We've been home since the 24th =) After picking up Mariska's Grocery bag filled with all different kinds of meds for her -yeah there's really that many! We waited for the discharge paper work and to be retaught what signs of rejection are and checked off her 12 meds.
This is what we came home on:
Prograf x2day,
Cellcept x3day,
Orapred x2day,
Septra 3xweek,
Valcyte x2day,
Nystatin x4day,
Asprin .5day,
Lasix x2day,
Diuril x1day,
Aldactone x1day,
Prevacid x1day,
Magnesuim 2tablets day,
multi vitamin.
Its just a tiny bit overwhelming.
Mariska is doing awesome! She begs to go to the park and play. If there are other kids she has to wear her mask which brings over a group of them to ask how come she has to wear it. =) She very good at leaving it on and knows when it can come off. Shes picked up a little more attitude now, HAHA just beware she's always known how to get what she wants so that hasnt changed. Shes also so much happier. She used to have such a cute girly laugh now its a belly laugh at everything! silly girl its still cute. Just with more soul.
We had her first post transplant out patient visit on thursday. makes for a long morning leaving the house at 6. She did super. Didnt cry after the blood draw.. something kind of wrong with that! but I'm very proud of her for being so brave. Awesome durning the echo but thats normal. Had a bif of the wiggles for the blood pressure, what can I say shes a tease.
She no longer needed to be on the Diuril, =) we're down to 21-23 dose a day. Progress.
She stopped taking naps back in January since getting her heart she wants them again, guess that was a sign? Over tired and wouldnt or just couldnt sleep. Nice to put her down at a normal time at night in HER bed.
We still have clinic visits twice a week at PCMC, She'll also have IVIG once a month. Shame the treatments cant get started before 1pm. Makes for a long long day. But I'll take a long visit day then moving back inside.
Thanks for all the prayers, its helped us stay calm and extra positive. <3
2 months ago
3 comments:
I have been following your blog for a while now and have never left a comment but I just wanted to say we are very happy this sweet little girl is home and doing so well! She is in our prayers!
My daughter spoke in Primary today - her topic was Jesus Christ heals those with faith. She talked about fasting and praying for Mariska and how her heart transplant was not the only miracle for Mariska. I know it has been a hard journey for you all but it has increased our faith - and especially that of my 8 year old daughter who is just starting to grow her own testimony. Thank you for being a faithful example and thank you Mariska for being willing to go through all of this. Hugs!
Wahooo go Misky girl!! She is doing so fantastic!!! Wow naps and in her OWN bed!! That has to feel nice??? Glad everything is going to great great great!! We will have to plan a play date some time. Now the boys are in school it's just me and the princess during the day. Thats crazy how many medications she is on!! I would totally have to make a spread sheet/timer station. Makes me wonder about Kylie she hasn't wanted a nap for months now. Crazy all the simple things add up huh???
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