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COTA for Mighty Noah Needs a Flood of Support!

Noah is a sweet, funny, almost seven-year-old who has a very different life than most seven-year-olds. He loves Legos and Superheroes. He is especially into Spider-Man at the moment. He attends school when able, but prefers to stay home most of the time. He spends free time playing with cousins, as his adventures are still limited due to germs and medication times. Due to a heart transplant and related issues, Noah is currently on 17 medications. Many are twice daily and formulated to go into his feeding tube, which is life sustaining for Noah.

Ever since Noah’s heart failure at 7 weeks and the heart transplant he received at the age of 12 weeks, people have asked if there was anything they could do to help. Until now Noah’s parents, Susan and Mat Harvey, have always answered that people could pray. Even when they were encouraged to launch fund-raising efforts, Mat and Susan trusted they would be fine because they had insuranc...

Updates

 

Update on Noah

Heard from cardiology today already from some labs today that heart labs look stable but it will take a few days for BK lab results. In the meantime Noah has 3 sores showing in his private regions which causes more pain & discomfort. This is a Continue Reading »

Our First Event is ONE WEEK AWAY!

So much fun is in store for next Saturday, May 18th! We’ve got 8 baseball tickets for the Indianapolis Indians, a few instapots, and a photography package for the silent auction--just to name a few! Hope to see everyone there! Continue Reading »

Medals for Mettle

Noah & his siblings were awarded medals from races today as a symbol of the medical race he runs constantly. Noah’s last labs confirmed the BK virus is in his bloodstream. ?? His other labs are doing ok for now. The focus is getting the virus Continue Reading »

BK Virus results are in!

The results of the BK virus are in . . . They were POSITIVE in the urine ???????? ????They called us to the hospital to explain what this means and for a treatment plan. They also ordered the blood test to see if the virus has made it into his Continue Reading »

Going home, but the worst is not over

We are taking the hospital up on taking Noah home later this evening. He has had 2 rounds of IV antibiotics which will put a dent in his infections and they are not planning on giving more via IV. We are waiting for a particular test to come back, Continue Reading »

Noah is admitted to Riley Hospital for Children

Noah is being admitted he has pneumonia in his left lower lobe again. ??The strong IV antibiotics should help him fight it and he will be on g tube antibiotics for several days. The good news is he doesn’t require oxygen support. There are some Continue Reading »

Urgent Prayers Needed!

Pray for Noah . . . As I mentioned in an earlier post he was showing symptoms of illness. His team felt things were getting worse and have sent us to the Riley Emergancy Room. Please pray they figure out what’s going on and that it’s nothing Continue Reading »

GI appointment update

Noah’s GI appt went well today. Despite his lack of weight gain they are allowing us to stay at 2 feeds a day instead of 3 since Noah is becoming very aware that he is “different” and we are trying to help him feel more comfortable around his Continue Reading »

Monthly lab results & bi-monthly heart clinic visit results

Noah’s monthly blood labs & bi-monthly heart clinic were the other day. The ab results are in his BNP lowered a bit so the extra immunosuppressant is working. However his liver numbers are 5 times what they should be. They worry about Continue Reading »

Updates on our Brave Noah

Noah had his genetics follow up this week and they believe he is reacting to his shampoo and body wash. It was Aveeno. He has been suffering from chronic skin infections over the last few years. They recommended going back to Johnson’s baby Continue Reading »

Low Vitamin E

Noah’s labs came back and cardiac transplant labs are stable. His GI particularly his vitamin E levels keep dropping. This level tends to have a direct link to his liver enzymes as well as his overall muscular weakness. It is at a point the team Continue Reading »