Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: June 18, 2002
BMT + 77: Homebound!
Robert knew something was going on when I pulled the hospital kid’s wagon into the room so I could load it up with all our junk and have it ready for Mark to take it down to the car. He went on a ride around the hospital ward in his sunglasses and baseball hat (just like a movie star). Nurse Beth was charge nurse and explained that Robert’s sunglasses over his mouth were not the same thing as wearing a mask.
When we returned to the room, I tried to load the car seat into the wagon but Robert thought it would be a better idea to sit in the car seat, all buckled in, just to see what might happen. He sat in his car seat for over an hour.
We did get lots of pictures of everyone there today. Robert’s favorite male resident doctors both came by to say good-by to him. I teased Sad about his new goatee but secretly I thought it made him look dashing.
Cara came in early for her night shift so she could see Robert before he left. We were able to get many pictures on the way out. We were quite a parade; Mark carried Robert, Nurse Abby carried Robert’s car seat, Dr. Koerper carried Robert’s VIP sign and I carried a bag and pulled the wagon.
The only sad part of the day was that I did not have time to see the Benders before we left. The phone rang most of the day and there were many people coming in and out. I hope the Benders know they were in my thoughts a lot. We owe them so much; they were the ones that suggested we ask for that great room (with a bed) when it came available and they were the family that suggested Robert wear high top shoes in the hospital (he was walking today; last time he didn’t walk for six weeks after returning home).
On our way home we drove down to Ninth Avenue and I ran in and bought Robert a Kid’s Meal with chicken and a diet coke. On the way home, he ate more than I have been able to get him to eat in three days. He had a piece of the chicken in each hand. I told Mark he would be a great poster child for Burger King and that some day he might be president of the United States or run Burger King. Mark said he rather see Robert do the latter of the two choices.
I am completely overwhelmed with the medications. Fortunately, we got home in time to run to the pharmacy for the medication they forgot to take out of their refrigerator. I was going to add to this e-mail a list of all the medications Robert had been on during the last twelve weeks. The list has 74 medications on it and I don’t think anyone of them has less than eight letters in it. I think I will ask Uncle Dan to scan in the list.
We are home and I still can’t believe it. Will life ever be the same? Death definitely came closer than I ever could have imagined it would. Prayer played a big part in Robert’s survival as did an excellent medical staff, Robert’s will to live and of course, Uncle Dan’s involvement (Uncle Dan, can I include all our friends and family that supported us?). Luck played a part too and that is hard to live with, one child’s luck and another’s misfortune. I am looking at JoJo’s picture right now and thanking our little angel friend for the life he shared with us.
Counts
