Visit #2 To the ER

I sometimes don't know why I bother to even post. It doesn't change anything, except to ease my mind and to vent a little about our experiences. Somehow, I believe writing about it is somewhat therapeutic, even if it doesn't help her to feel better. Feel free to skip this one as it may be long and drawn out. I just want to give you the picture of what we went through dealing with these people in the ER.

The Beginning:

Yesterday started like any other day, except she has a virus. All morning long she was crying and overall very fussy. She has never been like this. I couldn't put her down. She would fall asleep in my arms and I would go to put her in her crib, and all of the sudden she would wake up screaming to be held. She also would not finish any bottles. I would give her the option of eating a full bottle, and she could not finish it, so I would just hold onto it for an hour and then give her the rest. This was hard because that meant I was feeding every hour instead of every 2. So at 9:00 I fed her and held onto the bottle. Her Dr suggested giving her tylenol for fussiness and so we tried it. Up until this point she had no fever. I was actually able to lay her in her crib and she went to sleep! (Thank you makers of Tylenol!!!) I picked her up at 10:00 and sure enough she had a fever. It was a slight one at 99.1 but thats after having had the meds. So, I watched her and she was less fussy, but still had to be held for the most part and still wasn't eating right. So I called the Dr at around lunchtime to let them know what was going on, just in case. They offered to go ahead and admit her, but I was confident that I could handle it at home.

At 3:00, after her feeding, she threw up. I was beside myself. I panicked, because I was already feeding every hour, so its not like I could really wait a little bit to feed her. So I shoved some Oral Glucose Gel into her mouth so that her Blood Sugar wouldn't drop, and I called the Dr. I didn't hesitate, I just said we are on our way to the ER, and we are going to need the D10 IV. (concentrated glucose) when we get there. Well, of course I had no clean bottles, so I had to rush to get them washed so that we could have some food to give her, and knowing that the hospitals have no Portagen formula on hand, we usually bring our own. So that gave me time to get her stuff together for the overnight stay. We arrived there just about in time for another bottle, and she held it down. And she kept every bottle down for the 3 hrs we were in the waiting room.

I would have been really upset had she not been able to keep things down and we were still in the waiting room with no D10. So, we go back in the back and she sees a Dr. We speak to the him and he clearly did not know what LCHAD even was. Then he proceeded to ask me if I had ever, in all of this, checked her BS. Of course I hadn't because she had been eating all day so it would be ok. He patted my shoulder and said "this is when you would need to check her Blood Sugar". As if I don't know when to check it and what I should do. She wasn't right, hadn't been for days and I was at my wits end!! So condescending!

To make matters worse, we have an emergency management letter stating what should happen in the event of an Emergency. Of course, they did not follow the letter. She never at any point in the visit received D10. I was also aggravated because her Ped said I could call him on his cell if we had any trouble or if I just had questions. Well his phone was off! I would have been more understanding had he not said to call him. So I had to go over his head and call Dr Marble. (Whose suggestions always involve a long, drawn out hospital stay.) I finally got the ER Dr to not rely on the On call Dr from the Peds office, who we have never seen or even met, and got him to phone Dr. Marble.

The End of the Road:

Her labs came back normal and showed a slight elevation of her Ammonia levels and her lactic acid levels, but I don't even know what that means. So, after having spoken with Dr Marble, I knew she wasn't in a metabolic crisis because she had been eating all day, in pieces, and keeping all but one feeding down. He did suggest we keep her there for observation and to be seen by a GI Dr.

We took her home. I just made the wrong choice in bringing her in. I was exhausted from doing this for 3 days and then feeding her every hour, I made a desperate attempt to have a quick fix, when there is none. The fact of the matter is, she is sick, doesn't want to eat very much very often so if we have to feed her every hour, so be it. It keeps her out of the hospital, where the risk of further infection is always higher, and I can always call someone if we have a problem.

Day 2

Today she is much better. Patrick and I fed her through the night, every hour and finally at 5:00 she took the whole thing except for about 5 ccs. Which is hardly nothing and won't really matter. She took the whole thing at 7:00 too. It is such a relief. I am still exhausted, but knowing that tonight, Patrick will be at home with us the whole summer and can help out is what is getting me through.

Conclusion:
I am not good at making decisions especially when I am exhausted and just want her to feel better. I should have called and insisted someone come over to help me instead of trying to do it all by myself. I know I have a family who would help out, and a very central group of friends who could help out too. At what point am I going to understand when to take her in and when to manage at home? All I want is a healthy baby. I would give anything for her to be normal. It has been the toughest week yet as a parent. I am hoping today proves to be a much better day than yesterday.