8/18/18 - The Shakes

It was a rough day. Rough night. I started the NG feeds into my tummy last evening and into the night. We aren't for sure, even though Mom talked to my doctors, why the care team decided that starting me on full and continuous feeds would be a good idea? It didn't work out. I threw up all evening, thru the night and even this morning. They finally made the decision to change to small bolus feeds and work up to full feeds. This is always how we have done this in the past, so it was very confusing and frustrating. Mom was so worried about me choking on vomit. That possibly, my nurse would miss me for a few minutes and I'd choke. It's a fear. Then, to know that I was puking and upset...one, she wasn't able to be there to be my Mom and care for me thru that difficult period. That was a gut wrenchingly hard pill to swallow for her. Secondly, when I puke, I get upset and when I am upset I have a hard time getting cooled down and comfortable again. So, that would mean, if my nurse couldn't calm me, I would get Morphine PRN. I did get Morphine PRN a few times thru this all. It isn't even my fault, not my body's fault. I got it (I haven't needed it lately at all) because I was a normal, upset baby that was mad because I puked. That's something that most people don't understand about being in the hospital. They save lives here, yes. It's no place for a baby, though. Babies like me cry and if I am upset, I get medicated...I am not in a normal baby situation. I was better this morning, mind you...high on Morphine. 

Eventually though, thru the day, with the help of my Mom and my Bro-dude sticking up for me, the care team made some great changes. The care team always pulls thru and my girlfriends and bro-dudes are the best, but I'm just having a day guys...I did well on the small bolus feeds and I think we have the vomiting under control. I think I just need some time to build up to full feeds. It's been a long time since I've had food in my tummy, you know? I wasn't vomiting just because of the overload of milk, though. We think the fentanyl withdrawals are contributing to it. I came completely off of the fentanyl drip last night. It was fantastic news, but the consequence of a quick wean from medicine like that, is that the withdrawals hit pretty hard. Now, fortunately and unfortunately, the Morphine PRN does help with that. But, I don't need to keep getting Morphine, which is also something I struggle with. It's a no win situation at the moment, that only time can resolve. The withdrawals from the fentanyl being shut off have hit me today. I have the shakes. I visibly tremble and it made Mom tear up trying to comfort me today.

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No one my age should ever have to got thru this type of thing. A lot of us little people do though. It's tough and takes a lot of bravery. I am brave though. I had a rough day and Mommy loved me thru it. I couldn't help but cry, though. What a weird thing to cry about? I have been thru so much worse. Thru barbaric procedures. Yet, the closer I get to hearing the "H" word being said, the harder it is to struggle at all. We have hope now and that makes the journey scary. Hope is great. Hope is scary. Hope gets me to the "H" word though. Hope. I got back to smiley Heath late this evening and was able to play a little with Mom. I smiled thru my adversities; like always. It does work. A smile goes a long way. Even though the day was a rough one, I am comfortable now and keeping food down. The withdrawals are seemingly giving me a break; which is nice. So, thru the night tonight I am going to work very hard to tell my body to calm down and that things with pass with the withdrawal symptoms. I am brave and strong. I will do my best to keep my food down, too. I need sleep tonight after today. Please pray for me, my family and my donor family. Good Night. -Heath

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