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| So in early February of 1988 life was good. I loved watching my two babies together - they were way better than anything on TV two wonderful little people. I had two nursing shifts...8 hours each. But as time wore on, the nursing was scarcer. Nurses started calling in and not showing up or not calling in and not showing up. Later I was told that I should have known this would happen because from the very beginning they didn't show up for training....guess I'd know that in the future...live and learn! I just forged on. Sometimes not sleeping for days in a row. Danny had about 20 medicines he was taking then. All of them liquids. Sometimes I was so tired that if it weren't for the different colors of them all I would have messed that up bad. But I didn't cut corners, I lived by that careplan to the letter. and often I was so tired I was stupid It was scary when I felt my patience wearing out and didn't know what to do if they were both crying or bonking each other on the heads with toys or such things. They were beginning to show real sibling rivalry for the first time, although it never got real bad, I had no idea what to do about it. |
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| Everyday I was carrying all of Danny's machines out to the living room and letting him play on the floor. It was alot of work and I was the only one who wasn't scared to do it. |
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| Finally I just moved all his stuff into the living room so I could more easily keep an eye on both of them at once. I took to sticking them into his huge crib together when the going got rough or I had to clean tubes and stuff. Occupational Therapy made a plastic cover for his vent connection at the neck to prevent him from pulling his vent off (and trach out). But sometimes it scared me because he could no longer pull the vent off if it was malfunctioning. When a kid is active and on a vent THINGS can happen... specially with the exhalation manifold... and if he cannot exhale it messes his co2 all up. So it had it's advantages and it's worries. |
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| Grandpa and Grandma Lee still took Summer home with them alot. Danny started to get sick, needing suctioning every 15 or 20 minutes and with very minimal nursing it started wearing me out. Dr Eigen said he was too sick to be at home, but not sick enough to be in Riley, as his ventilator required an ICU bed and he wasn't really ICU material. soooooooooo.... In November of 1988, 9 months after I'd first gotten to take him home, it was decided that he had to go live in LifeLines Rehab for the winter's cold and flu season. which is now called St. Vincent Pediatric Rehabilitation Center as it didn't have it's hospital license when were were there in 1988-1989 I felt like I had failed. Inpatient to me in the past had meant 30 months, and this hospital was even further away, although it did allow siblings to come with parents on visits |
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| On November 21st of 1988 Danny was packed up and moved out of Riley hospital into Lifelines Rehab on the north most side of town. |
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| It takes 3 hours via city bus to get from 13th and Arlington out to St Vincent Hospital, and then you need walk about 4 or 5 blocks to get to Lifelines from there. |
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| my mother took the picture of me in front of lifelines with my head chopped off when she came from the UP of Michigan to visit at Christmas time |
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