Joshua’s Story

Site created on June 9, 2018

Welcome to our Caring Bridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  Joshua has an enlarged heart, mainly the  the left ventricle that pushes blood up to the  aorta the supplies oxygenated blood to the rest of the body.  since it is enlarged it causes a low ejection fraction.  We discovered at 5ys. old his ejection fraction was 40-45%.  Normal ejection fraction is 65-70%.  We observed this with Pediatric Cardiologist on a yearly basis until he was 12 and then they decided that it has been stable with his medicine  that we could now go every other year.  February 2018 he had his heart check up and discovered there had been a drastic change in his condition.  My first born was in heart failure, his heart was severely enlarged and ejection fraction was 20%.  We were told that he heart would not be able to recover from this and he would need a heart transplant very soon.  We are all just devastated at this point.  On Monday June 11 we will go back to Rochester for blood work and recheck, Tuesday June 12 he will have surgery to have a defibrillator put in to help until he gets a new heart.  He should be placed on list sometime in July.  Then we just pray and wait.  And all Joshua is concerned about is playing baseball this summer.   He  is an amazing, loving, giving, funny and caring child who worries more about others than himself.  

Newest Update

Journal entry by joyce hummer

Josh's benefit is being postponed for now until we know if/when the Wowzone will be able to host the breakfast buffet fundraisers again.

He has been doing ok.  Does not like PT, or Cardic Rehab.  due to COVID19 he won't go but does some video calls with PT from Madelia hospital.  His blood work looks good, echo looks same but he is accumulating some fluid again. Increased his med.  His weight will be like 6 lbs different from like 8am to 1pm.  His annual heart check is last week in July.  About 3 days of testing, heart cath and echo.  They will check pressures inside heart to see if it has worsened, may be a sign of the current fluid issue. Not good.  He has fallen in shower 5x since he has been home.  Finally got some hand rails installed.  He unfortunately has found out the hard way what happens when he over exerts himself or gets super mad and heart beats really fast. He has gotten light headed, nausea, feeling faint and briefly blacked out one time.  Pretty scary stuff. He gets super frustrated often.  Spent almost 6mo in hospital to come and be stuck at home due to Covid. 
He has fished with his brother a few times and they have been racing their electric cars that go over 30 mph up and street. Expensive hobby!  He planted a garden with me after he and dad built raised garden bed. We planted peas, onions, cucumbers and pumpkin. It's all growing, he is excited about it. He takes care of watering and lets me know if any weeds pop up. Lol. 
 We continue to have a Gofund me and any donations can be dropped off at any Pioneer Bank in area.

Stay safe and healthy,. God bless! 
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