5.29.18 ER visit

Aimee has been having some return of digestive issues with bloating, pain, and gas. She has been retching some days and had a couple instances of difficulties with her cecostomy flushes. Last week we took her in to the registered dieticien who wants to substantially increase her calories again and to redo bloodwork. We put off the first recommendation for now, due to the distress she is already experiencing. Increasing calories would mean increasing rate and causing more stress on her intestines. 

I’m glad we waited, cause Sunday it all came concerningly together. She was with her nurse all day and when we came home the nurse was worried. Her farrell bag contents (draining from her stomach) was bloody and she had vomited several times the same dark bloody color. There have been days with some blood flecks, but never near this amount. Her abdomen was bloated and very sloshy. I called the GI doctor on call and they asked that we bring her down to be seen in the Emergency Department. Because we had called ahead, the doctor had ordered several tests, had a nurse assigned, and registration was expecting us. It made the whole process very smooth. In only 4 hours we had an IV placed, panels of blood tests done, ultrasound, x-ray, and video x-ray performed. All appeared consistent with previous examinations, which was reassuring. They concluded that it must be a bleed somewhere in her GI system, but they didn’t know where it originated. They gave us specific instructions of what to keep our eye on and when to bring her back. They prescribed a higher level reflux med, hoping that will resolve the issue. We got to bring her home and now have to troubleshoot her daily routines from here. 

I’m disappointed as this medication is one I had weaned her off of several years ago due to its effect on nutrient absorbtion. She was maxed out on the lower level med though, so we have to at least trial it for a couple weeks to see if it helps. 

5.18.18 Good Reports

A few key updates to share for Aimee. 

First, her bloodwork finally is showing her carbon dioxide levels have decreased back to her own version of normal. This is really good news and a big relief. 

Second, concerns have been expressed during recent appointments about her left hip. Repeat x-rays show that her hip is still partially out, but has not progressed noticeably in the past 6 months thankfully.

Third, not so good news, her right elbow has lost 10 more degrees of extension in the past 6 months. Although her left elbow is worse, her right is the one she uses to touch, explore, ext. Her rehab doctor asked that we at least meet with the orthopedic surgeon to discuss a lengthening procedure. We will see them at the end of the month. I think it may be a difficult decision. We really don’t want her to lose any ability she has to engage. We also really don’t want to put her through any surgery, even minor, if there isn’t a clear benefit. Hopefully talking with the surgeon will make the choice obvious. 

Aimee continues about the same. She has some good moments where she is energetic, even hyper. Most often she is tired and staring, unengaged. We’re fully enjoying all the good moments.