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March 26, 2020 9:14 pm

Update: Alex continues to be under observation. We had to wait a few hours to get a room as the hospital has many patients. He needs to be in a room fitted for a dialysis machine so it took a while to move the patient, clean it and bring us up. Alexander is under strict 1-1 observation for his safety and, due to the floor being short staffed, I was unable to go to the cafeteria to grab a bite. My aunt came to relieve me with food and coffee around 4:30 but wasn’t allowed upstairs. Only parents are allowed on inpatient floors while the hospital is on high alert for Covid-19 precautions. I explained that she and my uncle play a significant role and are part of our team to get him to and from dialysis treatments. They made a partial exception and added her to the list of visitors. Throughout this time she patiently waited downstairs for 45 minutes. I was grateful for the arrival of my coffee and sandwich, albeit cold, it subdued my pounding headache.

So what exactly brought us to this point? Long story short, he wanted to clean his catheter. He felt that he watched the dialysis nurses do it enough and knew what to do. He was unaware, BECAUSE HE IS 12, that by uncapping his catheter and opening the valve that one of two things could result: bleed out or develop an air embolism. Both of which could have resulted in his death this morning.

While he did not bleed, he explained he heard a loud sucking sound similar to that of a straw before he quickly capped it. Potential Result: Air Embolism. The team explained that he is not out of danger just yet. If he has a significant amount of air that remains in his bloodstream, he is at risk of that air getting to his heart and going into cardiac arrest. God forbid this were to happen, they would attempt resuscitation efforts but cannot make any guarantees. (To my readers, I’m paraphrasing as much as I understood and am in no way a medical professional.)

So, he is there with my aunt and under hospital supervision. I am home with his little brothers just trying to keep it together long enough to write this post and get them ready for bed.

I shed many tears today and experienced a gambit of emotion. I thank those of you who continue to keep us in your prayers. I humbly ask that when you see our posts, you actively share the post using the hashtag #FindADonorForAlex and to tag a few friends every time. I appreciate your likes and comments, but they are simply not enough. I am desperate and begging you to please help me find a donor for my baby. I simply cannot bear this burden much longer.

#AlexsKidneyChampions #FindADonorForAlex #BeADonor #shareaspare #pleaseshare #AlportAwareness #AlportSyndrome #raregeneticdisease #ChronicKidneyDisease #CKD #ChronicIllness #EndStageRenalFailure #dialysis #kidneytransplantneeded #transplant #nationalkidneyfoundation

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