12.10.17 Wound VAC18

Fairly quiet day yesterday. Aimee is tolerating  slow increases in pedialyte and is now up to 20mls an hour. She did have a dressing change done on her PICC line, but otherwise only the routine care. 

One positive is that Ed and I were able to write a list of requested day and night nurses for the charge nurse. We won’t always get these nurses of course, but with how much we have been here lately and the complexity of Aimee, they will do there best to give us repeats. It has been already less stressful with this in place for a few days. 

Thankfully we will have one of our requested nurses today when we leave Aimee here at the hospital for the first time. Angelique, Aimee’s cousin who also spent time as her caregiver, will be here too. We are heading home for several hours to have a 6th birthday party for our favorite Caleb. It is going to be a group effort with everyone bringing different elements of the party. How thankful we are to have such loving family and friends to help us throw a party in the midst of this. It is super important to Caleb and thus to us. I really wish Aimee was coming home with us. It will be so hard to walk out the door and leave her here. 

On a funny note, the other night one of the residents on Aimee’s team came running into the room out of breath because he had seen in the computer that we were discharged. The hospital is nearly at max capacity right now and, with the chaos, some errors are being made. It was mostly comical in this case, because he had just been in the room less than an hour before while Aimee was having her cecostomy flush done. He thought we had run out the door after that I guess. 😆 Aimee’s meds were canceled from the pharmacy that night too, so someone must have mistakenly marked the wrong room number as discharged.