4.10.18 Last Month

It’s been a month since I posted an update to Aimee’s friends. I keep waiting for things to settle completely before I post, but it feels like every few days it is a different challenge or a new positive. Aimee has made the rounds through a lot of appointments this past month. We had med changes, new equipment, progress and decline. 

Here are the highlights. 

-In positive news, we were able to increase the speed of giving meds from 1ml a minute to 1ml every 45 seconds. Doesn’t sound like a huge change, but with 156 mls of meds each day it reduces us from 2 hours 36 minutes to 1 hour 57 minutes. 

-Her seizures seem to have responded to a medication increase, which seems to have allowed her to be more alert again. 

-About half the time, she seems to have the light in her eyes again. She still spends most of her time in bed now. When she is out of it very long, she gets uncomfortable and distressed. She has returned to school a few hours a week (as much as possible between appt days) and is responsive and engaged there again. 

(Playing at school)

(Classmate reading her a book)

(She loves having snuggle time with her brothers)

-She had her GJ tube replaced in the Interventional Radiology room and that was successful. 

-We were able to do a slight increase of calories and she is regaining the weight she lost over this past 6 months. 

-We also were able to get a decent enough mouth x-ray finally at the dentist. One of her baby teeth still hasn’t come all the way through and I was concerned that there was an issue there. She also has quite a bit of gum overgrowth probably due to medications. All is well for now according to the x-ray, so that is a relief. 

-In negative news, we met with her GI doctor and we are disappointed to see that that her function has declined on both ends. She is still requiring continuous draining of her stomach via farrell bag. She is being fed continuously through the j-tube into her intestines for fluids and nutrition. We had hoped that she would recover the use of her stomach, but since we have seen no progress, the hope of that is slim. We have had to continue her on a low dose of antibiotic 3 times a day to stimulate motility. We have also had to concentrate her cecostomy flush dramatically, as well as, using an adult dose enima. It is working again and she spends 75 minutes every day getting that done. It seems that everytime we increase in this area, she does well for about a month. If this trend continues, it is very likely that we will need to divert and surgically place an ostomy. 

-With her pulmonary appt we did labs to check carbon dioxide levels, which were higher in December than her average. The test results came back even higher still. 

-Aimee has had several respiratory illnesses, but having the nurse here has been a great help in keeping her at home. First, because it gives us a break, but also because the nurse is able to help us monitor risk. She is also really good at getting out mucous plugs! :) 

-We did not continue with the night nurse. It was not comfortable having a stranger take care of Aimee during the night or having her in our home while we slept. We decided to follow our gut on that and discontinued her hours. 

-Aimee’s back is looking good, though she does not seem as straight as she did post surgery. We are noticing her pelvis is tipping more and more, which seems to be causing her whole body to twist. At the moment this means we need to monitor her skin closely to ensure that the extra pressure does not cause sores to develop.