ER visit- October 2014

We were sent from the neurologist to the ER- read the start of the story here

I wish I could say the ER visit was painless and went smooth but that is definitely NOT the case.  It was horrible.  I thought if any hospital ER would be okay handling it, it would be University of MD but I was so wrong!

When we got downstairs to the pediatric ER, they got us right back. During registration they had bubbles, Hunter loved them. That is where the good stopped. 

I gave them his ER letter and the neurologist called ahead so they should have been prepared to handle us. They stuck Hunter at least 6 times in attempts to get his blood drawn and IV with d10, the stuff that's gonna keep him out of crisis set up. Once they finally got that done he sacked out and slept for a few hours. When they came back they told me his blood work came back normal and we could go home. We were there because he wasnt eating... he still hadn't eaten anything. I was ready to get him home anyway and put this day behind us.  Then they came in and said "Dr. Green said as long as you think he has eaten enough you can go home" ... Well I know he hasn't eaten enough. I told the nurses that! 

Nurse: we don't know what he is supposed to eat?

Me: 27 grams fat and 1200 calories

Nurse: well we don't know if he has eaten enough

Me: He's had 300 calories and about 1.5g fat... 

Seriously, how much more exact can I get?  This conversation took place at least three times. My dilemma was I didn't want to be there... but I also didn't want to make the wrong decision for Hunter and have us end up back in the hospital tomorrow in worse condition. So I cried, I cried for the nurse to get one of his doctors on the phone and let me talk to them. I cried because I didn't know what the right answer was, I needed someone to tell me what to do and no one in that ER could tell me.  So LCHAD binder in tow I went out to the nurses area and cried again asking the doctor to get someone on the phone. Either Hunter's geneticist Dr. Greene, his genetic counselor or even his nutritionist. All of which work out of the University of Maryland. 

Finally, a doctor who had a clue came in. She understood LCHAD (which I think anyone can understand LCHAD if they take the time to listen to what it is) I expressed my concerns if he is supposed to have 27 grams of fat and 1200 calories a day and he has only had 1/3 of a banana and 2 fruit cups what happens when they unhook his IV (which has sugar in it which his body is turning into energy)  and he runs out of energy? How far will what he has eaten really get him today? Will he wake up tomorrow? Is he going to make it home tonight?  The best thing about this doctor is she listened, thought about it and came up with a logical plan.  She told me to go up to the cafeteria and get him food he likes and we will see if he eats it. If he eats and I feel comfortable we can go home, if I don't feel comfortable or if he doesn't eat they will keep him on 23 hour observation. This plan made sense to me so I agreed! We unhooked his IV so if they was keeping him full he would have a chance to get hungry.  I ran upstairs and bought just about everything I thought he might eat.  & it worked! He ate an entire banana, some mac n cheese and a few bites of a chicken tender. 

With that we signed our discharge paper work and ran out of there as fast as we could!