Our First Visit to the Hospital

Evangeline began vomiting at 9:00, last Friday morning. In case you may not know, there is much significance when an LCHAD baby vomits. Since she cannot process Long Chain Fats, she She needs to eat frequently to keep her Blood Sugar high enough so that she doesn't enter into a hypoglycemic state (which can be very dangerous for any baby; causing developmental delays, mental retardation, and much more. Although it does have to be extremely low in order for that to happen)

At this point, I wasn't too worried. She had spat up before and usually her Blood sugar was at a relatively good point, at least until the next feeding. Well, at this time, we were on a feeding schedule of 2 oz every 3 hrs. So I waited until Noon to try and feed her again. Well, she vomited again. So I gave her about 30 min and attempted to feed her the rest of the bottle. It was at 12:30 that she vomited a 3rd time. I was starting to worry. I, of course, knew I had to prick her little heel and see what her Blood Sugar was. When I checked, it had reached an all time low of 62. Having been educated on LCHAD, I knew that if it reached 60 we were to go directly to the hospital and on the way give her some oral glucose gel. This is to temporarily raise her sugar levels. We are supposed to give 15 grams. Well, I tried and it went all over the place. This sticky substance went all over her face and all over me too. Come to find out, the 15 grams is for a child not an infant and the little that she got raised it up to 93, Praise God.

We got to the ER and we got registered. I gave them the protocol letter from Dr Marble, her specialist in New Orleans. Of course they read through it, then gave it back to me. This letter states that # 1, when her sugar gets that low, we are to go to the ER. #2, when we get there, they are supposed to IMMEDIATELY administer an IV of D10, basically a really concentrated dose of glucose.

Now at this point, she had not eaten, effectively, since 3:00 that morning. With any other child this would probably be ok, but not for an LCHAD baby. She was basically starving and had no fat to sustain her. So, it took them 2 hours to give us something. At this point they actually decided it was best for her to receive pedialyte and send her home! I was outraged. The letter specifically gave orders that they were obviously not following. I gave her the pedialyte, so she wuld get SOMETHING but at the same time was on the phone with the specialist. Luckily, we had his cell. He was pretty put out because the ER had not bothered to call him about her. He had to call up there and have a heart to heart with them. I was very grateful. She was still crying and I could tell she was hungry but there was nothing I could do. To shorten the story up, it took them about 4 hrs to get the IV in her, which we should have received immediately. We stayed there until about 7:00 at night meanwhile, earlier, we had begun to give her 10 ccs every 30 min. This obviously was not satisfying her. She was so tired and very hungry. It was so hard to sit there and try to console her for hours, knowing that she was so miserable.

Her pediatrician, Dr Vaughn, decided to admit her to the hospital to try to figure out why she was vomiting. They ran all sorts of tests on her, including some for her heart, to rule out myopathies (heart muscle disease) See with LCHAD, undigested fats can build up around the heart and eyes too. We were relieved to find that he heart looked normal. These tests will have to be repeated routinely.

We thought we were going to get to go home on Sunday, but Dr Vaughn ordered one more test to see if she had reflux, and Praise God she did. We had a small problem but it is easily fixable. She now on Reglan 3x a day. We were able to go home at about 3:00 Monday Afternoon.

She had a slight relapse yesterday and vomited 2x after the 9:00 am feeding. I was nervous because we just got out of the hospital Monday and I definitely did not want to go back. So I called up Dr Vaughn and he told us to modify the feedings again. This helped tremendously, even though it is exhausting feeding every 30 min. But, anything to keep Evie from going back.

One of the hardest things about this is knowing that at any point, we could end up back there. It could be for vomiting again, or an ear infection. It could be literally anything. The odd thing about her condition, is that she looks perfect. Aside from being small, she is fine!

I would not trade Evie for any other child. She is beautiful and definently a gift from God. I heard another mother say that she was grateful that God chose her and trusted her to watch after such a special baby. I am having problems dealing with this. And, forgive me for saying this, but I have asked, "Why us?" I am just determined to love her to the best of my ability and give her the best life possible. We may not be able to buy the best things for her, but we will love her unconditionally.