Ivy Joy

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 We are approaching 2 weeks here in the hospital and both Ivy and I are ready to bust out of here! She is such a trooper, honestly, if you could see this child's demeanor you would melt! As do the doctors and nurses, a true super star with cuteness and a voice that makes you smile instantly to tie it all together!
This morning she said, 
Mommy, I sad 
I told her it was ok to be sad but what was making her sad?
She said, 
I missin Daddy and Bubby and Catchidy, and Ryree and Kinsie and Wexie. I missin my tower and my couch and my home and my carseat. I need to peel eggs in my tower and I need my swimsuit. I goin swimmin after bwekfast! 
I am trying my darndest to get this baby out of here. But she is fragile and we need to be careful.

So this is where we stand...
Ivy is off Milrinone (IV heart failure med) and doing just fine without it for now.
She is came off her last IV diuretic yesterday afternoon. She has had her PH meds ramped up to the highest dose and we feel it must have relieved some discomfort because yesterday she walked the hall, up and down 2 times which is more exercise than Ivy has seen in a very long time! Her legs were quivering from having been sitting for 2 weeks but she pushed herself and insisted. When she was done.... she rested the rest of the day lol! She is on a new heart failure medicine as of just last night. We will be raising the dose of it over the next 48 hours. She is tolerating it well.

We found out that Ivy has zero antibodies. This came as a complete shock... and if you know about transplants already then you know this is very good!

We have an appointment at Lucile Packard Children's Hospital in Northern California on the 7th of May. This will be our new hospital away from home. (We are originally from Northern California)
We will be spending at least 3 months there after Ivy is discharged with her new heart. It is close to family and close enough for visits from Daddy and the bigs if they happen to be in school at the time. We will be able to wait at home for a heart and once we get word, we will fly (quickly) to Lucile Packard. 

Our hope and prayer is that Ivy will come home by the end of this week or early next week. Hold her own with these oral meds. Have her Birthday at home a few days early (her party is the 4th) and then head to California on the 6th (her Birthday) for the all day, outpatient appointment on the 7th. 

We are also praying that she can take a regular flight, not a med flight. (because with transplant ahead, we need to save those insurance dollars). We were advised not to drive since it would be hard on her little body to travel for such a long time. We will need to take oxygen on the plane so we have the whole airline thing to deal with as well. All my wheels are turning, I know what I need to do, now I just need to do it! (but honestly.... I just want to take her home and pretend life is about to get easier...hahahaha, whatever right? Not Gods plan! He likes to keep us on our toes! 

So thats about it. We are doing good. We are still processing how this will all work. We are anxious for answers and of course for another 4 months away from home. For those wondering, yes, Lexi will be traveling with me this time! Praise God!! And during any time that there is no school, the bigs can be with us as well. 

The prayer request to get us out of here is just for Ivy's INR to get therapeutic again and to continue with no problems. We are still holding on to hope that it be this Friday!!! 

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with  hope by the power of the Holy Spirit.   Romans 15:13



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