Sharing stories of fear, frustration, hope and acceptance

Archive for the ‘Grief, End of Life Decisions’ Category

The CalendarĀ 

The weeks are long, like a blur. The days go by. The clock ticks louder and louder. I finally got Adam to the right doctor. I finally found out why he was so tired and struggled to even keep his eyes open. I finally had my answers, and it’s not good news. Adam was diagnosed in Summer of 2017 with Renal Dysplasia, as I understand it, it means his kidneys are too small. This can occur in children like Adam who are born premature. He now has stage 3 renal failure and in April of 2018 he was hospitalized and received a blood transfusion. This is when the clock began ticking.. Tick tock… Tick tock

The blood transfusion that should have lasted 120 days only lasted 2 weeks. So than the doctor asked us if we wanted to try shots of medication that would possibly cause pain in his bones or as it was being administered through the site. Shots would be 1-3 times a week. Pain? This is different from your average sting of a shot, we declined to give it. 

Since than Adam’s hematocrit and hemoglobin have declined significantly. Leaving him pale and puffy and so very sleepy. As the clock ticks the calendar doesn’t look the same. 

 

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