Thursday, June 3, 2010

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.

4 comments:

Hope's Blog said...

Praying she is listed soon. A new heart is so very special. God bless!

Liam Lockhart said...

Just got your message about Mariska! I am praying for you guys!I know your are besides yourself and i know that Mariska will soon get on that heart list and do STELLAR with her transplant. She is an amazing little girl.
Liam had his Cardio appt and was suppose to have surgery this summer, but we have big problem, my family will be gone this whole summer and i have no one to watch my 4 other kids!!! So his surgeon said that Liam can wait but to watch him since he has slowed down a bit and watch, he isn't happy about it but said September is his surgery.

One Happy Heart Family said...

Okay that was alot! LOL sounds like things are going good and your getting it workded out!! We are constinatly praying for you guys!!! Let me know if you need anything??? XOXOXOXO
Chrissie

being sick sucks you miss out on everything havn't check blogs all week :0)

Mike and Rebecca said...

We'll keep you guys in our prayers, If there is anything we can do please let us know.

Thoughts and Prayers,
Mike Patton
IHH-VP