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| At lifeline, Childlife had been alot more active with Danny than every before. He had spent his life in ICU's where survival of the kids is first and foremost on everyone's mind. And kids were never allowed to be near each other due to infections control. So he had alot to learn some of it was fun |
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| We were working on communication for the first time and trying to see if he could remotely gain some social skills, as he had only dealt with adults and Summer up until this point |
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| some of it was NOT so fun! The standing frame was a part that was NOT fun for him another new situation and he probably felt oh so trapped I didn't have them put in for a Medicaid prior approval to get us one because he had been attempting to stand a little bit on his own and I was sure that it would soon come and buying a standing frame would be a real waste of money. Luck would have it that a different kid had a collection of them in his garage and one was just right to fit Danny so we just borrowed it. |
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| Danny spent alot of his time at Lifelines waiting for Mommy. I think he was actually a depressed baby. Sometimes I would go in to find him with his little legs hanging out of the crib rails just sitting there staring at the floor and that was real hard for me. I never saw alot of other parents there... in fact I don't remember seeing any... I don't know what the situation was for them, but I know I was alot lonelier than I'd ever been at Riley because there were parents EVERYWHERE there and they always had a story and sometimes the story was alot worse than the one I had. Also another fact was... Danny KNEW what real "HOME" was now... before he had never experienced what it was like to have mommy put him to bed every night... but he had learned so it was hard for him to be left alone each night and sometimes two days in a row Lifelines was a good place, and I was grateful we had for Danny to go to, but it was just a real hard experience for me |
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| Then the time came. We had to get up really early that morning and Summer was so sick of being on city bus that it took alot to get her motivated and out the door. We had trained a whole new batch of nurses from a new agency because the last one I'd had didn't work out so well. The next one provided me with alot more of the hours I was allowed and we didn't have near the problems we'd had the first go at being home. I was reduced from the 16hours a day I'd had the previous discharge to 12 hours a day this time...so one nurse could cover the shift each day. I don't remember much about that training. I think I just had to check off before we left since I'd done it all before. One thing I do remember was that I had been the one who had taught them about Danny's custom made bavona trach tube and they still insisted that I check off on changing his trach...duh! by that night my babies were happy again Danny could stop waiting for mommy and Summer could stop being on a bus 6 hours a day and being put in such super controlled situations and I could rock BOTH my babies to sleep at night! |
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| Danny never stayed in any hospital as a resident after this time, although we did spend A GREAT DEAL of time going in and out of Riley when he got sick |
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