11.15.17 Appointments

Ed took Aimee in for 2 planned appointments today. They first met with Aimee’s epileptologist in neurology. Aimee actually had a few noted seizures during the drive and during the appointments. They decided on an increase in one of her seizure meds and possibly an additional increase if we don’t see an improvement over this next week. 

Secondly, they met with the PT and wheelchair vendor to adjust Aimee’s chair post-surgery. Ed had done such a great job adjusting it himself that there wasn’t any urgent changes. They did add some extensions to her foot rests. Longer term, they ordered several new parts, including a new head rest, new back, and new seat... basically they are remodeling her chair. The new seat will have air cells that can be inflated/deflated to compensate for her tilted pelvis, which is starting to cause pressure points and redness while in her chair. The new backrest will be moldable to allow them to compensate for her left shoulder that is pushed back. Overall, some upgrades to better accommodate Aimee’s growing and changing shape. 

Aimee has made major progress this last couple of days in both feeds and wound healing. The silver strips and air time are making a big difference in the lower incision. I feel hopeful looking at it tonight that we may see the whole wound close up over this coming week. There are about 6-7 open spots still, but the rest seems to be filling in well and is looking much less irritated. :) Such a relief! 

Aimee is taking 60-80% of her food and 80-100% of her fluids over 24 hours currently. She is making strides finally. Our hope is to get her up to 100% of the next several days and then slowly move towards 12 hour feeds and 24 hour fluids. I would really like her to not have to eat during the night. 

In the midst of all this positive, Aimee is feeling much better most days. We plan to slowly decrease her pain meds as she shows us she can tolerate it. Today she did amazing and was so happy, even with the long drives. This is the picture Ed sent me during the break between appointments. It is good to see that smile!