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.