that way. Over all shes doing well.