Trusting God's Plan

Madalinn presenting about Pulmonary hypertension 

at our homeschool co-op academic fair.

So many of you continue to pray for Madalinn and us and we are so very thankful for that!  I want to share  a few updates with you.

1. Yesterday (Thursday, Feb. 17) Madalinn had another echo (heart ultrasound) to prepare for our Telehealth visit with the Cincinnati Cardiologist coming up March 3rd.  From reading the results on MyChart, it looks like her pressures have lowered significantly and the hypertension has decreased from severe to moderate!  This is huge (if we understand it correctly).  Her right heart still has severe dilation and dysfunction, but things seem to be going in the right direction!

2. Due to a bit of a covid quarantine delay, we are finally wrapping up Pulmonary Rehab next week.  She has come so far in her physical ability and endurance.  They will do another 6 minute walk test and repeat the exercise test she did before starting rehab to see how much progress she has made.  We are excited to see the results.

3. Yesterday we signed the final consent papers and Madalinn was officially listed on the lung transplant list in inactive status.  This means that if she would ever need a transplant they can quickly make her active.  We do not currently expect or foresee needing a transplant, however our team of doctors feels like it is better to have things ready if it is needed.  

    We have been working to get to this point so it is not feeling overly emotional or difficult.  It actually feels a bit unreal and removed.  Being around Madalinn in the day to day we forget how sick she is on the inside because she looks, acts, and feels so good.  We are trusting God's plan.

4. We have been increasing Madalinn's Remodulin (the medicine that is a constant infusion) each week since we left the hospital.  We are now only about two weeks away from reaching her goal dose!  This is huge because the medication sometimes has difficult side effects that make it hard or impossible to reach the goal. However, Madalinn has only experienced mild side effects and her body seems to be adjusting well.  We attribute this to your prayers that God has been answering! 

    We are also excited and thankful that her current site has lasted two months so far.  They usually last about 4-6 weeks.  Her first site lasted just under 4 weeks.  Here is a picture of what her sub-cutaneous site looks like in the back of her arm.  That tubing goes down her shirt to a small pager-like pump that contains the medication.

We are so thankful for a great team of doctors that make themselves to available.  This week Madalinn had a large bleeding incident and her hematologist got her in the same day to check her iron levels.  She will be receiving some IV iron next week.  We feel very cared for and thankful.

God has been at work.   He has been increasing our trust.  He has been giving us strength and endurance mentally, emotionally, and physically. And, He has been healing her body.