cath/biopsy number 6!

The day before Same day surgery called and did all the pre paper work. Got a chuckle from some of the questions, havent been asked some of those in a very long time. The lady also asked me to list every med Mariska has been on for the past 30 days. Told her she was going to make me bust out the book. She laughed and said to bring it with us when we come in. They liked the printed med list we bought in with us. Love the small things that make everyone life better!  

My mom *Grandma B* got to come with Misky and I for this cath. Helps having someone there with you. Thanks mom for all the help! <3  I never sleep well on nights before we walk into PCMC ever that night was no different. That trip we had with rejection made sure I would never again. Maybe with time I hope.

Mariska was on the grumpy side that morning, Next time we take her to the lab we'll give her something maybe after she picks a toy. She wasnt to happy with me leaving her there. Breaks your heart to hear your child crying after you and having to keep walking.

Her heart looks awesome and no signs of rejection!! Takes such a load off my shoulders when we get a good report.  

No rejection also ment we could stop IVIG early!! cant say how happy I am about that. This months was going to happen at home. Which I was feeling uneasy about. Kind of like keeping the pain at the hospital and not having it come to the house.


Her docs didnt like the risk of doing IVIG again this month after some kids have had bad reactions to it. Mostly for the A blooded kids. *which she is!* there are to many A antibodies plasma in the mix wish can attack their own blood... shutting down other organs! yeah not want we want at all. Pretty scary to hear its happened to others.   She has had a really bad head ache about two days after each treatment. Last one took her almost a month to get back to her self. Think shes still feeling pretty crummy from it still.

Since her heart cath looked good and her echo looked the same also she got to come down on her steroids again. .4mls onces a day now. Cant wait until shes off this drug, and she can be back to her normal self.

Cant tell if its her meds that make her feel icky or if its something else like not being able to be around people being the social butterfly she is. She just hasnt been as happy. Kind of moody and unwilling to eat much.  Sam says shes eating fine. Think I got used to her eating like a teenager and its messed up how much I think she should eat. Making things fun and changing it up so she'll eat it has been tricky.  Today she did eat squash and a bunch of noodles. And didnt throw up!

She is still throwing up now and then. Mostly in the evenings after meds. some of them just are just plain nasty. I want my happy willing to take her meds baby back. Anyone mind sending that back?

Tomorrow she has clinic. Also a bunch of labs. They forgot to get some durning her cath..... ... ... Yeah I know. I beg for finger pokes. Heart momma's anyone else not liking the new lab drawing team?.. They stress me out.  I'll stop there, lol you all know how I feel about that place. Just has to be done.  

Heart Cath and Biopsy tomorrow.

Mariska is doing really well. She stopped throwing up once a day for almost a week now. Changed to anti acid med. As long as she has something in her tummy she's fine and dandy.  Over the moon that its not those bubbles again.

If you are willing, we would appreciate the prayers for Mariska and her docs tomorrow. Also for my self so I can remember everything said. Had a very bad migraine attack last night and just dealing with the after damage of a week long head ache.  I will post when we know results.  Borrowed a request from a friend to share also. I'll post it off and on all winter.


A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Mariska. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Mariska this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Mariska a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Mariska please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Mariska. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Mariska's health and in all honesty her life.

Halloween? is almost here

I posted most of Mariska's pictures on my facebook page. Dont think I'll ever get them posted onto here. Feel free to look at them if you want.

A little update.   *its a bit out of order thrid time trying to write this*
 
Misky had a clinic visit today. Just the normal labs, echo and check up. Her heart Looks and sounds perfectly normal.   Mariska Has been throwing up once a day, I've been hoping its just her prograf which will make you sick if its to high. Which it is. 17 Her normal range is 10-14. So playing with that again. She has lost a bit of weight. 11.95kg. Before her ER visit she was 13.3kg. Not so good.   We're playing with a few other tummy meds to see which will work better for her and putting asprin on hold.
 Her white blood count keeps dropping, which can be caused by two of her meds. which is a little scary seeing now thats all she has to protect her self from germs.
 She had a little to much fun in the echo today. One of her medical staffs *forgot his title whoops* did her echo. She was singing the whole time. Ha shes silly. He told her he'd look for some candy to give to her when he was done. Forgot and came back she looks at him and says "trick or treat" must have bribed someone cause came back with a yummy likely to be someones personal stash of chocolate bars. Silly girl.

Shes doing awesome other then the throwing up once between 3-6pm for a few days. Her glucose was a bit low but think all the candy she had today fixed that issue.

Dr. E is a little worried about doing IVIG again with Mariska. Shes A blood type and there has been some issues with the ivig having A antibodies. = liver kidney and other organ failure of things go bad!!  She'd turn yellow and be one sick kid. So after her cath on the 5th we will see if its worth doing.   If we did do them we have been setting things up with home health care to do them at home. Really hoping she doesnt need the last two.   She had a really bad migraine with the last two and maybe even 3 treatments which is on the list of a reaction so we'll see.

Starting to become angry with the people in the lab where she has her blood drawn... Tired of them blowing me off when I ask for IV team. blah. Guess I'll just have to be a mom there and just be forward.

Heres some pre Halloween pictures. We're planning to trick or treat at the hospital tomorrow, but heres the ones from today. =D

In clinic today they added to the system as Mariska "Strawberry Shortcake" Anderson. I love it. I didnt know this until the end. I was wondering Why so many kept poking there heads in to see her costume. =)

Mariska "Srawberry Shortcake" Anderson

Going to have family pictures done. Woohoo!!

Happy days at home.

Mariska loves being home. Able to run an play all day. Shes doing very well. Every now and then her little tummy hurts or gets upset but those are rare days. I still take her to PCMC twice a week for labs to be done, and once for clinics. Today she had a check-up. Her echo looks good, they are happy with it. Starting to think about changing to once every two weeks! but not until after her cath in two weeks. They said they'll have Mariska withdrawls. hehe. I'm sure we'll have the same but about them. But will be a much welcomed change.

We're planning to have her IVIG treatments at home! I'm kind of unsure about that. Kind of like keeping the painful things away from home.. but will be nice not having to stay in a small room down at the hospital. Her last treatment she was really good until about Saturday *treatment was on Thursday* She had horrible migraines you could just tell she was in a lot of pain by looking at her eyes. Poor thing. Those never come alone always joined with throwing up, Shes still not back to her normal self since then. Looking forward to our last treatment in December.

She came down on her steroids today again. Now at 2gm .66mls. *down .14ml since the last time* We've kind of grown fond of those little chunky steroid cheeks.

She sure talks a lot more now with this new heart. Picking up more crazy words every day. We can sit and chat about something. has made play time a blast.

Thanks for all the prayers and following us. *We have family photos taken last night so some goodies will be posted soon*

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.

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.