Alone in the hospital: Our first night

July 2, 2016 – This note I wrote originally for a select group of friends and family members on FB. At that time, I wasn’t sure how to process or share this.

If I haven't yet told you, we are at u of m Masonic right now. Grant was admitted yesterday into peds ER for anorexia, self-injury and aggression. He is being treated for his self-imposed malnutrition. His weight was around 54 pounds which is around the 10th percentile for a 4'6 child. He was sedated and given an IV and an NG feeding tube (nose). He was almost immediately moved to the room number below. His arms are restrained so he won't remove feeding tube. This part is proving to be the most challenging now-As he doesn't understand why his arms are hidden. Grant is being fed very slowly to avoid refeeding syndrome. Which is unbelievably scary disorder that can be caused after a person starves like this. Please Google for more info if you desire. G is projected to be here another 3-4 days. The plan is to go to pysch unit for medicine management once we stabilize his body to a certain degree. I am unclear how much they can or cannot help me with all of the issues we are contending with and so we will see what the next stop will be after this. I have him on 2 wait lists for hospitals that will be hopefully even further beneficial to grant. One is in Willmar, MN and the other is in Baltimore. I will use this medium for updates as I can. I am finding texting to be too daunting, but do not want to feel alone on this journey either. We are sleep deprived and stressed out. And somehow that's saying more than my typical levels of both... Love you all.

July 2- 2nd update

Grant will not being going to pysch now that a new theory of being gluten and/or casein intolerant is being proposed. I am more unclear of our next steps than before. He is doing really well with his feeding tube.

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What I didn’t tell most people, was that on the night he originally went in, I had one of the worst nights of my life. I met my parents and husband at the hospital. We quickly ate dinner and then reacquainted with Grant. He had been sedated to get his feeding tube. When he awoke, he spent a significant time getting sick. I let Scott deal with it as it bothered me more than normal because a nurse had a suction device to keep him from choking. It was simply too much. My job was to tell his story. To find a way to get the doctors to understand how unbelievably bad this had gotten.

He didn’t stay in the ER long. Once he was stable, he was exhausted (basically sedated from the meds) and he was wheeled in his bed upstairs to his room. I didn’t know we would be there for 8 days. I hadn’t packed enough. We had already been there hours. My parents eventually went home. There was nothing to do. He had passed out early and we didn’t know how to do this. One single bed, one reclining chair and one sofa that was supposed to become a single bed. How are we supposed to do this? I wasn’t thinking. I figured he would sleep through the night. He was crazy knocked out. I sent Scott home. I thought to myself, why not? Where would we all sleep? Scott had to work the next day. I am the teacher. It’s summer. It’s only right that he feel good so he can work tomorrow.

I think I feel asleep. I don’t remember when. But, it wasn’t enough rest when I awoke around 2 or 3 am that night. And when I mean awake…I mean - sit straight up awake. He was ready to go and he was hysterical. He has no idea where he is, he has both arms restrained in what I later learned are called “no-no’s”. He has an IV hook up and NG feeding tube taped to his cheek and something attached to his toe to monitor (hmmm, I am not sure what thing was for). So if he moves, there are literally 2 machines that must follow him. I sit up and jump on top of him. Doing my best to calm him down. But, it isn’t working. Nothing is working. He is attacking his face with these 2 stiff arms. He is swatting me with what are basically baseball bat arms. Every time he goes to hit himself, cords are flying around. Machines are sliding around with every hit. I can’t contain him. He’s too large. I am too out of shape to keep up. He is manic, crazed. There is no reasoning with him. He is screaming at top volume and crying.

I can’t. I can’t. I am trying so hard to keep him in bed. I am so scared now. Is he going to rip the cords out of his arms? I don’t know if I can do this. I can’t reach the nurse’s button. I can’t….I can’t do this. I am trying so hard now to contain my own feelings. I am anxious. I am so scared. Why isn’t Scott here with me? Why am I alone? What was I thinking letting him go home?

I do finally reach the button. I have an amazing, young man come to my rescue. I later learn there are 2 levels of nurses and he is a nurse assistant. I am truly grateful there was a male nurse that night. He helps me. He lets me lead. I am sweating now. I am self-conscious. Regrettably, I am wearing a V-neck shirt and because I was asleep; I had on no bra. I could not hate my attire at this moment more. I can’t change. I can hardly breathe and stay up to Grant. The 2 of us struggle to contain him in any spot in the room. Rolling around. Trying to be graceful. Restraining, losing him. We can’t calm him down. The young man eventually gets Grant’s nurse. This eventually leads to another one and another one. Hours pass. I have 5 or 6 nurses with me now. They are amazing. We discuss, strategize, they say nice things. I reassure the nurse’s that it’s often like this. One lady apologizes for Grant. This stings. I don’t know why. Another level of grief. He doesn’t understand. But, we can’t take restraints off either.

We discover in Grant’s mania, he has made the IV move enough that he has some bleeding. It’s not bad and they are contemplating the next move. Do they put it in the other arm? Do they discontinue the IV? She looks at his charts. He is calm now. He is staring at the IV. Every nurse is around his single bed. I am too. He is between my legs. We are holding every limb down. He is curious about this thing. He is no longer upset. A nurse has started to sing. We discover counting, soft talking and maybe the massive level of attention is helping. Or maybe that he is worn out from the fight. This is working. She decides because he is not dehydrated that we no longer need the IV. Thank goodness. Another machine is put away.

I don’t remember the rest of the night.

We were up for hours. I don’t know what meds we gave him. I don’t remember where I slept. I remember texting Scott in the middle of the night. I was angry. I was emotional. I was shaken deeply by it all. I was alone and I hated it. I felt like shit. I hate being sleep deprived. Just writing this down has made me tear up re-living this night. Grant loves his dad the most. I hate when we prioritize our jobs over our needs. I hate all of this. It could have not been avoided. It could have gone better…somehow.