General Update (weekend 11/14)

 

Madalinn received this painting from a few of her friends.

Today at church I chatted with many people (which was so lovely) and their questions made me realize I need to post a general over all update.

Here is a bit of an outline from the beginning.  

- Thursday, Oct. 28 we were admitted the the cardiac ICU at Nationwide Children's after abnormal EKG and Echocardiogram.  Madalinn was diagnosed with severe Pulmonary Hypertension and a dysfunctional right ventricle in her heart.  She was in heart failure.

- Friday, Oct. 29 CT scan showed that Madalinn has a pulmonary vein that does not return to her heart but drains into her Inferior Vena Cava (The vein that brings all the blood back to your heart from your body).  They thought this was a primary cause of the Pulmonary hypertension (PH) and would require open heart surgery.  She also had some spots in her lungs of malformed veins (from HHT) they could also be playing a role in her PH 

- Tuesday & Wednesday, Nov. 2-3 Madalinn had a MRIs on her brain and torso.  From these images and measurements we found out that the misplaced pulmonary vein is not caring a large enough volume of blood to cause PH.  Since it's not a main player in of her PH, she does not require open heart surgery.  We also found out that the spots of HHT are small and also not key players in her PH.  

- Friday, Nov 5 Heart Cath went well...quick and without problems.  Pressures were much higher than they had hoped.

They have her on 3 medications to treat Pulmonary hypertension and are increasing them little by little.  Yesterday, Nov 13, she was changed from IV Remodulin to a Subcutaneous pump.  She will wear this pump 24/7 for the unforeseeable future.  It is our prayer that these medications will effectively open up her circulatory system in her lungs so that her heart can pump blood more easily.  We hope that they will be effective enough to take her severe PH to a moderate or mild case.  Pulmonary hypertension is a disease without a cure so it will be something she manages for the rest of her life (unless the Lord chooses to completely heal her...which we are still praying for)

So the current plan...Move from ICU to the regular cardiac floor, build endurance, get medications ready for home, do training on how to care for her.      

The goal is to get home before Thanksgiving.  After our discharge we will have regular outpatient visits to the heart center and to Pulmonary Rehab (supervised exercise and learning how to deep breathe...something she's never been able to do)

Here is a photo that helps to show what Pulmonary Hypertension is.  You can see how constricted the pulmonary arteries are in the picture on the right.  Also notice how much bigger the lower left (blue) side of the heart is in the right picture.  That is exactly what Madalinn's heart looks like.


Final thought.
Imagine plugging your nose and breathing through a straw for 1 minute.  
That is how someone with Pulmonary hypertension feels all the time.
No wonder Madalinn never liked to run, play or ride bikes!


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