Friday, November 12

Thursday was a frustrating day with a few long bloody noses.  The one in the morning caused her to miss out on a few therapy sessions.  However, one bright spot was in the height of her frustration the music therapist came in and quietly played and sang some Lauren Daigle songs.  That was such a blessing and brought some needed calm.


In the evening she had a bloody nose that lasted from 5pm - 4am.  For some of that time it was gushing, but most of it was just runny.  Unfortunately she swallowed a lot of blood which made her sick.  Since Josh has lots of experience with bloody noses he stayed the night with her.  


On Friday she spent the morning sleeping to make up for the loss of sleep that night.  It was a pretty quiet day, not many therapy people came in.  And, praise the Lord, no more bloody noses!!

A big milestone for today was getting the site for her Remodulin pump put in.  (the picture of the white disk on her skin). Today they wanted to try out the site with no medication for a day.  They will start transitioning the medication from IV to pump tomorrow at noon.  

She had been scared about getting a Remodulin pump but she's feeling better about it now.  I think it's because she knows that it is one step closer to going home.  

Josh and I will be trained next week on how to use and administer all of her medications and pump.



Tonight Madalinn and I ordered food from GrubHub (shout out to people who sent gift cards!!) and watched a Hallmark Christmas movie on the couch.


How are the medications working, you might be wondering.  Well, it's hard to tell.  Most of the time we've been here, standing up would cause her heart rate to immediately jump to 140-150.  This week we starting realizing that she could stand, walk to the bathroom and even walk around most of the hall without it getting elevated.  We were told that was a good sign that the medications are making a difference.  

Well, today, after a long night of bloody noses, whenever she stood her heart rate jumped.  She felt a need to use her oxygen mask for the first time all week.  

So, all of that to say, it's hard to tell.  They will repeat as Echocardiogram on Monday to be able to get somewhat of an idea of any progression.  They will redo a 6 minute walk test later next week to see the difference from two weeks ago when she required lots of oxygen to complete it.  


Pray:

For the triple therapy (3 medications) for her Pulmonary hypertension (PH) will work to relax and open up her circlatory system in her lungs.

For the change from IV to Pump.  (Monday or Tuesday will probably be the hardest, most painful)

For renewed ability to exercise and move about without feeling a racing heart

For God to be glorified through this whole situation 





Comments

  1. UnknownNovember 12, 2021 at 8:12 PM

    Joining you in your prayers.
    Love,
    Mike and Pam Snow

    ReplyDelete
  2. *November 14, 2021 at 9:23 AM

    Thinking about you all and praying hard. Love, The Lendavics

    ReplyDelete

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