Monday Nov. 8

 

Today was a happy day!  Another HUGE stack of cards from people all over and large canister of popcorn from her favorite popcorn place Al's Delicious Popcorn!  She got to play games with therapists, play an interactive game that her cousins made, and her Mamaw came to visit.

In my last post I explained the hard realities of Pulmonary Hypertension and our disappointment that medications seem not to be making a difference.  Over the weekend I joined a Facebook group for parents of kids with PH and it was so helpful!  I learned that everyone's experience is that changes from medication are slow.  They can take three or more months!  So, according to our PH team today they will continue with medications (a triple therapy) while also educating us on other options if we ever need them.  

We learned today that they are planning to change her main medication from IV to Sub-Q (exactly like an insulin pump).  They will train us to be able to use the equipment so all of her medications can be cared for at home.  They even said that their goal is to get us out of the hospital before Thanksgiving!  What happy news!

Two main goals before we can discharge are 1. Education for how to care for Madalinn at home  2. Madalinn to gain physical endurance so she can manage basic tasks at home

Ways to Pray:

- Continue to pray that God will heal her lungs and heart

- Pray for her body to be receptive to medications (some people with certain genetics are not receptive and we don't know any genetics results yet)

- Pray for the hospital workers who are trying to work with our insurance and special pharmacies to get her medications to an affordable level (They are 1,000s of dollars each month)

- Pray for Josh and I as we enter into a huge learning phase



These two weeks I have had a song stuck in my head.  Know You Will by Hillsong United.  

I don't know how You make a way
But I know You will
I don't know how You make a way
But I know You will

It is like my continual prayer of faith. 
Listen to it here

Comments

  1. Mom/Grandma MarthaNovember 8, 2021 at 7:27 PM

    Wonderful news!!

    ReplyDelete
  2. Kim StarkeyNovember 8, 2021 at 8:00 PM

    Continuing to pray!! Thanks for taking time to update.

    ReplyDelete
  3. KathyNovember 9, 2021 at 2:48 AM

    Lots of prayers going up! So happy for this good news! Do you have a GoFundMe for the extra expenses. Or a Cash app?

    ReplyDelete

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