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| So...in August of 1989, we put him back in the hospital to be observed while the vent rate was weaned. He had been getting 28 breaths a minute from the machine and it seemed like he would have a mess of problems every time we turned it down even 2 breaths! So it was a tricky situation. But...because he had been continually pulling the tubes off at home and throwing them away and sometimes even hiding so I couldn't find him to put them back on, we decided now was the time to try to do something about it. |
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| Keeping him contained was becoming more and more a problem. I guess he'd been kept in bed for so long that now that he was able to get around a bit more he was going to take full advantage of the situation. |
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| (small P.S. for any vent people reading regarding the bucket and tubes in the background here....in the old days.. we washed all our tubes and suction catheters and other equipment every Mon, Wed & Fri...now all of that is one time use, disposable) So after Riley thought he'd do OK without it, we came home without our day vent for the first time. He was put on an oeco @ 40% (oxygen concentrator) He was put on oxygen blow-by in the day and ventilator at night. he did OK for awhile, but then started to have some problems. he'd crawling down the hallway, he'd get to about the middle and stop and breathe real bad and turn all sweaty and looking like his Co2 was way too high. I'd get the ambu and 'puff him up' manually and he'd do OK for awhile, and then the same thing would happen again later. So...back to the hospital for more testing. |
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| this time he'd be allowed to do normal activity...trying to repeat the things that happened at home to catch what was causing the problem. Then...after much tests and xrays and bronchoscopy and such, it was decided that he had tracheal malaysia and would not be on blow-by oxygen, but be put on a C-PAP in the daytime. We were lucky tho, because some kids have to be put on the octopus looking machine with half a million PEEP valves on it that you saw near the playpen in the earlier picture. But since Danny's positive air flow only had to be on a PEEP of 6, we got to use a dupaco valve on our oxygen concentrator |
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| so he could still have the really long tube instead of needing a closed circuit and being tethered to a machine again like when on the ventilator. So now he would be on C-Pap in the day and the ventilator at night. This page is 'Summerless' because it involved many many trips in and out of the Emergency Room and hospital so either her dad or her grandparents came to get her when it got this intense. |
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