Part 3: Grant stopped eating / ER

This post is part 3 of Grant's eating disorder issues from this summer. You might want to read this and this first before this entry.

I don't like to be over reactive, but I really don't want to be under reactive when it comes to my son's health and well being. I have been accused of being over reactive to things and it doesn't feel good to be judged this way. So I was being cautious as Grant was losing his weight. I called his home care nurse constantly and eventually conversations turned into what ER to go to and exactly when I should make that call. She explained that this is ultimately up to me and I hated making that decision.

Same thing started to happen with his social worker and psychiatrist. This is the ER you should go to; this is what to say when you sign in. But, I still didn't understand what would happen if we went.

I had an appointment on June 30 and I waffled on keeping it or not. I kept it because I just couldn't decide if this was the day I was going to take Grant to the ER. I believe I cried through parts of this meeting as it was yet another appointment about my son. The man left and I was at home with my son's PCA. Should we leave? Is it the time? What if I am over reacting? What if he starts to eat today because he is so hungry? My mind was racing. I was starting to shake. How am I supposed to make this decision?

I called some number at U of MN Masonic. I had been told to go to Fairview, but I was being led to U of MN website with my "googles" and it was super confusing. Were they the same place? Where do I go?

I finally called Scott. I had tried some junk foods with Grant, but he wasn't going for it. He hadn't ate all day. He had maybe less than 200 calories the day before (if that) and just as little the day before that. He was 54 pounds on my personal scale. He was smashing his head in with his fists. He was scary skinny. We decided to take that leap as a family. It was time to get more help than this. "This" was not working.

I cried as I contemplated this decision. I didn't know what I was considering. What were my options? I offered him pie. It went all over his body. We put him in the tub. Now he was naked. Sort of tasting wet pie out of the tub. It was gross. It was weird. Would he eat? No. Not really. It was time to leave.

"K" (my son's PCA) watched Grant as I struggled to keep my composure. I tried to imagine what I needed for a trip to the ER. I packed minimally. I struggled to pack everything I might need for one day. What does one pack? How long are we staying? I don't understand what is going to happen now.

K offered to stay with me. To drive all the way downtown even though her home is no where near the metro. I cried happy, grateful tears for her real friendship. What angel is this? Her genuine concern for me and Grant is unmatched. I wiped tears away as I said, "no thank you". I can do this. But, I really couldn't. I think I cried all the way downtown. My skeleton of a son sat next to me.

I let my parents know where we were headed and I still ended up at the wrong place. I checked into the adult ER as I had been instructed. They asked, "Are you here for his SIBS or his malnutrition?" I replied that I was there for both, but apparently in ER world you can't be. So they sent us to the children's side of Masonic (U of MN) and we were going to address his obvious medical needs. This only made sense.

There is a lot of waiting in ER's. My parents arrived before Scott. Grant made it hard to tell his story. He likes to scream, flay around, hit me and generally be uncooperative because I can't pay attn to him and talk to an adult. He also doesn't take well to people that are not extremely confident in their ability to handle him. It didn't matter really. He was 52 pounds on their scale. I read later he was less than 1% body fat. It didn't matter what I said, it was oobvious something had to be done. The ER dr tells me what they are going to do, but I have no idea what he said. I agreed. I signed the papers. I knew they were going to sedate him and take him now. They were ready. They are going to use Ketamine. I heard that. I went to dinner with my parents and my husband. I wanted to cry big snobby, disgusting tears. I did a little crying, but inside it was more than what I actually wanted to do. I shoved it down. I'll save my tears for another time. I didn't understand what was happening. I needed dinner. I needed to breathe.

It's a quick procedure. He got what is called an NG feeding tube. It's not really a big deal because he wasn't awake for it. He woke up after a short 30 min nap. He had a tube taped to his cheek. NG stands for nose/ gastro, if you didn't know that already. His arms were in restraints. He was shockingly not dehydrated. They explained that he had starved himself long enough that they were worried about something called "re-feeding syndrome". Again, I didn't understand what they were saying at the time, but I do now. They were trying to tell me that they couldn't give him the calories his body really needed because the fear of putting his body in overdrive. It's like being extremely dehydrated. You can't just start chugging water. Your body can't handle that. So you take it slow. REALLY slow. We were in the hospital for 8 days watching for Refeeding Syndrome. Watching his response to formula and water. He had to prove he could handle this. I slowly understood all of this as we missed 4th of July and stayed there for that week. Our family and friends came to see us. We had saved his life, but we didn't understand what would happen now.