2.2.24 Adventure DeVoes Adventure

We did it! We counted down the days and made it to the day. We packed up Aimee’s entire world, transplanted her a few hours south for a 2 night stay, and then safely returned her to her original location. Whew. 

The trip went so beautifully well. Much better than I could have hoped. It was quite a feat and I am really proud that we were able to do it, with major help from Ed’s parents. The palliative/hospice team was just in awe. They have never had any families do this trip before and Aimee is their most overall complicated patient. 

Aimee did incredible, especially on the first night. She was even smiling with the excitement of our arrival there and enjoyed time by the pool. The younger 4 spent every possible moment having fun making memories. They played in the water for hours, played games, and spent Christmas money on souvenirs. The staff was truly accommodating, kind, and helpful in every way possible. Most of all, the delight of packing up everyone for a family trip… it was a treasured gift. 

Ed and I did have a major concern while we were there about drainage and redness at Aimee’s central line site. It cropped up the second night we were there and gave us quite a scare. We decided that, if at all possible, we should avoid changing the dressing while we were in such a public setting. We had plenty of supplies with us to do a dressing change and we thoroughly cleaned all the surfaces that touched her supplies, but changing the central line dressing must be done so carefully. Everyone in the room has to wear a mask and we have to be as sterile as we can. Waiting until we got home to change the dressing has probably prolonged the irritation at the site, but I think it may have prevented a more serious infection. Thankfully the drainage stayed minimal. We are seeing some improvement there, but it still doesn’t look as pristine as we like to see. 

Here is a little photo dump of our adventure.