Ed’s Blog Post
This has been, by far, our longest inpatient stay and subsequently so it will be the most complex discharge we have ever had. Although we do not officially have a discharge date, we are close. Spent time today working with the care coordinator writing the preliminary orders for the different home care companies. This includes everything from diapers, Ostomy supplies, syringes, all the way down to the tape that we use to hold the NG tube in place on her nose. Don’t worry. Rosa will be helping me go over this list so that we don’t forget anything 😉.
Beyond just the supplies and equipment, we have one more training left for the Trach, which is scheduled for Thursday. We have been scheduled for the central line placement on Wednesday. Once this new line is placed, we will receive two inpatient trainings and one additional training at home. There will also be a delivery to the house with all of our new home equipment to coordinate as well. Another parameter is that they will only discharge us on a Tuesday, Wednesday or Thursday.
This all seems like a lot, but the excitement of wrapping this up and going home is AWESOME! To put things in perspective, the hospital will be contacting the EMS in our area to tell them that if a 911 call is received they HAVE to dispatch a paramedic not just an EMT. The power company is NOT allowed to turn off our power, even if we are behind on payment. We will be put on a priority list when power is being restored after an outage. We were even offered a ride home in an ambulance on the day off discharge! This all seems so crazy, but the reality is we are taking home a very complex and fragile girl. We can do this!
Aimee continues to recover from her cold, which is awesome. She woke up this morning with a smile on her face and was interactive with the nurses throughout the day. I am thankful and amazed at how much of an impact Aimee has had on people throughout her life without speaking a word. Some of you have never met Aimee and I wish you could. She is awesome. She is not pretentious. Her smile is so genuine. Her laugh is so contagious that it will make you cry. Though probably not as much as when she cries, that is heart breaking. Aimee has changed my life forever, without saying a word.
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