November 1st, 2015
Happy 12th Birthday Emmett! It is so hard to believe Emmett is 12 years old today! Today we celebrated our Emmett and showed him how much he is loved! Happy birthday to our now big guy!
My last entry was in June, and no news has not meant things are fine. We keep plugging along and take one day at a time. Emmett's seizures unfortunately didn't stay away in June. In fact, they got worse and changed in appearance. At that point in time, we were still trying to decide what to do for a neurologist. Emmett had appointment the end of July at Gillette for his Pamidronate infusions, so I called and also set up a neurology consult. Well our 3 day infusions turned into a hospital stay. Emmett was directly admitted from the neurology clinic at Gillette. He was hooked up to the EEG electrodes for 5 days, which showed status seizures, not good. Emmett went through a few medications trials in the hospital, but none were helping much at all. Finally a combination was doing the trick and Emmett was able to go home after 7 days. However, when we got home, the seizures came back in full force. Ever since we have been juggling many different seizure medications with dosage changes constantly to try and reach a point of stability. There have been a few stretches with relief throughout the months, but for the most part, Gillette Triage is on speed dial. In order to get the seizures to subside, one of the medications had to be significantly increased. This made Emmett very lethargic and he could barely keep his eyes open all day long. The beginning of October found us going back to Gillette for a clinic appointment and again many medication changes, which leads us to the last three weeks. Over these weeks, the medication making Emmett so sleepy was being decreased while a new one was added and increased slowing. Everything seemed to be going well until severe agitation started yet again. Since Emmett has a history of C-diff, we had that checked to rule it out. Well, it came back positive. Just great, another bout of c-diff, but at least an answer to the agitation. However, we weren't so lucky. Even after two weeks of treatment for the c-diff, Emmett continued to become progressively more agitated with each passing day. I talked with the neurologist last week and some medication changes were made again thinking one of them may be the culprit. Saturday I thought Emmett was doing better, but today he has gone downhill fast. It is now midnight and he is miserable. I really don't know what to think at this point.... which med is making him like this?? could it still be the c-diff?? is his brain in status seizures but not showing clinical signs (that unfortunately is what my gut is telling me)?? I just took some video of Emmett and emailed them to the neurologist to look at hopefully first thing in the morning.... will see what tomorrow brings.
If you are still with me.... we still had a really special day celebrating Emmett's birthday
. We did get lots of smiles despite everything he is feeling. That is our boy... such a brave trooper! Today our focus was cake, kisses, and cuddles with the birthday boy! Happy 12th birthday to a very special guy! We love you Emmett!