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| So for most of 1989 it was me and the kids. When we had a nurse I'd take Summer places and when we didn't, we would all stay home and play with toys with Danny. |
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| Summer and I still visited Lona (or Londa as Summer called her) at the Ronald McDonald House whenever we got a chance. |
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| Danny was really starting to get around and trying to stand up and even climb a little bit. |
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| So I went to Circle City Fabrics and bought a queen sized foam mattress and had it sliced and covered the pieces with sheets to make a huge playpen. If he over extended the reach of his tubes to the ventilator he'd pull his trach right out of his neck and we'd have a slightly panicky situation on our hands. So I worked real hard at trying to prevent trouble before it happened. |
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| We improvised alot. Specially at bathtime. Sometimes it was just too much of a pain in the butt to haul machines down to the bathroom or try to bag him with the ambu... so we brought a bath to him. |
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| I could let Summer play outside if she stayed right on the porch where I could see both kids at once. |
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| She liked to go to the Children's Museum, so I bought a year pass and we'd hop the bus and go over there when a nurse came over to watch Danny for us. |
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| Danny didn't go to the hospital sick very much while he was still on a full time ventilator. But it was getting worrisome to the doctors that he was still fully ventilator dependent. The way Broncho Pulmonary Dysplasia works is that a child out grows the damage that the machines caused to their lungs when they were small by growing new lung tissue ...BUT... if they are still on a ventilator and oxygen, then the new lung tissue also gets damaged. Danny's lung problems are caused by the massive scarring that occurs when highly concentrated oxygen is pumped into his lungs at a very high pressure... sorta ripping the tissue into rawness from the constant force it took to keep him alive and oxygenated when he was smaller. Altho his settings were much milder by the time he came home, it was still not as gentle to lung tissue as natural breathing is. |
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