Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 17, 2002

BMT + 76

Everyone I met in the hallway today said I hear you are going home tomorrow. It sounded so good. Robert was unhooked from his I.V. today and he tried to walk a good portion of the day (I think he will be very sore tomorrow).

The attending this week is Dr. Koerper and she does not round until 6:00 p.m. This has always frustrated me; this time I thought I was being so smart, I wrote a note in the morning to be given to her before rounds to make sure I had her answers after rounds. I did get my slip of paper back just after rounds and there was nonthing about the date we would go home but I though with all the nurses talking about it, it must be true.

The nurse coordinator, Kendra, came by about 3 pm. and told me we were going home on Wed. I said, no we were going home on Tuesday. She said they wanted to keep us longer because there were some medications Robert still need to try orally. I told Kendra she could have all night tonight and all day tomorrow and that we would wait to leave in the evening. Kendra said they also needed to teach us how to deal with an IV at home and I told her my note from this morning said no IV, that we should try it at home without and if it didn’t work we would be the first to admit it (I stole that line from Kelly, Bailey’s mother (thank you, Kelly)).

So we are going to go home tomorrow. A few prayers may help ensure our plans.

I have also enclose two e-mails, one from Aunt Michelle commenting on all the Power Ranger videos Robert and I watched yesterday and the other from Robert’s guardian angel, Cara, his nurse from his first transplant.

Dear Kath:

I don’t know which list looks worse, the drugs or the Power Rangers. Frankly, I’m surprised you don’t need the anti-seizure medication after the third or fourth video.

Glad to know you’re keeping your sense of humor.

Take good care.
Love, Michelle

hi kathleen and mark…

just wanted to let you know about something robert did last thursday night that was the cutest..

after i finished my assessment, i asked robert if i needed to change his diaper. it had been 20 minutes since i gave him lasix and i figured he’d have a little present in there for me. well, being robert, he gave me an emphatic “NO!” so i replied, “alright…i’ll be back in 30 minutes and we’ll change it then.” i pulled his covers up and as i did, he grabbed my right arm and gave me the biggest kiss on my arm. he mumbled something as he did it and i said, “i love you too, robert.” with that, he gave me the biggest smile as i left his room. all i can say is, that was worth far more than the money UC pays me! what a sweetheart!!!

i can’t tell you how happy i am that he is on the mend. hopefully i’ll see you guys monday or tuesday night…i’m on at night then.

take care

Cara

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