There have been some developments with John's progress lately so I wanted to get the word out about how he is doing. I mentioned previously that John has been having significant rigidity and some spasticity in his muscles. This has made it extremely difficult to walk and even eating has been hard for him. Swallowing requires a lot of muscle control and John had begun choking on his food. He was seen by a specialist who gave him medicine to help and has begun to improve however there was concern about how to help him long term.
John's primary physician decided to send him to see if he might be eligible for a trial medication which would be helpful. Rather than me try to explain it, here is the information about this trial:
"The baclofen pump system is the intrathecal (directly into the spinal fluid) method of delivering the medicine. The system consists of a catheter (a small, flexible tube) and a pump. The pump — a round metal disc, about one inch thick and three inches in diameter — is surgically placed under the skin of the abdomen near the waistline.
The pump stores and releases prescribed amounts of medicine through the catheter. The pump is refilled by inserting a needle through the skin into a filling port in the center of the pump. With a programmable pump, a tiny motor moves the medicine from the pump reservoir through the catheter. Using an external programmer, your treatment team can make adjustments in the dose, rate, and timing of the medicine.
Patients must return to their doctor's office for pump refills and medicine adjustments, typically every two to three months. The pump is taken out and replaced at the end of the battery's life span, which is usually five to seven years."
He will be going to the doctor on Monday February 22 and at that point they will perform some tests to see how he responds to the medicine. If the results are good then he will be scheduled for the surgery to place the pump in his body. Our hope is that this will provide John with much needed comfort and enable him to thrive in all aspects of his therapy and his life.
John's physician mentioned recently that with the rigidity that John has been having, it is difficult to measure his progress and of course, there is the constant fear that he is not receiving enough nutrition and fluids because since John is having difficulty swallowing, eating and drinking is an arduous and time consuming process. As you may remember, John had some kidney issues in the beginning of his hospitalization, so it is critical that he is receiving appropriate amounts of fluids.
Another issue which is easy to overlook is how John is feeling from an emotional standpoint. Since it is difficult for him to talk and since his short term memory has not returned yet, we must rely on knowing him and what he does tell us to get a compass reading on how he is. Of course, Holly is best at this...she can tell what he is thinking and feeling almost without words but other caregivers have had to take extra time in making sure John is okay. We have been told that depression is common with folks who have brain injury and it is underdiagnosed as a complication. Many times, the focus becomes keeping these patients medically stable and their emotional stability gets put on the back burner. Holly takes John somewhere every weekend. Either they go run errands together or they go to church or they go eat. Last weekend, they went to Hudd's Galveston beach house and it is these outings which help with John's morale and he lights up when he gets in the car!
John is currently still at Mentis Rehabilitation Facility however we are once again on the search for the next place for John. Insurance requirements only allow for so many days at these facilities and we are rapidly approaching a deadline for this level of care. I should mention that if you have never dealt with insurance providers, it is a maze of paperwork and requires a voracious reader to figure out all of the parameters of care. This process requires almost daily phone calls to providers and can be extremely confusing. Holly has constantly stayed on top of all aspects of John's care including making sense of John's benefits. We have been helped along the way by SBISD thankfully and the human resources department has been exemplary and specifically Vicky Louis. Everyone has been helpful and we know that wherever John goes next, it will be the perfect place for him to continue progressing and healing.
I will update with more information after John's appointment and in the meantime, let's keep our fingers crossed!
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