Oh Me Oh My. Please Please

Dr. Everitt came and talked to us about what the leaking of the Mitral Valve means, She explained that it is some type of Rejection of the heart  that is causing the Mitral Valve to leak and that we should hopefully find out what it is exactly Tonight when the biospy results come in.

The First Type of rejection that it could be is a cell rejection where the cells dont recognize the new heart tissue and reject the heart.  This is what we hope is the case. This is what they think it is so they are doing more steroids to stop the cells from rejecting it which means probably wont be out of here at least until friday.

The Other Type of Rejection is an antibody rejection of the heart. Where the antibodies see it as a foreign object and attack it. If this happens to be the case the with have to put her on a machine that is kinda of like dialasis that will pull the antibodies out of the blood.  We hope this isnt what is happening because she will have to go into the PICU again and for another week. Which will not be fun for any of us. 


So we are saying oh please oh please be the Cell rejection and not the Antibody rejection.


Thank you all for again for your prayers and support

Chest tube site.

Misky is out of the cath and back into the room and has some lunch. Her pressures are a little high, but are excitable for a newly transplanted heart. =)  While she was in the Cath lab they did an echo and put in a PICC line-yay for no more pokes!

Bonnie Clay looked at her scar and her chest tube wound. Said her scare is healing wonderfully. she put some strips on her tube site to hold it until she came around later. Leaked and they came off. ugh.... she stopped by the room and put a bandage on which is almost ready to come off. Really hope its just the fluid around her heart that's finding a hole to leak out of, We ran into Dr. AK on the way to see Misky in the PACU. He said hes not to worried about the leaking, and basically said the same thing. Hes going to stop by and check to see what it needs done and if the Wound team needs to come and help it heal.     looking like an open half an inch open wound now. =(

Shes on a new steroid drug, not new just back to the IV because her Mitral Valve is having some leaking issues, hoping they can get her blood pressures down a little to help. Also maybe a sign of rejection. we'll know more when the labs ...are done.


 Busy morning. 

Pictures. =)

Welcome to Misky's bubble.

Ready for a ride!

Her Piggy breakfast.

Her Poster!

Just starting her painting. Thanks Kids Crew.

Today. Playing with Daddy.

This is what I get for saying Misky give mommy a smile. hehe

Sounds like her Cath will happen around 11. Just takes a few hours. They have to go in from her leg, becuase she had some repairs done to the vains in her neck.

Her weight has been all over. checked in at 12.2. Onces we got to the floor she was 11.7. Few days she was 12.1.  She should be packing on some weight with all the food she's been eating =)

# 1 heart biopsy

Misky has her Cardiac Catheterization around 11:30-12. Keep her in your prayers and cross your fingers and toes there's zero rejection. Also that her chest tube site will stop oozing and heal the way it needs to.

Time for rounds. The pedi cards say they heard a low pitch sound... hmm guess we'll learn what that means after the cath? *bites nails*

Mariska is happy when shes not thinking about how badly she wants a drink of water. Tricky to keep someone happy when you cant feed them.

How many doctors can fit into Mariska's room. ;)

Misky is still doing well. Think she misses a full good nights rest, as do her parents. Mariska is eating more day by day. Today I didnt think she was going to share any of her breakfast! She ate her bowl of fruit loops, then I ordered her french toast sausage, a plate of cut.. diced fruit and a blueberry muffin. She did share everything but the sausage and fruit loops. hehe. What is she doing to do when she comes home and its no longer a buffet of everything she likes.

Last night wasn't as bad as the few before it. Just had her nurse in and out all night waking her up for meds, vials, poor thing went to be very late. Shes making up for it now by taking a nice nap.

This morning she had her blood labs. Took them a while to find which overly poked hand would be best to add another poke. Once that was done she headed down to x-ray in the wheelchair on my lap. Think she enjoyed the ride the most today.  Then came back feel asleep for a 20mins. Time for meds and blood pressures, O2 stats and the rest to be checked. Visited with Dr. Laura stopped buy and talked to us. She said we're just hanging out until she has her Cath on weds to check and see if cmv is really a risk or just a saftey step.

