Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: September 30, 2002

BMT + 183

As many of you are aware, Robert has been in and out of the hospital for the last three weeks, with more time in than out. The doctors now believe that the line infection he had in early August never completely cleared. Staff Epi can hang around inside the line or at the cup of the line just under the skin. Antibiotics can dampen it and there can be a negative culture but it never really goes away. The last three stays have probably all been related to the line infection.

They finally decided to pull the line early this week but decided they should run a CT before they removed it because they could do contrast with the line still in.

On the way into the CT scan, the doctor on at the time, Dr. Lee, said the culture from Robert’s lines came back positive again. We were lucky. UCSF was able to coordinate the CT scan with pulling the line and putting in an IV while Robert was under anesthesia.

The CT scan showed a herniated diaphragm that will need surgery at some later date. The surgeon said we should get a warning if it gets worse; Robert may start throwing up. Robert can’t throw up with his fundoplication, or he might complain of stomach pain. This is not likely because he has never complained before. Temperature could mean that the herniated area might be getting worse or it could be related to something else.

Robert also needs a tooth pulled; the root is dead. And he needs a cavity filled.

After almost three weeks in the hospital, I don’t know what we would do without the Benders, Mom and Uncle Dan. Robert can be perfectly happy in the hospital with a TV and VCR dedicated to him but Mark and I need exercise and sometime away from the hospital. It is easy to get depressed and lonely in the hospital without some time away from the room.

I am also seeing this in the other kids; they cannot have friends over unless Robert is in the hospital. They feel isolated because spending time at friend’s houses is a reciprocal thing. They each have friends that have parents that go out of their way to include them and I hope that they know how appreciated they are.

After two years of this semi-isolation, we are all feeling some effect of it.

The exciting news is that one of the current council members lives about four blocks from us and she has two donkeys. I am just so thrilled that Allyssa may have a way to get her “animal fix” without having one of her own. We cannot bring a new animal into our lives until Robert completes his isolation.

So the big, big news is Robert has no central line. This means no dressing changes, no saline syringes, and no heparin syringes. He can take a bath; go to the beach, etc. They may wait a few weeks and put in a port but we have to wait and see.

Robert pulled out his feeding tube Sunday night. He had put on 5 pounds while using the NG tube for four months. Dr. Horn said we could try it without for a week and see how he eats.

So now we do not have a line hanging off Robert anywhere. You better all be dancing and jumping up and down right now.