Reaching Goals


 

Goal 1:

Last week Madalinn finished up her Pulmonary Cardiac Rehab.  She had 12 sessions of physical exercise therapy, 6 sessions of occupational, recreational, massage, nutrition, and psych therapies.  She worked hard and grew in strength and confidence. 

On the final day of Rehab she did repeat endurance tests to see how far she progressed.  In the 6 minute walk test she walked 490 feet farther than she did in December.  In the cardiac stress test she lasted 2 minutes longer on the treadmill and her stats all showed improvement.



Goal 2:
After waiting a few months, last Thursday we met with Dr. Hirsch, the Pulmonary hypertension cardiologist from Cincinnati Children's, via Telehealth.  Our main goal was to get a second opinion.  He said he agreed with our Columbus team's choice in treatment, but had a few other suggestions.  We will meet with him in person at the end of April.  


Goal 3:
The final goal that we accomplished was reaching Madalinn's goal dose for her Remodulin.  Since leaving this hospital in November we have been increasing her dose by 0.002ml/hr each week.  Her doctor was unsure how she would tolerate the increases because for some people the nausea, diarrhea, head aches, and bone aches become too difficult to endure.  However, Madalinn has had very few side effects and has tolerated it beautifully.  We are excited to have reached this goal.  

Now that she has arrived at goal, her doctor will soon schedule a repeat right heart catheterization to be able to see very detailed information.  Also, since we've hit her goal they will do all of their fancy math and change the concentration of her Remodulin so we won't have to change her medication every day.

Goal 4:
We finally did all of the tests, appointments, and paperwork.  All of the meetings between important doctor people have happened.  The state of Ohio has approved.  Madalinn is officially on the double lung transplant list in inactive status.  She is 1 of 2 patients her size listed for lungs at Nationwide Children's.  We do no foresee needing a transplant, but it is good to be overly prepared just in case.

We have no doubt that the reason Madalinn is doing so incredibly well is because of the prayers of many, many people.  God has truly been at work in her body and we are so thankful.  Our heart is, and has always been, for God to be glorified through all of this...no matter the outcome.  

Ways to pray:

- Pray that the medications will continue to open her pulmonary arteries so blood can flow.

- Pray that her heart muscles will heal and that the right side of her heart would become healthy again.

- Pray for us as we discern which cardiology team to be our main team.  We like our team here and we live 10 minutes from the hospital.  However, the Cincinnati team has some unique things to offer.   This is feeling challenging to navigate.







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