Well this morning started out well as I was happy to be back at the hospital with Ava and she was happy to see me and we had a really nice snuggle…
But then rounds came by. And the doctors told me that in their view Ava is getting worse and they are pretty sure her terrible heart function is causing all of her problems. And because of this they wanted to make sure that I talked again to the PACT team (palliative team) about making sure we had a Care Plan in place for Ava that would make sure that she was always comfortable and never in pain as she struggles to wait for a heart.
Now, the funny thing is, I actually talk with the PACT team daily as they come and see how we are doing, so we are all good friends by now. They know us and how we feel about Ava and her wait for a heart, and they know we have never allowed Ava to be in pain or uncomfortable. But they said that sometimes the Dr’s – in our case Cardiologists – feel that something has to change in a situation like ours when a patient is deteriorating rapidly, when really nothing medically changes, we just continue on like we have been. But to make everyone happy, the PACT team said they were going to write a little note for Ava’s binder saying that Jason and I are good advocates for Ava’s care and to administer morphine or a sedative whenever Ava requires it or we ask for it.
So I should be discouraged, except I’m not, I’m actually encouraged. See, I know that God is the one who has a plan for Ava and He isn’t finished with her yet. The woman who cleans our room everyday at the hospital is a believer and she has this incredible faith and reminds me daily not to give up hope, that God has a plan for Ava and she tells me all the time that God is going to heal Ava and bring her a heart. Even though I sometimes think her faith is a bit extravagant :), I know her daily encouragement is a gift from God.
And the truth is we don’t know exactly in what way God is going to heal Ava. Is He going to provide a new heart for her on earth? Or take her home and give her a new heart there? All I know is that I can fully trust Him, even with the difficult knowledge that His plan might be to take our baby away from us, which would be so painful. But I just had the opportunity to pray for another mom who is waiting for a heart for her daughter, and being in a position that God can use me to pray for others encourages me again still. Plus there is this verse…
Now to him who is able to do far more abundantly than all that we ask or think,
according to the power at work within us,
to him be glory in the church and in Christ Jesus throughout all generations,
forever and ever. Amen.
Ephesians 3:20-21 ESV
God can do more in this situation with Ava than I could ever imagine or think. Praise God, how wonderful that He can encourage my heart even on a day like this. He is good!