We changed some of her meds around. I'll remember the names better when I see the labels more often. Shes off of zantc and on something else like it. Silly drug should help settle her tummy but it just makes her well you know empty it. Shes also only on one IV med now. Just the one to treat cmv. Shes on a better time schedule now. No more 2 or 4 am meds. YAY!

She had an echo today. It looks good still a little bit of fluid and one of her valves looks like it is having some leaking.. we'll learn more about that on the cath.

The pedi cards came by.. all erm 6 was it? then followed by her transplant team. I was getting nervous seeing all those people standing out side! about 9 with the team. It was very overwhelming to say the least. Dr. Everitt is back from vacation now, so we got to see her again. She shes concerned about the fluid so we increased her lasix. She also said the CATH will be tomorrow.

        And the word HOME maybe weds! back on friday for clinics or home on Thursday and back for clinics on monday. Just depends on what the biopsy shows. time to bite nails.

Misky is still fighting taking her meds. some of them are down right nasty so I cant blame her, but its something she has to take.

Thanks for all the support!

Oxygen Stats, and picture heavy.

Lost track of the days after 4Happy Birthday Sam. He had his party in the rainbow cafe. Misky and I had cake later. haha they bought him a "I am Sam" bag. Just in case he forgets who hes is. ;)

Day 4First time Daddy got to hold our baby after surgery.bad pic, making her get up and walk. She wasnt to happy about it,Pfew the reward was to ride in the wagon around. Playing with puppies in her bed. After her last chest tube came out. She wanted to walk. Think she just wanted the rest of Sams donut, hehe.Feeling up to playing. Her with all her babies. =) Dr. K wishes he had that many toys as a kids. Misky was pretty excited to see her "Meko" Being spoiled Playing with HaileyAfter all the failed pokes. Warming up her hands and feet with hot packs. She didnt want to take the one off her hand cause it would get cold. Being silly taking pictures.

Last night we winged her all the way off of Oxygen.! She no longer has a leash. Might miss that thing, always came in handy when I went to see which room she ended up stopping to play. Her O2 stats stay around 99. Such a beautiful number.

After Mariska got the middle and last chest tube out not even 20mins later she said " I want to walk" That thing made it hard for her to do anything really normal like taking a deep breath.

Misky was pretty happy most of today, until she wanted to take a nap and it was time for vitals. She made me laugh all of yesterday and today. Everyone who'd come into the room and not hurt her she would say "Thank you"

This morning wasnt the best. Forgot to add I only want the IV team to pull her blood, so philbotimist came in to draw some labs... they have never ever! been able to get her vains or get lucky fishing around in her arms for them. So he thought he found a vain poke.. nothing, then starts the fishing.. nothing... goes to the other arm does the same thing, I had to tell him he has to stop or I'll loose it. good thing dinner was hours ago. blah. Then IV team came in and put a new IV in her foot.

Later the iv in her hand blew out and had to be removed, so we got lucky she had the one in her foot. =) yay.

The Surgeon's team is passing her to the cards. Which means shes stable enough to not need to be under Dr. Kaza's direct care. Awesome. He'll still check on her but shes not as high on the list =)

The new doctors that are following her now came by. Asked some questions for their records. Like did we know before she was born and all that good stuff. Dr. Laura said something that really peeked my interest. She said she was reading Mariska's charts and saw her donor heart said it is possibly has CMV but isnt for sure. She was going to check and make such which is it.  If the heart does test positive for cmv she'll stay on IV antibiotics for 2 weeks -so just one more to go- crazy now my mind keeps playing with the idea of going home sooner pfft. silly me. only time will tell.

They are talking about doing a PICC line (IV from the middle of her arm to the top of her heart) if we're planning to be here longer then 6 days she'll have it done. It will save her arm from needing pokes every morning and the about every other day new IV line.

Everyone here keeps saying shes a really smart two year old, and understands a lot of whats happening to her. Shes started eating pretty well, now we need to work on getting her to take her meds by mouth better. Some of them are just plan nasty. She'll learn she has to take them, Pray its sooner then later with us.

Its nice seeing her so colorful, and my heart is filled with gratitude towards the donor family. Because they gave their child's heart my daughter will live a healthier live. Words can not express how we feel. We keep them in our prayers daily.