8/19/18 - Hungry Again

Today went better. Kind of. Well, maybe not. It went about the same as yesterday. I didn’t throw up as much, but I had to have more PRN doses of Morphine to stay comfortable thru withdrawals.  The reasons for not throwing up as much included that and the fact that the team stopped my feeds...as predicted. Ugh. So, now I am living in sugar water for the day thru my PICC line. It’s calories, but I’m hungry. It stinks. All of the same stuff from yesterday still applied today. Mom talked with my doctor about the whole situation and we have a plan we are all “happy” with. I kept the medicines down today, because of no feeds/no puking. That was good, because I kept the Methadone down and that keeps the withdrawals symptoms minimal. Good start. Now, tonight I get feeds again and they will build them up slowly, starting with a tiny amount (like should have been done in the first place). Hopefully, I can keep the feeds and the medicines down overnight and tomorrow, etc...

Now, if I can’t handle the feeds at all thru this new plan, they care team will re-establish my NG to an NJ tube placement. It will be necessary to get nutrition to my body...can’t wait too long, you know. If in the end I can’t handle the NG feeds, that will likely mean that I will end up with something called a GJ when I go home. A gastrostomy-jejunostomy tube (abbreviated as "GJ tube") would be placed into my stomach and small intestine. This tube would vent my tummy for air/drainage and to give me an alternate way to be fed. I’d use the J tube for feeds. So, I need a lot of prayers over the next few days to help me thru this stressful period. Ideally, I’d go home eating normal, but that’s probably not realistic. I would like to have just an NG, but I am not sure how the next few days will go. Hopefully good. Please be good. Hm. 

We got in all the snuggles we could today. I was crying and sad, so Mom scooped me up and we sat in the hospital chair in my room, next to my crib and we snuggled. I needed it. I couldn’t sleep all afternoon, but curling up and listening to Mom’s heartbeat and her rubbing my back and swaying with me side-to-side put me right to sleep. I had a long, deep nap that left me feeling comfortable and smiling in my sleep. Good Night. Talk tomorrow. -Heath

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