Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: July 10-12 2001
July 10, 2001
Personal update for Robert BMT-9
Last night was a little rough for Mark and Robert. Robert had to take a lot of the antibiotic orally. This meant 12 tubes of medicine and vital signs every 15 minutes. Also, Robert must have moved around a lot in the night and pulled on the central line either by twisting or actually pulling on them. There was blood on the pad around the opening. They had to change the dressing at 4:00 a.m. and again in the morning. The dressing changes are rough on Robert’s skin so we hope with the anti-fungal patch and a netting around Robert’s body to hold the line in one place, we will get by without a dressing change for four or five days. Robert wasn’t too interested in moving around much today. The child life specialist came by and the physical therapist. They will try and work with Robert each day to keep him more active. Robert’s aunt and uncle sent him some new crayons, flash cards a barrel of monkeys to play with. He sang “Ten Little Monkeys”. Robert ate well this morning but his appetite was poor this evening and his blood pressure was high. He was very active before they took his blood pressure so hopefully the next time they take it it will be much lower. Robert is sure getting tired of the oral medications. He says its night nighttime.
During the day when I was with Robert’s twin, Matt he was picking his nose and I told him how important it was for each of us to use sanitizer to keep our hands clean. I told him that he needed to use it because his finger was stuck in his nose. Matt said he didn’t need sanitizer because his finger wasn’t stuck.
July 11, 2001
Robert has only been interested in videos, peaches in the morning, and dry cereal for half the day. He has no interest in being out of bed. I think he is a little unstable on his feet and doesn’t want to use them. I have to force him to stand and lean on me. Grandma Jody and Aunt Sarah came by to see Robert and I got in a shower while they were here. I have been using the staircase to go to the cafeteria. It takes three turns of the stairs to reach each level. It is very good exercise. I am always winded by the time I get to the seventh floor. We have a room that would cost about $300 a night in the city. It has five beautiful rooms looking half into the trees and partially over the bay. They must have the most personable nurses and doctors here. They answer all our questions patiently and even write down all the medications for us. Robert hasn’t had a bowel movement since he has been here so we haven’t been able to use the butt balm. I think he may get some help tonight. Diane was asking for Robert’s address to send cards. E-mails are nice for Robert too. I can put them in a scrapbook for him later:
To write Robert:
Robert Stark (patient)
UCSF Hospital
505 Parnassus Avenue
San Francisco, CA 94143
July 12, 2001
Robert has refused to be very active which is unusual. When we were in UCSF last week he was running the halls. I was worried I would have trouble keeping him in his isolation room. He seems only interested in watching videos on dogs, horses or baseball. When the physical therapist came by we did get him to play out of bed for a while. His legs seem week and shaky. Today, it was an effort to get a shower. Since we cannot bathe in the room we have to go searching for a shower. Our nurse told me yesterday the general shower was broken on our floor, floor 7 and to go down to floor 6. Guess what was broken on floor 6, the shower. I went back to our floor and asked for advice. The advice was why didn’t I take it in my son’s room. I explain that that was not allowed. She directed me to the floor manager who said I could take a shower in the tub room. She and I went to the tub room and moved four pieces of furniture out of the way to get to a tub as big as a submarine. While moving the furniture I asked her when the shower on our floor would be fixed. She said let’s go look at it. We had to move another two rockers and a floor waxing machine but the shower did work.
I believe hospitals are designed just like homes, never enough storage space. I did enjoy that shower. Afterward, I moved all the equipment back allowing enough space to get into the shower next time with the equipment left in place. What’s the good of a shower if you end up all sweaty after you finish?
Today, Dan and Mom came by. We each were able to fit in lunch without leaving Robert alone and I even went on a short walk with Mom. Healthy family members can be so helpful. Dan will come tomorrow afternoon so that Mark can head home and I can drive up to UCSF once he is home. I think a lesson learned is to go up the week before to the hospital and learn the lay of the land; where the bathrooms are, all the ways in and out of the hospital, how to get to the cafeteria when the elevators take ten minutes each (I have never been in a hospital with a fast elevator-is there such a thing), what to do in case of a fire or in California, in case of an earthquake, to buy a parking pass, any good places to walk or hike, to set up physical therapy, schooling, to see if there are any volunteers to sit with your child while you run down to get a cup of coffee and to find out which rooms have the best view. I did call Orla, my BMT contact, the Friday before we were admitted to see if she could ask for a good room for us. I think she did help us get a wonderful room.
It may seem silly but when you know you will be there at least six weeks, I think it matters. I was pretty irritated with Robert today. He has started to fight me every time I give him oral medication. Mark waltzes in and Robert swallows the medicines without a sound. There is no justice for a mother. Maybe I shouldn’t blame Robert; he has to take four different syringes of medicine in the morning and at night. I am at home tonight and Mark is in the hospital. It is nice to be home and sleep in my own bed.
