We are both here for the night with Aimee working on getting her better and making plans for how to have success going forward with her care. We spent the afternoon making lists of what we need in every area of care: ileostomy, medicine pump/enteral, vent, oxygen, trach, replogyl intermittent suction, urinary catheter, diapering, central line care, iv pumps, oral/nasal suction, medications. With longer stays, every prescription has to be rewritten and we have to consider every little item that we will need for her care in that area. Definitely a project to work on together.
Last weekend we put together emergency respiratory bags to carry with her at all times. This weekend we started re-assembling a bag of other supplies that she would need, like seizure rescue meds and catheters. In preparation for her coming home, we need to work on clearing out her room of previous supplies like formula and feeding bags to make room for the new equipment. Anyone need lots and lots of fiber?? I am hoping to connect with other families who could use the items that we no longer can use. We need to add a small refrigerator to her space for the weekly TPN delivery and her meds. Hopefully the resident handyman (Ed) will be returning soon to make modifications to her home space for the changes.
Aimee has been awake quite a bit today, interactive, and moving her hands and shoulders. It seems like she is just discovering that she can still move them. Respiratory wise, we have done treatments about once an hour throughout the day. She was requiring quite a bit of oxygen, but this evening we have weaned her back down. She is doing well right now and sleeping peacefully. Hoping this means we are on the positive end of this sickness finally. Our discharge depends on her recovery. We were told by the anesthesia team that we would need to wait 4 weeks post virus before her central line placement could happen. Once she is recovered sufficiently though, our attending can go to bat for us to shorten that timeframe up. Praying that by Monday morning Aimee will be well enough for that scheduling attempt to be made.
My niece Angelique is with the younger 4 tonight and has sent me a couple of cute photos. Why couldn’t their growing have been paused for this season?!?
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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