Muscle Spasms- She continues to have these although they don’t seem to be as frequent with the help of additional medications.
Speech- Kelli tries to communicate with sighs, grunts, and smiles although they are very rare anymore.
Medications- She continues to be on Prevacid, Neurontin, Baclofen, and Valium. One Fentanyl patch was not enough for pain so we had to go to two patches. She is now also on the Paxil for anxiety and Clorazepate for anxiety and spasms. When the pain is intense, we alternate Lorazepam and Oxydocodone to try to make her more comfortable.
Feeding tube- The feeding tube itself is working well and she continues to have regular bowel movements without Miralax. Beginning around July 4th, Kelli began throwing up. We thought on that occasion it was a virus and it did pass after two days. But then she began to throw up quite frequently here and there.
Breathing- Kelli is on oxygen now. Her breathing is very abnormal and at times is very loud and labored. This is from a combination of her medications as well as the disease.
Eyes- We don’t know how much Kelli can see anymore. Many times her eyes are not focused and she is not able to track an item.
Drooling/Mucus- We continue to use the suction machine to help with this.