What a whirlwind the last three weeks have been for everyone! I have updated Facebook posts from time to time b/c it is easier being Mobile friendly.  This one maybe lengthy. 

Scarlett continues to improve. She was discharged 13 days post surgery, that is a record for this team. Initially they told us to be prepared to stay impatient 3-4 weeks. I didn’t feel like she was ready to be discharged but we weren’t given much choice after voicing our concerns with her team. The day she was discharged I was in Alabama. Kelly immediatly became a home health care nurse managing feeding tubes and machines. He became a wound care specialists caring for all of the different incisions sites. He became a diabetic expert as he quickly had to manage her blood glucose levels. His nights included alarms for 10 – 12 different tasks each night. 

I came back on Friday with Ansley and Shep and a car full of supplies. It was hard enough to plan for the TPAIT surgery let alone the Coronavirus! Ohio is about a week a head in the CV chaos and changes. They shut down restaurants, testing sites, supplies have been limited for a while here. 

This week Scarlett had two full days of appointments with her team. Cincinnati Children’s was like a ghost town. They are using ipads and Facetime or other conferencing for many of their staff like Diabetic Educators, translators, social workers and using them for appointments for patients. 

We have had to navigate different goals from the surgical team and the endocrinology team but I think we have finally brought awareness and they are working together with her plan. So here are the milestones she has met and they are milestones! Her formual feeds were discontinued by GI on Tuesday. This again is another recored. She was challenged by GI to eat  1,600 – 2,000 calories a day and if she continues to meet the goal she can stay off the formula feeds. The formula feeds were problematic in multiple ways but mostly her gut didn’t like the formula and it caused a lot of discomfort and pain which then causes a trickle effect of different issues. She is stretching her pain meds out further which is a huge relief! Yesterday in the endocrinology clinic they made some good changes to her insulin and we have seen a big different in less than 24 hours. They explained this is not the typical way a child becomes diabetic. She is 1 in 300,000 and only 66 children who have had this surgery at CCHMC. Everyway a normal diabetic would be diagnosed and managed is opposite for now due to the small intestine being rerouted and the trauma. 

Scarlett’s goals are now to stay the course, continue to move and gain strength. 3 days ago she walked 200 yards which is the most she has been able to walk. The next day she took the steps and did a little work there. Yesteday she walked and walked until she needed the wheel chair while we were at CCHMC. Today she is going to try playing her flute! 

We are hanging tight in a small space quarantining as much as possible during this scary time. I have not homeschooled, set up a schedule or anything else. Our schedule consists of a long list of medical management that is both day and night. I wish we were in our own home riding this out but I am thankful to be close to her amazing team who continue to make her recovery a prioriity! 

We are asking for continued prayers for healing, for reduced platelet counts, for comfort from pain, for patience and understanding with each other. 

Thank you for loving my family the way you have!

Much Love, Alissa