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May 19-25

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Our girl is home! We got discharged from the hospital Fri morning,  after 18 very long weeks. There were many hugs and tears between us and the incredible team who has been integral in making this happen, and for those who have cared for all of us these last few months. Avery had the day off school, and Mike is still working from home so Marisa got to come home and spend the day with all of us which was perfect.  She was so excited and wanted to walk into all the rooms and touch everything once we arrived. We had a nurse come out Fri evening to walk us through setting up her TPN for the 1st time at home. We had several trainings last week to practice on a fake broviak line, but it was way scarier doing it on Marisa, and making sure we were extra careful to keep everything sterile, remember to wash our hands between steps, do everything in the right order, etc. It took us a few hours to walk through all the steps and organize all the supplies,  and talk through the process with the nurse before we actually did it. We've been on our own the past few nights since, and while we are slowly getting into a groove, it definitely requires both Mike and I and a fair amount of time to get the nighttime routine rolling. Setting up the TPN,  adding the vitamins, giving meds and injections, doing her stretching exercises,  osteomy cares, transferring her from couch to wheelchair to bed, setting up her overnight osteomy bag, making sure all the pumps are charging and no lines are kinked (which would set off an alarm in the middle of the night startling us from the little sleep we are getting like it did last night) is overwhelming to say the least. Cares and routines that we were previously so adept at doing in little to no time now take hours, coupled with all the new cares and challenges she now has. Everything takes 100 times longer to do and requires both of us, so that's a huge adjustment as well. We will get into a groove and a routine eventually,  but these 1st few days have been some of the most challenging yet. It's like having a newborn again and no one is getting much sleep, and we try to nap in shifts when she naps during the day, and we are exhausted,  BUT she's home, and that's all that matters. She has been loving sitting on the porch with us enjoying the weather,  taking daily walks in her wheelchair and got a bike ride in her Wike which she absolutely loved. Her home nurse visits,  Dr appointments and therapy schedule are already filling up our days and the real work now begins to get her back to baseline, but after 4 and a half very long months,  we can finally say the Moose is Loose ♥️

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