First meeting with the transplant team and new drug.

Sam got a call today. He gets all the fun calls from doctors. It was Doctor Everett. Mariska's soon to be new transplant card. Saying they want Mariska on a new blood thinner called Lovenox. Because her heart function is so low that they are worried about blood clots.

So IHC home health care dropped off the goods and a nurse came around 8 to show us how to administer the new drug. Lovenox main side effect is bruising. This medication is given via shot. We and every 12 hours. The nurse came over taught us what is needed to do it. Then it was mommy's turn. Cant say I'm looking forward to sticking her twice a day. But its better to be on the safe side. It wasnt as bad as I thought, and I can and will do it. *huge pat on back *

This call was the icing on the cake. Sam and I both finally let out the stress this is bringing. Now off to the update from the never ending day




Yesterday. First up was check in, not painful at all. Chest x-rax Misky doesnt care for, but we think its just having to take her shirt off in front of others. ;)  Then back to cardiology, Finally off to her ECHO. Mariska doesnt like to lay down but with the right bribe she'll do anything. this time was 3 suckers and a blanket. She layed still for the full 45-60mins. WAY TO GO!!! She did super!
  Then waited to meet with the dietician. Not sure how to feel about that one. nice lady, but nothing like pin pointing everything she eats, and being told the good old your child needs to drink more and eat more do you starve her?? kind of feelings. But is a much softer way. Mariska has been around the 25% mark most of her life. =)  But we want a bit more fluff on her you can say so she is on a high protein high fat diet. Wish I could help her out on that one. hehe. So lots of expensive milks, ton of butter on her toast and cream in anything I can hide it onto.
  EKG/ECG was next. Along with the normal check up, Blood pressure/ O2 stats. The nurse was really cute and played with her making it a lot of fun. Nice when she doesnt know you so the chance you'll stab her is low.
  Then the next few are kind of jumbled. Linzeys fill in errm forgot the name, came and talked insurance and cost with us... dun DUN DUNNN.... Mariska has full coverage with medicad. We're so thankful to all of us hard working tax payers. =D  Anywho she had the numbers down to the dollar dare say penny if we looked close enough. And Yikes!! The ending number is around half a mil.. pfft its nothin. but really WOW. still rubbing my eyes on that one.
  Dortor Everett was next. She is really nice. for some reason Sam and I both we're thinking a man, but nope shes a cute tiny lady with a heart of gold. She checked out misky she gave us the skinny/basics about everything. To many things to repeat so I'll touch them as time goes on.

 Sam's dad came to take Mariska home, just as they got her into the car I had to call him and say hey guess what we need her back... forgot the blood draws. So off to the lab we go. yay for Patrick, he didnt do it but helped fill the 2nd tube. Hes our favorite. Only person who was able to get Misky's blood on the first poke.

Now she gets to go have fun.

Into the meeting room we go to talk with the pharmacy pharmacists peoples. She went over the different drugs want they do and risks with using them. The first few main drugs are to crash her immune system to help stop rejecton. Then theres 3 or 4 to help with each side effect of the main drugs. Told us the risks of her getting cancer because of some of the meds. One is a blood cancer. After transplant cancer errm something like unto that, and the other one is skin cancer so she'll have to keep her skin covered with some nice SPF, which we do anyway.

Then lunch at the rainbow cafe *cheers in the back ground*

 Back to the meeting room to talk to a social worker who tries to find out all your families dirty mental history past. Ok so its not dirty but was interesting. my favorite question was how is your relationship "rock solid.. with a few bumps* HA I crack my self up when I'm sick.

Finally back to meet with Emily the transplant coordinator who has poked her head in here and there. To go over everything else that needed to be covered or answered.  Didn't meet with the transplant surgeon but thats ok I'd rather see him when I'm not sick =)

After it all we took misky to get a monster ice cream from IceBreg's. Think we're still feeling the tummy aches from that one.

Shes not on the list as of just yet. Still some hoops and rings to jump threw. Dr. Everett is going to present her to IHC/all the transplant centers/doctors on Tuesday and then she'll be presented again to the good doctors at PCMC. We should know by Wednesday where she falls on the list (heres the break down A1 sickest of sickies, B1, 2, and then 7 on the list but cant get a heart sick or something else keeps days on the list but doesnt gain anymore while in that status)

Thanks again for all of your prayers and comments on the blog and on facebook. Its nice to know we're not alone and have support others.

Here are some pictures =)

She loves taking pictures. =) Good job Misky.

6am in the check- in waiting room

Recovery


Daddy (Sam) is a fly Fisher. I felt the need to inform you all of this. =D

Another big day tomorrow..

I've put off on making this post for much to long. Heres a fast update to get you all up to speed..


Mariska did Super on her cath. She was happy all that morning, playing with the hospital toys in the waiting rooms. When it was getting close to her turn they gave her a liquid sedation drug. That made her have the super giggles. We walked her back to the cath lab, handed her over to the staff. This time is wasn't as hard with her giggling and being silly.

We waited for about 2 and a half hours when the pager went off saying she was done. Talked to doctor Day on how the cath went. It went smooth. The leaking in her tricuspis *sp?* value he said was mild ( the last echo it was moderate/sever) YAY happy news. Dr. D said there's the a list of 10 things that have to be just right to have the Fontan, he counted 5.. but the cards worked it to get all 10!

He had to go in via the leg artery and in a vein on her neck ( we had forgotten I guess that they took a vessel from her to rebuild her aorta. ) to gain access to every part he needed to check. Said her lungs looked much better then most. Pretty exciting seeing how she had a partly paralyzed diapram after the norwood.

