Crazy to think it’s only been a week. Feels like it’s been sooo much longer! Our little lady still has a ways to go but she sure has come a long way in a week! The last few days have felt really hard. Many sleepless hours, lots of pain and vomiting, and overall just feeling crummy. Overnight and this morning, pain was still not great but vomiting every hour or two was her biggest challenge. They have restarted her on Emend to help control the vomiting and it really seems to work. Pain team moved around her pain meds again. We still hadn’t found the right mix to get her comfortable for more than an hour or two at a time. They started her back on ketamine late morning and she’s has been comfortable and resting all evening!! Wish us luck that this stays through the night.

She is now on a full diet and although had zero interest in eating this morning by this evening she asked for a bagel. After 59 days of not eating anything solid, she has officially eaten again! She had only a few bites but it’s a great first start. She also began a 4 hour window (10a-2p) of being off tube feeds to help encourage her to want to eat. Once she begins to eat more consistently the window off feeds will increase. 

Her movements have been getting smoother and smoother every time she gets up out of bed. She was able to turn herself to sleep on her side twice last night. The goal for the weekend is to walk as much as she can so she’s ready to hit the PT gym Monday! Today, the hospital integrative medicine team came by and gave her a massage. She loved it. 

Lastly, she officially got her first Dexcom placed today! She did amazing. Next week Jarret and I will begin our many, many hours of diabetes education. Most will be a review for us but it’s important we go through it so Emmy has a chance to learn and ask questions as it’s mostly all new to her.