New plan :)

Rejection still, biopsy 2

Mariska had cath again November 20th

6am check in time is the worst part, but finding the results that day makes it all worth while. She went to sleep talking to the anesthesiologist  about his dog and what tricks he can do, ha he can tell time. Breakfast time and dinner time. Was the happiest I've ever seen her for a cath.    This one was smooth and she finished early. =) We played noisy games in recovery, until the kiddo next to us stopped crying then read books until she was ready to go down for clinic.

After the IV was pulled TX team told us not to pull it.. bad sign when that happens.


Mariska's heart chamber pressures are still extremely high,  TX said over all some numbers went up others down so they called it the same as the last one. boo hiss. They debated about admitting her again for another round of IV steroids but decided she could just go back up on the dosage at home.  She did go to school for a few days with her big 3m green mask on friday. but then missed all the next week (short week)

Her teacher sent home a bunch of homework and books to read and pass off. She was excited and read them all before we got home. She is starting to LOVE reading. I'm proud of her for her desire to learn.

Her cath showed rejection this time.

C 2.5 V2 ISHLT 1 PAMR 0

Still Cellular rejection. (if we had to pick a rejection to deal with it would be this one)


Last week she had labs. Her Cellcept (anti rejection drug she's always on) Didnt even show up in her blood. Now we're a bit worried. So rised that along with prograff her other main drug. Hoping they have finally become stable.

I looked at photos of her when school started she has changed so much! I love her chunky cheeks but wish it was back to normal again.  I tell her every day I love her cheeks and I wanna squish them. She'll look at me smash them together then pinch them for me. HAHA love her.

She had clinic yesterday Her heart still looks great! but her neck you can still see the vain pulsing telling us her pressures are still scary high.

One the 16th she will have a full cath (the enter in two places, and has to lay flat for 4-6 hours after. They want to check her pulmary arties and make sure they are still doing ok. The worry about those if they become damaged it would mean another transplant sooner then later. SCARY stuff.

Mariska's weight has been intersting. When she got sick her low was 37lbs now she's almost 52lbs!

We had a great Thanksgiving with my parents brother and his girlfriend. It was small and not crazy like most years. There is not a day that goes by where I dont think of Mariska's heart donor and their family. Their gift has let me have so many wonderful mermories with my sweet girl. They are always close to my heart.

Thanks for all your payers, wishes and thoughts. They have helped calm sole and have peace in my heart.

Cath lab

Mariska had her surprise cath today. She went down at 9:40. She's in recovery now.

Dr Day said her pressures are bad.

Will know this evening the results of her biopsy. To tell us what level of rejection.

She's did great. They had access from her neck, and didnt need the groin site.

We have it early. means less damage to her heart.

Keep her in your prayers please.

Rejection still going on...

Mariska had a Heart cath yesterday morning to find out if her little body is still rejecting her heart. She was first case, makes it easy on keeping her tummy empty but not so easy to get out of the house at 5. Yesterday feels like a blur, Sam and I both didnt sleep well between the stress and the scary lighting storm.

  Mariska was scared the night before. We talked with her for over an hour listening to her fears and giving her comfort. Her biggest worry was mommy why did they take off my panties!  *last time they entered the leg artery and the neck* Poor kid, At only 3 she is so modest.

We took her down to the cath lab, she cried but still went to the nurse. When we went down to talk to the doctor the nurse said she was super brave. Asked for a tissue wiped her nose, layed down covered her eyes and said she was ready. Moments like those break my heart to see her having to be brave. She didn't have any trouble waking up, she was up drinking water and juice ready to get out of there. And very happy they left her pants on. They tell us it will get easier.. I'm sure with time it will.

We found out her chamber pressures inside her heart are higher then her last cath, but still with in the normal range. *numbers went up by 4 in almost all 4 chambers* They did an echo while she was there also. Her echo also shows her valve is a little worst.. but also still in the normal range. Little changes like those pretty much mean rejection.

