12.21.17 Wound VAC32

Aimee’s care conference was this morning. Everyone is working really hard to get Aimee home by Christmas. 

Ortho has gotten all of the wrinkles out with insurance and the wound VAC plan. She had another dressing change this morning and we double checked that the home machine is working. They have set up a series of twice weekly appts for us over the next month and hope to be finishing up the wound care by the end of January. 

Medical is going to have a GI specialist help us through our remaining concerns. They are saying that Aimee’s upper GI track is abnormal just like her lower already was. Her stomach isn’t emptying appropriatly and her small intestine is slow. This may be the new normal. And we will most likely have to power through a lot of up and downs over these coming months. She may vomit multiple times a day. She may have to have a continuous drain bag on her stomach to vent secretions. She may never be able to use her stomach again. She may always have some level of intolerance. She may always have to be on motility aid medication. Or she may slowly recover some or all the function she had before.

We are bummed. In so many ways. It doesn’t feel okay that her normal would be so distressing. It doesn’t feel comfortable to go home with so many unknowns and so much trial and error left. It feels icky to have her quality of life so damaged and to head home like it is no big deal.

For today we need to get her back to hydration as she is not producing much urine. We need to have a stable day without huge scary desats during vomiting. We need to consult with the GI specialist. If she stays stable, we will try to clamp the stomach drain to see if she can tolerate her secretions again. Then we can remove the PICC line. Once we do that and switch her over to the home wound VAC, we can pack our belongings and bring her home. It may be that we can get to that place by tomorrow, or maybe Saturday.