From: “Smith, Dianne” Dianne.Smith@mpls.frb.org
While we were in the hospital, Jenny received antibiotics for fungal, viral and bacterial infections. They do this immediately, because it would take too long to identify what kind of infection is causing the elevated temperature. This way all of the bases are covered quickly.
Jenny became very remote, just stared blankly at the wall and wouldn’t speak. It was very scary. We had her room filled with doctors and students from the Neurology department. When they left, the room was quickly filled with doctors and students from the Infectious Diseases department. Many tests were done, including an EEG (which was normal), an MRI (which was normal – there is a small cyst on the lower portion of Jenny’s cerebellum, but it was there 2 years ago on an MRI and hasn’t changed in appearance so it is not considered a problem). And, lastly, a spinal tap was done. They did the spinal tap right in Jenny’s hospital room with local anesthesia; they took 6 vials with 2 cc’s of spinal fluid in each. These vials were then sent to various laboratories around the country to test for a number of infections. To date, 4 of the labs have indicated that the results were negative. This is a blessing. We could tell by the serious nature of the conversations we were having with the doctors, that any one of these conditions would be a major problem.
Finally, on Thursday, August 12, the CMV test came back negative. Jenny was becoming more alert and she was more responsive. She was anxious to go back home and we agreed that we could take care of her from that point on.
With all of the tests that were done, everything came back negative and we couldn’t be happier — our bottom line is to have Jenny healthy and happy.
Jenny is more quiet and tired than she’d been before the toxicity. When we’re not in clinic getting blood, platelets or meds; Jenny just naps or watches the “Backstreet Boys”. Her counts are extremely low as a result of the gancyclovir; her white blood cells are at 1600 (they were at 4800). We have been giving her the GCSF (cell stimulating factor) for a week with the hope that it will jumpstart her WBC count.
Yesterday she had a reaction to the platelets she was receiving, shaking and chills. The nurses sent a sample of Jenny’s blood and the remainder of the bag of platelets to the lab at the U of Mn to determine the cause of this reaction. We haven’t heard the results of that.
As we were leaving the infusion room, Jenny tripped on an I.V. pole and twisted her left ankle. So instead of leaving, I took her down to x-ray to have the ankle x-rayed. Nothing was broken, just muscles/tendons stretched. So we were given the go-ahead to leave with a wheelchair. When we got outside, my car had a parking ticket on it (and an order to tow it!). Can you imagine?…we just had to laugh! We got out of there in a hurry.
Overall, progress is extremely slow….but, each day is another day closer to a complete recovery. Jenny’s 281.3 mannosidase enzyme level keeps us encouraged and determined to have a successful bone marrow transplant.
Please continue to keep us in your prayers and thoughts.
Love,
Steve, Dianne, Jenny and Jason