The nurses in the cath lab said she was so funny and wanted her to stay there all day and play with them. =) shes such a people person! <3

Now on our way to recovery. Hard to keep a 2 year old still and not bend there leg. That was a bit of a challenge. Lots of popsicle's ice and anything else she could find to keep her entertained she used it.

Dr. William's came by while in the recovery room (very glad he did, took off a few hours from needing to go down and wait in a room) said he wanted to talk With the board and see how everyone else felt. He presented her that Wednesday... and got back to us.

Now your up to speed. Doctor W called and said they feel TRANSPLANT would be the best thing for her.

Thank you to all of you how fasted and prayed for our family. It has brought so much needed comfort and peace to our minds. The past few weeks have been a roller coaster on emotions. Posting it here felt as tho it is so official. and I've been in half denial about it. Just thinking the word transplant brings a wave of emotions down.

We trust her doctors that this is the best thing for her.

Tomorrow we go and meet with the transplant team. She'll have an ECHO at 8 then she'll have some blood work done. She doesn't have to stay until 4pm with us, So Sam's dad is sweet enough to take her while we're in meetings. We're so blessed with such loving family and friends.

Please pray for her and us for all thats to come. also for misky and I to get over our nasty coughs.

Love Melynda, Sam and Misky Moo

Cardiac catheterization tomorrow.

AKA heart cath. Boy oh boy the day is almost here. We've prayed fasted, and prayed a whole lot for things to go well tomorrow. The cath part in its self to me is the least of the worries. Its the news coming after it.

Pray for her that the news is good, and for the cath to go smoothly.
For those of you who have talked to me today, I must say I'm sorry for being such a nervous mess! =) haha

Her Cath is set for 7:30am. We'll be there by 6.

No slumber parties at PCMC for Misky tomorrow. =D yay. Just need to hang around for 4-6 hours after then we're home free. I'll update tomorrow again on how it went.

<3

Easter Fun!

Growing baby watermelons. Planted them on Earth Day and here's how they look now.

Mariska so wants to go swimming. put on all the old swimming suits and walked around the house asking when it was time to "kick and kick in the water"

Car ride to Idaho. She needed a nap but didn't want one. Had to show off that bottom lip.

Life threw the eyes of Misky

Silly girl playing with the camera again.

Sitting with Grandma & Pa Anderson's Cat. She is the biggest animal lover in the world!

Sleepy after a wedding being silly for her grandparents.

Little miss I believe that is your zipper.

Easter morning. Yeah candy for breakfast wasn't the best way to start that day.

Easter Egg Hunt at the city park. Boy was it cold that day. At least the 2 feet of snow melted.

being the wonderful helper she is, returning the plastic eggs to be used again next year.

Easter egg hunt at Sam's parents house.

The Three youngest girls. They sure did get a ton of candy.

All the girls cousins.

Coloring eggs. She was so proud of her eggs, everyone who came over HAD to be shown her Pretty pretty's.

I'm so grateful for my wonderful families. We have been so blessed with people in our lives who truly love us and would do anything to help. It means the world.

Mariska has her Cath this Friday the 7th. We're planning to fast weds-Thurs. Anyone who would like is welcomed to join. This cath will tell us a lot. Will she be able to have the Fontan, or need a transplant. Its such a sickening thought going to the hospital for either of those. Mariska is in the Lords hands, I have faith no matter the out come she is taken care of. We'll need lots and lots of prayers on Friday. =)

Her new favorite movie is The Incredibles, haha I have no clue why. Silly girl. So full of life always giggling or making silly faces. She knows what she wants and is able to sweet talk her way into getting it. Every night she says her prayers I want to record what her sweet 2 year old words. We help her get started then she takes over with: Thank you for papa and Blix (my brothers huge dog) And the bite ( my parents dog bit her finger a few weeks back) and water and kick and kick. Then a few new things every time. Goofy. I've rambled on enough.

Hugs Melynda

Hope you enjoyed the pictures

March's Echo Brings heart cath.

Having fun at the park. YAY for warmer days.

Weeeee playing with the bigger kids. she loved this thing.

At the Jazz game with Grandma! (DeNece my mom)

Walking around

Washing toys

Whoops didnt see her put him in.

Poor wet Elmo

She was so proud of her Duck feet.

put them on all by her self.

cooking dinner.. Think we'll order pizza today.

This is what we found after she played with the camera.

Mariska on Valentines day. =) The ballon was Elmo her love.

Mariska had another ECHO today. yeah 2 in 2 months. yikes!

This one she got to stay awake for. She didn't want to lay down, but they talked her into by giving her two suckers and a stuffed toy kitty with the help of bubbles. Gotta love the things you do to get a kid to told still.

On the way to the hospital misky got car sick... yeah if you could smell us while we were there I apologize. bleh. She told the echo tech how she got sick in the car and made it stinky, or so we gathered from her half jibber jabber.

After the echo we Met with Dr. W. He said her function hasn't in proved or really even changed. Which makes him very concerned. -not something one likes to hear for anyone- so we're looking at having a Heart Cath in 6-8 weeks. To see if shes improving or not. Her heart function is not the best so after the cath they will talk as see if she still a candidate for the Fontan (3rd heart surgery) or if a Heart transplant would be better...

That's right... Transplant.. please pray this can be put off for many many more years.

Took everything I had in me to keep the worry off my face. Its to early now to say whats to really come but what ever it is will come. Mariska's O2 stats were the highest they have been for a year! a beautiful 81. Shes still very active and has great color. We changed some meds and amounts, And hope to see improvement when the cath comes.

After the visit we had lunch at the Rainbow Cafe. That place sure has a soft place in my heart for lunch.

We have faith what comes we will be able to handle by turning to the Lord. We're very full of hope and love things will come out fine.

Love Melynda