9/13/18 - Try, Try Again

Last night, I was still not getting anything to eat. The care team hooked me up to some IV fluids to keep me hydrated, though, and I still got my medicine in my tummy. I threw up once, I think? So, much better than the other night. I am getting half a dose of Seroquel again (once a day, instead of twice a day before they took it away). Still think that withdrawals from not having it (and being cut off cold turkey) are to blame for all of this mess. The care team doctors seemed to be almost apologetic for the issues and said several of the withdrawals of that medicine (nausea, vomiting, intestinal upsets, insomnia, etc…) were/could be contributing factors to the trouble I had the other night. I was doing great with feeds until they discontinued that medicine. We all want me off medicines quickly, too, but it didn’t work to come off of that one so fast in our opinion. It could be anything else, too, though. So, we try this all again…

Mom called the hospital this morning to check in on my, like usual. My brodude for the day was here. He said that during rounds, the team had thought they would place an NJ tube back into my nose today to begin feeds. It was frustrating to hear that. So, when Mom got here, we were able to visit with some of the doctors and work out a plan that we were happier with. The new plan is as such: today, we started giving my tummy food again thru the G tube. Just a small amount to start. Then, if that goes well…that’s the ideal situation and in theory, the Seroquel replacement helped. If G feeds do not go well, the team wants to move ahead with the NJ and get me my feeds that way. I wouldn’t get a GJ yet, because I am too little, so they would send me home with the tube in my nose instead (NJ) and the G tube wouldn’t be used anymore. It seems like I went thru the G tube procedure for nothing then, because it could take a while to wean off of the NJ and to G Feeds. I guess, we will just wait and see what happens here with the re-try of G Feeds. We’ve made it admitt that we want to take this slowly.

So far, since about 4pm or so, my G feed re-try is going well (15ml/hour). Hopefully I can keep it up with no pukes. Please pray extra hard! I was feeling well today overall and played, did Therapy and snuggle and snoozed with Mom. I’m trying my hardest to stay happy. To get thru this. The bad news is, that I am not coming home for a while longer now. I’ll keep you posted on this stuff as we know more.

So…highs and lows, but I try, try again…and again…and again. I never give up. Good Night. -Heath

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