November 5th: Day 51

Yesterday, they went down on Benjamin's vent settings, both the oxygen and the rate...they are also weaning his pain/sedation meds (narcotics) and his seizure medication is going to be 'auto-weaned'...basically, this means they will keep his dose the same as he grows, so eventually he will just outgrow the med and hopefully not need it anymore. So with these things, he is going thru withdrawal from the narcotics, and they expect he is going to be much more touchy again. He's basically detoxing. Last night Tammy was able to get his head mid-line and he actually tolerated it quite well. We got to have a period of awake time with him that was about an hour and a half which was great. We just talked to him, sang to him and read him some books. He really seemed to enjoy all of this. Benjamin's blood gases are not quite what the Dr's would like right now, as he is holding on to excess carbon dioxide. So today, they are going to replace his NG tube and also flip him onto his belly for the first time since before his surgeries. Hopefully this will help him get rid of some of the carbon dioxide. His chest tube is lessening in the amount of fluid it is putting out...if it doesn't drain anything for roughly 48 hours, they will consider removing it. Also, yesterday, his mucous secretions increased again...so they are doing cultures from his trach tube and his broviac in his leg to rule out infection. I'm assuming this will mean he will be in isolation for the third time until the cultures would rule out anything contagious. So overall, he had a more bumpy night after we left...hopefully, he will have a better day today. I'm just glad we got to enjoy some time with him yesterday while he was quite comfy. I will update more when I can.
Kel