Back on Milrinone…*Updated*
Dr K just came in and said that the cardiologist that prescribed the Milrinone didnt know Emma, and was just going by her BNP numbers… Hers are always high because of her Coronary Artery Disease. He is going to cut the dose in half today and stop it in the morning. We should be discharged tomorrow sometime before lunch..
:)
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Her BNP was 1500 (600-1500 means overt congestive heart failure.) so they decided to put her back on Milrinone to give her heart a break. Her Echo looks the same as it did at discharge on the 5th of June, so that is good. At her clinic visit last Monday, her regular transplant cardiologist told me that as long as her heart function looks the way that it did on that visit, he is not concerned with her BNP, it is just one part of the puzzle and not to be too concerned with that number. (He is not at this hopsital, we are at ACH and he is in Gainesville at Shands.. Shands is a 4 hour drive for us). I am hoping to talk to him this morning on the phone.
Otherwise, she looks great! I was shocked when the nurse came in and said she was going to start her Milrinone. That is a big drug to use before telling us what they are doing and why they were doing it, especially when we were told that they were just going to “observe her”. Mark talked to the Cardiologist last night on the phone and politely told him that we would like to be informed when changes are made.
They started IV antibiotics last night - I hope to find out what they put her on when I go back. She is requesting her standard Pancakes and Bacon for every meal :)
That is the update for this morning. I will update again once I can get back to the room.. and can speak to a doctor..(The nurses are doing change of shift) I hope and pray that this wont become an extended stay like it did last time, I can not see why it would.
Today she was suppose to start Summer School :(
Thanks for the prayers and support…
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Oh My what a busy time I have had…
First, I apologize for not updating sooner. I have been a bit under the weather and just today have felt well enough to update you on what is going on here….
The Sunday before last (1-27) we had our first home group since my diagnosis and proceeding surgery. It felt so wonderful to entertain again, and to delve into Gods word with everyone. We have been doing the series Nooma which is a great building block for discussions. It lays the ground work in a basic way and depending on your crowd and their spiritual level you can go real deep or stay basic. We had praise and worship, followed by snacks and then watched the Nooma devotional “Lump”.
It really was a great time…
Then this past weekend, we took Easton and her two friends to the Revolve Tour which is put on by Women of Faith. Hawk Nelson was there, and OMGosh did Easton go wild. Easton broke her wrist last Thursday (I know, right!) and she just HAD to have the lead singer of Hawk Nelson sign her cast. (I thought Hawk Nelson was the name of the lead singer, but I was set straight with a huge eye roll). We adopted a a young girl in Chad named Nguemadjibaye through World Vision for $30 a month and Easton got a “golden ticket” to have Hawk Nelson, the entire band, sign one item. What would that one item be?? You guessed it, her green and black swirled cast on her right arm… You would have thought she had died and gone to heaven. But that is not the best part of the story, oh no. When Jason (the lead singer of Hawk Nelson) asked her how she broke her arm, and she replied “Playing Soccer”…. He said…… “Did it hurt when you fell from heaven?”
Oh.
My.
Gosh.
Now my dad, her papa, said that if he were there he would give that boy a stern talking to, but I thought it was too cute to see her face turn beat red and hear her giggle about it the entire next day!
Here are some pictures of of the girls and the conference:
And Just to give you a peak of what Easton was doing the Entire.Time. Hawk Nelson was playing:
And…. Guess what her shirt says?
The conference was really great, and it wasn’t all about Hawk Nelson. The praise and worship team were phenomenal and the teaching was spot on. When Natalie Grant (yes she was there too!) sang “Better Hands” I just bawled. They had one session on “Are you a treasure or a target” which really ministered to my daughter. And one drama skit brought her tears about baggage. Her dad asked her if she was carrying baggage that she would like to lay down and through her tears she answered yes. He said if you don’t want to tell me what it is you don’t have to, but I would really like to help you with it. She told him that she was fearful that Emma and I were going to die, and that she thought about that all the time. (The picture of them together up there was when they were discussing this) Oh how that broke my husband and I’s heart. Mark told her that she could lay it at the foot of the cross, just like the girl did in the skit. That she didn’t have to worry about it or carry it anylonger, and that he knew how hard that was, but no matter what…. NO MATTER WHAT…. God would never never leave her side. Mark didn’t promise her that I or Emma wouldn’t die, that would be so unfair to her…. But he did promise her that no matter what happened, He would be there, and more importantly her heavenly father would be there.
Beautiful Father Daughter Moment….
I have had a tremendously busy 2 weeks, and am currently on my chemo cycle with a cold… but I just couldnt pass up telling you about all of the wonderful memories we made and all of the awesome moments we have had together.
God is good, all the time.
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