9/12/18 - Spoke Too Soon?

Mom started that 24hrs stay ordeal last night. The point of it, is supposedly to have my parent(s) show they can handle the medicine schedule and care properly for me. Mom thinks it’s demmeaning and that they don’t have a right to judge parents. My parents brought me into this world to love me and they do. They will do anything to keep me comfortable and happy. She thinks it’s insulting, the “prove you can parent” 24hr hospital stay. Of course, it’s not like that, but it still feels wrong. My mom and dad have driven 202 days without falter, to see me. That is 47,470 miles so far and counting (that’s about 790 hours in a car). So, yes…it feels insulting. But, she called into work for Wednesday and when Mom got home last night from visiting me, she showered, grabbed a few things and turned around and went right back to Milwaukee to start the 24hrs “test”. The care team shuts the monitors off and she took care of me all night alone. Made sure I was cared for and gave me my medicines. No big deal, until, I started throwing up…

I was in a great mood, but so sick all night. Mom was worried, but the nurse just said she’d been passing the information along to the doctors and they weren’t alarmed. I continued puking up milk every hour or less. It was horrible. Mom would clean my mouth out with a spongey to get the icky taste out after each puke. That made me feel a little better, but I was so sick that I didn’t sleep at all. I also threw up my medicines. This was incredibly frustrating, because now matter if this 24hrs stay ordeal was happening or not, my care team should have stepped in at that point and helped me. Mom held her cool, somewhat, until the day shift girls came on and she told my girlfriend that she was done with the “test”, because someone needs to care for me medically now. It was out of hand at that point, the pukes. So, we stopped my feeds and gave some medicine to my tummy that should help me relax; it did. I was able to rest enough to keep my main medicines down and that helped a lot. We weren’t sure why I began puking, because I have been handling the G Tube feeds fine until last night? A few things did change, that we hope are the reason for the pukes. I had just come off of a medicine called Seroguel. The medicine was used to help me when my withdrawal symptoms were very bad; it’s for delirium. We didn’t think I needed it anymore, so stopped it, but maybe I needed to wean off of it slowly? So that was a thought.

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The care team sent me down to Radiology twice today. They had me examined to make sure that my G Tube was in the correct place and that my bowels were moving correctly. I guess they found I have reflux happening. The stuff from my gut is going back to my tummy for some odd reason? It’s weird because I’ve been doing well with my feeds until last night. Hopefully this is all just a result of making changes too fast, but we will see? It’s just weird? I was in a great mood again, after the pukes stopped this morning, so that’s good to know that I don’t seem to have pain. No fever, that’s good. Just so sad about it. This is just what happens every time something good happens…I have setbacks. The team will get things under control and fixed up. I just want to eat, play and be merry…go H. Someday…this will set us a back a little. It’s okay though, because at least it’s happening while I’m still inpatient. Please pray for me. Pray for my comfort and for things to clear up. Pray I get better soon. We read your messages every day, too.

Hoping tomorrow is a better day and I can start feeds again. I’m going to be so hungry (I am getting IV fluids at least). Better than puking though, I suppose. Thank you guys for the encouragement for me and my family. For the prayers and love you send me, my family and my donor family. -Heath

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