Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: July 16-17 2001

July 16, 2001

Robert BMT-3

Robert is not doing well. His fever is between 103 and 104(40.4), his 02 has been dropping and they are blowing oxygen on him. His heart rate is over 180 and he is breathing very fast. His respiration rate is over 70. They brought down a portable x-ray machine to take a chest x-ray. Fortunately, the x-ray had a negative result. They are also running cultures to hopefully rule out any viral infection. Both Mark and I talked to his father (the doctor) and he said don’t panic yet. He said we should have about 30 days like this before we are finished. It is about 10:00 p.m. and we are waiting for the test results.

July 17, 2001

Robert BMT-2

Robert had a tough evening last night. He did not do well on the ATG. His temperature was very high, his heart rate was up to 180-200 and his respiration was 55. He had Tylenol four times last night. After being started on 02 and the completion of the R-ATG at 11:00 p.m. he did much better.

When the doctor did rounds this morning he told Mark they would change the steroid and double it. They also started Robert on antibiotics. They don’t have the culture results back yet but they start antibiotics as a precautionary measure. Dr. Mentzer also decided to slow down the R-ATG to half the rate and twice as long.

So far, the changes seem to be working. Robert’s heart rate is between 120 and 130, his respiratory rate is 42 and his 02 is 99%. The bad news is that we had to put an I.V. in his arm because he needed too many medications flowing at the same time for the next 36 hours.

The I.V. did not go in easily. Just before we started the power went out and everything had to go on battery back up. Everything came back on in a few seconds. Then the experienced nurse couldn’t get the I.V. in his hand. She tried twice but both nurses said he had curved veins in his hands, which means there is not a straight enough vein in his hand to be used. She finally had to go in through the inside of the arm. This worked but half way through taping him up I asked if they were using plastic tape, which Robert is allergic too. We had to redo all the tape.

Robert must be feeling better; we switched from Dinosaurs to dogs to guess what, Angels in the Infield. We are going to end the evening with the dance scene. It is midnight so I hope I won’t have to rewind too many times.