Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: July 19 2001
Robert BMT Day Robert’s new birthday!!!!
Today was the day! It was a little bumpy along the way. The doctors decided it would be best to fix Robert’s central line today. They felt that every day they waited was riskier because he will be even less able to fight infection tomorrow. They bundle him up and took him down to surgery with Mark. Mark became his medical and nursing staff for a while. The plan was for Robert to be kept isolated in pre-op and be brought back to his room for post op. Great idea in concept but in reality there was no separate room and Mark had to try to keep everyone away from Robert in the pre-op area before surgery. Once the surgery was completed they rushed Robert back to his room and again Mark became Robert’s hospital staff.
Robert has been doing much better. He is now off the R-ATG and that helps. They have also been giving him Lasis (I am not sure of the spelling), a diuretic to remove water from his system. This seems to have really helped his lungs. They seem to be working a lot less than they were on Monday. Dr. Lieuw also said his lungs sounded great. On Monday his 02 levels was down to 90, his heart rate was up at 200 and his respiration rate was around 90. Tonight his 02 levels were 95(100 at l liter of 02), his heart rate was 98 and his respiration rate was 28. And he slept through the first hour of the bone marrow transplant.
Many have said the Bone Marrow Transplant is somewhat uneventful. Robert’s was kind of festive with three doctors, two nurses, Mark and myself. I had butterflies in my stomach for an hour before. It felt ritualistic watching this deep red blood flowing into Robert’s central line from an I.V. pole.
I hope and pray that Robert’s donor has some wonderful things happen to him in his life. To save the life of someone you do not know has to be the true sign of altruism.
The pulmonologist came by and asked the nurse to draw blood before the BMT to test Robert for allergies. I pointed out to the doctors in the room that any allergies Robert might have would be gone after the BMT. Afterward any allergies he has will be allergies his donor has given him.
The Bone Marrow Transfer should complete around 1:00 a.m. Mark thought I should leave before the end to drive home. Now we just have to pray Robert can make it easily through the next two weeks.
