Sunday, June 27, 2010

The call

Got the call/page from the transplant team yesterday around 4pm yesterday. They had a potential donor! a perfect match for her. <3 Sam was just getting home from fishing, Misky and I we're out shopping. This might be a watered down version so forgive me for the mess I'm about to write. ;)

Walked up to the PICU then down to bed 2506 around 5. Hooked Mariska to all the standered monitors. Pulsox, blood pressure, heart leads and an IV. She was super good. Laughed and played with the IV team it was pretty cute. She wasn't such a heart poke being on blood thinners might have helped there.  Talked with most of the picu doctors, then waited for Michelle from transplant to come up and go over the last paper work for us to sign.

Then met with Dr. Kasa *the surgeon* He is such a pleasant person to talk with. He looked at her ECHO and said it gave him chest pain looking at it. ( she is very sick in the inside) He walked by the room, had Sam get me and told the nurse. Are you sure thats the right kid?  Shocked at how well she looks and is very active. Not what he thought he'd see that based on her echo. Said shes the best Hypoplastic he has EVER seen! and ever has pink lips. =)  That is what prayers from all over the world can do. Shes a miracle!
He went over the risks on surgery with us. Said she was 3rd on the list. He got number 2 to back down, they took the bait as he put it. lol. The 1st in line was Standford's little one. Just waiting to see if the size would be ok.   Recovery time looks like 2 weeks in the hospital. (kind of shocking was planning for a month yay!)  Dr. K went over pretty much everything.
My dad wanted to know if we could keep Mariska's old heart ( joked about keeping it over the fireplace or in the meat draw to make my mom crazy. haha love my dad.) He looked at my dad and said "I think you've had to much sun" Think that took the rest of the night to gather that was a no, you dont reallly wanna keep it/ yo crazy! lol at the time it felt like he was just changing the subject. ROFL. He did say how ever he would bring her heart in for us to see!

Around 10 they said the other team is taking the heart. All the doctors said they we're sorry for all the trouble and she didnt get it. Also thought it would be pretty amazing for a lv 2 and only being on the list for less then 3 weeks to get a heart that fast!  Looks like 4th of July will not be viewed form the "house on the hill". We're doing ok with it all. Feels like maybe to ok with it. Wanted to go camping this weekend while we can. =)

Thanks for all the prayers!!  I update more on facebook added a tag. Your more then welcomed to get more of my thoughts there.

Hugs Melynda and Family

Monday, June 14, 2010

Happy News.

Had a check up at PCMC today. The team wanted to check her weight and see hows she's doing over all. Shes still on 1/2 liter of  02. -Which has made a world of a difference. Shes back to her happy bouncy giggly self.  We met with Michelle and Emilee they checked her O2 stats76-80 better then the 69 last week. Checked her blood pressure and then off to the scale.

Shes gained 2 ounces in less then a week. She has been a nonstop eating machine!! Granted most of it has been breads and junk like chicken nuggets, fries, pizza donuts and a few CupCakes. Lets not forget how much everyone spoiled her this week =).  Gave up on veggies this week just wanted her to gain some weight. Looks like it payed off. Now back to eating the green stuff.

They talked to Dr. Everett who was pleased with her numbers. Said they didn't want to admit her today.!! YaY!! Soo happy shes doing well enough to be at home. We'll go back on the 1st of July for her "in a month check-up"

Thanks for all the prayers for our family. <3

A heart momma friend of ours took our family photos this week. Thanks so much Lori!!

Wednesday, June 9, 2010

Listed Today.

The Heart Transplant Team called. She's on the list =) Status 2.

Thanks for all the prayers <3 <3

Pictures. =)

Mariska wearing the holter monitor and being silly.

Our day at Thanksgiving Point Farm Country. She thought the pony ride was Awesome!

Oh the new things that have come to stay.

After the last visit to PCMC we thought we we're good on visits for a month or unless an angels heart.
Well thats not the case. Felt odd not to go there for a month! Seems we've been there every other day and if not there we're on the phones with the transplant team. Its going to fast I say...going so very fast, but maybe thats a good thing??

So we find out sometime Today where she is on the Transplant list. *bites nails all day*

Back to the no visits for a month. Well Dr. Everett and the others looked over her ECHOs and didnt like what they saw. Also looked at her blood draws. Her Red blood cells are high. Which means her body isnt getting enough oxygen and is trying to make up for it. *more work for her heart* So they called and said they want to put her on Oxygen.   Any one wanna chase her around with a tube? lol its lots of fun some times!

They also said to come back in on Monday. *feels like I'm was just kicked* They want to weigh her again and check her red blood cells.... And if she hasnt gained anything or lost She will be admitted! Yes Admitted to PCMC. With IV drugs.. SO we'll be in the wonderful ICU. This is a pretty sure she'll be there on Monday.. and doesnt come home with out a new heart. This will put her to the top of the list. trying to think of it as a blessing.

Its all moving so fast its hard to take it all in. Yesterday was another extremely hard day for Sam and I. With lots of tears. Seems as though we never really understood just how sick our little ones heart truly was. We're in the dark no longer.


Thanks for all the kind comments on facebook <3 Melynda

I'll post again later.

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.

Tuesday, June 1, 2010

Here are some pictures =)

She loves taking pictures. =) Good job Misky.

6am in the check- in waiting room


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