Going home update

 


Thursday started with Madalinn and us walking from her room to the Blue Jackets room (a hospitality place for families in the hospital) for a CPR class.  Madalinn was excited to take CPR because she hopes to be able to start babysitting in a few years.  She was also excited to be able to walk so far without a nurse escort!

Then Lori from CVS specialty pharmacy came to teach us how to administer Madalinn's Remodulin.  This training was 4 hours long.  Our minds were swimming with so much new information.

Thursday night Madalinn started going through some preliminary testing for a procedure that she might need in the future if medications don't end up working for her.  


Friday was full of excitement and a long to do list so we could go home.  Madalinn went to three tests while Josh and I had a meeting with the pharmacist to go over all of her other medications.  Then Lori came back to finish our Remodulin training and watch us change over Madalinn from her hospital Remodulin pump to her home pump. 

We had one last meeting with Dr. Phelps (our PH specialist).  She told us they are setting us up with a consultation in Cincinnati with the HHT center of excellence.  We are thankful to be able to hear from them about her HHT, specifically her nose.

Last but not least, Madalinn got shots for flu and covid.  PH makes her much susceptible to having a more difficult time when she gets sick.  With some of the money we've received from friends and family we purchased air purifiers for our home to help her health.

Finally we got our discharge papers with all of her upcoming appointments and then we were out!!!


When we got home she was welcomed home by all the neighbor girls.  It was so sweet.  We enjoyed a quiet evening at home.  I sorted out all of the Remodulin supplies into a plastic drawer set.  

Some people have been asking, "how are you doing?"  Honestly, I'm so super happy that she is home but also am filled with anxiety.  Tonight I finally put my finger on the one other time in my life I felt this same intense anxiety.  Ironically it was when Madalinn was born and we were taking her home from the hospital.  Having a baby was so new.  I knew it was going to be life changing but wasn't sure how.  It felt like a huge responsibility and I didn't really know what I was doing.  There was so much to learn.

A new diagnosis feels like brining home a new baby for the first time...life changing, feeling clueless, the health of someone is my responsibility, how I use my time changes, so many new things to learn...etc.    That is how I'm doing.  Happy but anxiously overwhelmed.   Change is difficult especially when I don't know what to expect.   I'm thankful that Josh and I are in this journey together.  We make a great team.

Saturday the CVS specialty pharmacy nurse came to our home to watch us change Madalinn's Remodulin again and teach us a few more things.  As he finished up, the door opened and the boys walked in!
My parents brought the boys and dog home!  We were all so happy to see each other! Together at last at home!


Ways to Pray:
- Continue to pray that her blood vessels will open in her lungs.  By the hand of God and/or by medication. 

- Pray for our family as we reunite and adjust to some new routines 

- Pray for Madalinn and us as we try to figure out her endurance and how to do simple things like showering and getting dressed.

- Pray for the peace of God to fill my heart as I try to trust him with the future.




Comments

  1. KathyNovember 20, 2021 at 7:47 PM

    Love and prayers for your journey❤🙏

    ReplyDelete
  2. Mom/Grandma MarthaNovember 21, 2021 at 12:37 PM

    So happy she’s home! Praying for Gods peace and power to fill you.

    ReplyDelete

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