Sat. September 19, 1999
Hello all....
What a day we've had. Rachel came home Saturday afternoon and here we
are, still in Topeka.... a minor miracle concerning that when we left KCMO
her immune count was still zero, nada, zip! Last night we got up every 2-3
hours to check her temp. If it hit 101.5 we'd be on the road to Children's
Mercy Hospital. The stress was heavy but all afternoon and evening we were
all at home with Rachel.... a very quiet evening but very enjoyable. The temp
got as high as 101.2 but never made it to that unhappy number.
Today we had a home nurse from a local hospital come out to the house at
4pm. We've had nothing but problems with a local hospital all along. The shots we
have to give Rachel daily (these can't go in her Hickman catheter) were
prescribed a very particular way by Children's Mercy directly to a local hospital...
The hospital's pharmacy screwed up everything. I went to work a couple hours Sunday
late morning but was miserable the entire time. I hate that feeling of complete
helplessness and felt that the local hospital was doing everything to make it worse. Monday
I was going to have to go to Stormont and explain all to them.
The pediatrics home-care nurse arrived to watch us give the first shot.
When she arrived it was to witness a tidal wave of emotions.... Rachel, sick
and tired of pokes and needles flew into a rage... all the anger and fear
came out of her... primarily the fear. I sat there at her feet while she sat on the couch with the shot
mechanism in hand, Diana was holding her and the nurse was by us... watching the whole drama play out as Rachel screamed out her fears and refusal to take any more treatment from anybody. Rachel (like most kids) listens real well to adults. And she watches how they act. She well knows the gravity of this disease. I thought my heart was gonna break.... I've never hit such a low in my life.
The nurse calmly said "This isn't going to work." She took the shot mechanism from me and asked Rachel if she wanted to go outside with her and sit on the porch.... going outside is a NO-NO so we were all shocked.
Rachel said yes. They went out the door. They were out there a long time. Finally they came back in... Rachel was all smiles. The nurse told us that the shot had been administered with no problem... Rachel had given herself her own shot. You could have blown me over with a feather.
The nurse explained that just like at the hospital we needed to let Rachel control as much as possible of her own treatment. If she feels she has a hand in her own destiny she'll make it. Once again we were in awe of this child... I've said it before... I'll say it again.... She is my hero.
The nurse listened to our story of how the local hospital pharmacy had incorrectly interpretted the directions of the Children's Mercy pharmacy, noted how the shots were given to us, not as
Children's Mercy had specified (she had to change the medication from a too large syringe into a smaller one at our house) and she said she would work with the pharmacy and our insurance company tomorrow on the problems.... a big weight off our shoulders.
It's about 8pm and Rachel is still here. We have our fingers crossed. If she can make it her out-patient trip to KC will be Tuesday.
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An amazing little story... thought you'd all like it.
later
Bill
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