September 17, 2019 2:37 pm

Day 8 and 9

Yesterday we “graduated” from the PICU to “the floor” Alexander is much more active and has less access points attached to him. Negative for infectious diseases. He does have a cold. Weaning him off blood pressure medicine. Trying to figure out his dialysis “prescription”. Still waiting for biopsy results. Strict diet and strict liquid intake. Alexander is happy they added snacks in between meals. He is thinner.

We connected the Nintendo Switch to the tv in the room last night. The nurse came in and asked “Were you able to figure it out okay?”

Alexander responded,”Yes, my uncle Mario is an engineer.” We laugh.

We are looking at 2-3 more weeks in the hospital at a minimum. Dialysis will likely take place in North Haven. I plan to ask if we can find something closer to home or I might need to revisit a plan to move to New Haven. I also need to create a plan for childcare and returning to work. The words “stressed” and “overwhelmed” does not fully encompass how I’m feeling.

Picture is from last night.

#FindADonorForAlex

Image may contain: 2 people, people smiling, people sitting and indoor

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