John Hopkins Hospital

On December 30th, Dave was transferred to John Hopkins Hospital in Baltimore, Maryland. The decision to move Dave here was not an easy one. This is far away from where they live and makes visiting Dave very difficult for Sharon and Dave's family. However, it was really important to get a second opinion and John Hopkins is a leader in neurology in the US. So on that day, Dave travelled via ambulance down to Baltimore while Sharon and Dave's brother Bob followed in their cars. Dave's brother Rick came down the following day. When Dave was admitted he was having problems swallowing and he was running a fever. They feared that Dave had aspirated on something and this was causing the fever. He was given a high dose antibiotic and a naso-grastic tube was inserted. Until the swallowing issues resolved, Dave cannot receive any food or drink by mouth. For the first few days that Dave was at John Hopkins he was very sick, however the fever did break and he started showing some signs of improvement.

One of the first things that they did at John Hopkins was another spinal tap. Based on that they were able to see that protein and WBC levels in his spinal fluid had gone down, which is a really good sign that the plasmapheresis and IViG that was done at Lehigh Valley had worked however based on his symptoms he was actually worse than he was at LV. They quickly ordered another round of the IViG and confirmed the diagnosis of BBE. Again, confirmation of this diagnosis is good news. All research that you can find on the internet points to complete recovery or recovery with some risidual symptoms, recovery being the important point.

I was in Baltimore January 6th thru the 9th. I met Sharon, Matt and Katie the evening of the 6th after they had been at the hospital that day. They were all very positive as it had been a good day. Dave was communicating with them and answering questions as best he could. It is important to note that even though his speech and motor deficits are severe he understands what is going on and can follow your conversation. I was unsure what to expect the following day when Sharon and I went to the hospital. I relieved when we went in to see Dave that he looked good. His color was good and his eyes were clear. He did not recognize me at first but that is understandable as he doesn't see me that often. By the end of the day he knew it was me and he was able to respond to me when I asked him questions. On the second day of my visit, Dave had a more permanent PEG tube inserted for feeding and he was much the same as the day before. Sharon and I were able to talk at length with the Drs and learned that they really feel he is a good candidate for rehabilitation however felt that he needed subacute therapy rather than the acute therapy. We spoke to them about what Dave's body is doing to iteself and how to know when it stops so that recovery can begin. They were honest and said they do not know if that has occurred yet. They felt that Sharon is extremely in tune with Dave and that she is the best gauge of his progress without doing another invasive spinal tap.