We went down stairs to talk to the transplant team and find out what Dr. E had to say.  Mariska's prograf level was low again! after being stable for 2 weeks. They bumped up her meds again. .9mls x twice a day. Hard to think less then two months ago she was on .4mls . blows my mind. We needed to wait for the biopsy to come back to find out if it was indeed rejection still.  I didnt want to ask, but finally did. What is the next step to treat her rejection. Praying it wasn't going to be head to the CICU for plasmapheresis or ivig. The first one still gives me chills and nightmares, Its a beast to put it lightly.  Told her if it was that I was going to break down right then and there. She said no, and if she needed it she'd be crying also. They said the changes came when she hit the half way mark on the tapper off her steroids, so it would be likely to go back there and hold.

They called a few hours after we got home. Home what a wonderful word. Said she was still in rejection, forgot if it was mild or moderate -forgot which it was a very long day. Said to bump her pedisone up to 1.6mls twice a day.

She has been putting on a lot of weight. checked in at the hospital at 15.5kgs. two months ago she was 13.2kgs. Shes our little fluffy marshmallow. To think 7 months ago you could see almost every bone in her body. Sure has come a long way.

Now we sit and wait praying the rejection goes away. Its hard not to miss doing normal things, going places like the store as a family, swimming, or church. It is draining, thinking about should we go to the park.. will there be someone sick? will she pick up something? Sometimes its easier to just stay away.
She has talked about going to Disney Land once a day for a good month, and is getting excited to go next year! She also cant wait to be a big sister. 5 more weeks and shes not the only child anymore.

Echo looks good. Day 4.

Today has been a slower one. The transplant team has clinics on Thursdays so they are super busy.  Mariska's Progaph is still low!! Shes getting .6ml and came in at .44mls   That's a huge increase. Shes getting .7 tonight with labs on Sat and clinic on Tuesday and more labs. Her level was 6.4. Still below where they want us 8-10. Next year she'll have the target of 5-8 but thats two years post transplant. Sill kid. We are all waiting for her levels to jump sky high, but nothin. They keep asking if we filled her meds here, if we get her labs done here. Nothing has really changed other the she got sick a few weeks back.  With a double ear infection. But no big changes.

Shes so done and wants to go home. As do Sam and I. Its hard being in the hospital never being left alone, becomes bothersome. Plan is to be discharged here in a few hours, hoping her meds will be ready for us when its time.

We had her echo just after lunch, They came to say it looks better. Wahoo!!  When her body rejected her heart, which we think since her prograph level was so low, it attacks the heart valves. Her tricuspid went from mild to moderate.

We're looking at being on steroids for a month, with a fast taper off from them. That's what we're praying happens.  Mariska has fallen in love with the place called Lagoon. She calls it her adventure rides. Hoping she gets to go a few more times before the summer is over. Who would have thought the kid who is scared at the play ground loves theme park rides.  She is very excited about her little sister who is coming. Only 9 more weeks! We're super excited.

Thanks for all the prayers!

Post 200, Oy! And an update.

Just when I thought everyone wouldn't remember us, They are proving me wrong.   morning snack lady remembers us, The cleaning lady remembers. Cindy from parents resource remembers us. 3 nurses have stopped us to chat. Oh and cant forget our buddies with the IV team. Made a new friend. The garden lady, she let Mariska help water the flowers and borrow some sunscreen. =)


Mariska's Prograph is super low, STILL. They want her to be 8-10, Shes been around 6 for a few weeks. Last few times she was 4.5, 5.3, 5.6. Just slowly going up. Thursday we changed her dose from .45 to .5 Her level only went up .2!   Few months ago if we moved it more then .01 She would go super high. Now we cant get her with in range.   She'll be on .6 tonight. That's the highest. Shes also put on some weight. Over 31lbs now. The steroids have started to take effect, for the first two days she was a starving child who ate everything, was eating more then me. Last night shes starting to get the "round face" her meds make her a little chunky and makes her cheeks huge.

She tested positive for Herpies from the labs with her biopsy. *aka cold sores* Guess it showed as active and not something that has just been around in her body. So the test is to find out if it is an issue. At least that's what I think. Asked what the risks are, was told it can effect the liver and eyes, but if it was she would already be showing it. I'm praying it wont be a problem, more so since I think if it is she has to be on the vain eater meds to fight it. ugh.

Doctor E. just came in, Said we're still on target to go home tomorrow. She'll need an echo labs and her last dose of iv steriods.   I need to find a time that works better for her on meds. With out risking if she wants to sleep in it doesnt cause troubles. I havent been so good at getting her to take them or giving them right at 12 hours apart. Something we will fix.

Gave her a new IV today. Got it on the first poke. yay!! only its her right hand so she cant color or eat very well. Made us feed her half her breakfast. Hard to wash hands with in iv too.

Thanks for the prayers and support. <3

Rejection.. One year ago to the date Mariska was given the gift of her new heart

Dont want it to be true, would do anything for it not to be so.. Mariska little body is rejecting her heart. The good thing about rejection is its treatable. Shes back on steriods again a long with a handfull of meds that come with it. Good bye just two meds and hello 8?   

She is in Cellular rejection level 4. With level 5 being the highest. Scary thing, this could have gone unnoticed for a while. Her body hasnt shown any signs of being affected.  Counting our blessings we are able to get on top of this early and prevent any damage to her heart.

The Test they ran this time showed 130 rejection. For most people rejection happens at about 100. Last year when she rejected she was 2,500. Not fully sure what it means, just know its the way the body shows its being attacked.


Mariska did awesome today. Only in the Cath lab for an hour and half. Was scared in the recovery room but was calmed when she saw Sam or my self. Understood she had to lay flat for 4 hours! like I said shes amazing.  They had two failed ivs one in each hand in the cath lab *iv didnt hit a vain or wasnt able to find one* We pulled her iv in her foot before we knew we had to stay. Then another failed on in her hand Finally found a vain in her left hand for her new IV steriods.

The game plan is to give her 6 treatments of mycofentale sp * just to sleepy to care* her iv steriod. They are every 12 hours so we should beable to go home thursday afternoon. 

The effects are already showing. She is STARVING. I can understand now why parents of teens with transplants have to lock the fridge. Nothing is able to fill that hunger. Poor kid. Guess I'll make sure she gets lots and lots of vegies in, haha. 

Thanks for the prayers. We find out if this treatment works in 1-2 weeks with another cath. Praying it stops it and we can start to get off meds again.

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. =)

Rejection

So here I was thinking oh today will be easy *no pokes or crappy news* This morning they went to pull blood from Mariska's PICC line *yeah the one in her arm to her heart* they flushed the line then went to draw the blood got the waste blood changed tubes and then nothing, couldnt get anything from her line, grr so we flushed it again the nurse said maybe they will be ok with just using the "waste blood" looks like its been ok so far. The nurse said it might just be a flap at the bottem opens when you push something in but closes when you go to pull.. kind of like a one way door?.. we waited a while she came back a while later and it works fine now. Phew!

During the while I talked about above, Misky went down for an echo. The nurse asked if she wanted to ride in a wheelchair or in the wagon, she picked the wheelchair. She found a peds one. That was SO stinking small and cute. Think Misk was sad she didnt get to ride with me like before. But soon got over it.

Her echo was pretty fast about 15mins. Then we came back up to the room. Childlife popped in and Asked if we still wanted some tips to get misky to take her meds better. She'll come back later today, and make a hospital buddy doll with Misky =).

Emily one of the transplant cords. Called and wanted to come up and go over some discharge training with me and to set up a time. Ended up having Misky's echo fall into the middle of it so pushed it back to 2.

Then She came up to drop some news... ready? cause I'm still not. Maybe its not to bad and its just the straw that crushed the camels back.

She said Dr. E and another Doctor looked at Mariska's echo dont think its better or really worst. Which means the nasty immunosppressive steroids arent taking care of her Miral valve.. And that they are going to start her on a a new antibodies rejection ivig drug. She also said they know the donors antibodies now and can treat with the IVIG drug.

The IVIG drug is a very slow iv med with a lot of allergic reactions so they have to give her Tylenol and benadryl to prevent it from flaring up. And that we're not going home tomorrow.... looks like after Monday or Tuesday.. They want to do another biopsy to see if this drug helps her heart or not.

If you still wanted to send a card might as well. We could use the good vibes our way. They can mail them to our house if she's home when they come. 

Thanks to all of you who have sent a card or comment =) nice to know others are following our story and for all the prayers.   I'll try and post some pictures later. The steroids have made misky's cheeks look huge. thought she was just putting food into her mouth keep it like a chipmunk. HAHA Love those cheeks. <3