First hospital visit for Lydia

Well, we had made it almost 3 years without a hospital visit for Lydia. But in mid-January, she was on the verge of a metabolic crisis and we had to take her in. She woke up in the morning and had a fever and then threw up. Since she hadn't eaten since dinner the night before, we were immediately on high alert because she was already pushing the time limit, without the added factor of throwing up. We gave her two hours and during those two hours we tried to get her to eat popsicles, fruit snacks, applesauce, chocolate chips-- ANYTHING to keep her from going to the hospital. But she refused to eat and threw up two more times at the end of the two hours. She was starting to fade and so I jumped into the car with her and Matt stayed home to hold down the fort.

Besides the vomiting and refusal to eat, I could tell that she was borderline crisis because she refused to walk, was lethargic and cranky, and was very tired. I ended up carrying her into the ER (I was 35 weeks pregnant) because she couldn't/wouldn't walk. Knowing that we were under some serious time limits, I showed the ER clerk her emergency protocol letter right when I registered her. It only took about 10 minutes in the main ER waiting room before they called her back to triage. Back in triage I showed her emergency protocol letter again, and they immediately moved us to the Pediatric ER.

Her emergency protocol letter basically tells the hospital staff exactly what to do-- what her IV bag is supposed to be full of (D10) and the rate at which is pumped into her (1.5x the normal rate). It also gives specifics on how she isn't supposed to wait EVER for care, how checking her blood sugar is not a reliable method of determining whether or not she is in a crisis because hypoglycemia is a late indicator and how she needs to be treated immediately. It is a very, very important piece of paper to us-- so much so that we have one in each car, one in an "important documents" location, one in my diaper bag plus I carry around a USB drive with a digital copy.

When we got back into the Pediatric ER, no one had told them about or shown them our protocol letter. After 20 minutes of waiting where Lydia was becoming even more somnolent, I approached the nurse's station asking if they knew she had a metabolic disorder and if they'd seen her letter. They said they didn't know and hadn't seen her letter. I didn't know where the letter was at this point, but I had my USB drive with me so I handed it to them. They said they would check it and to go sit back down.

Also on the USB drive was all of her most recent lab work, immunization record, her geneticist's contact information (I also keep the geneticist's business card with me), her most recent records from her regular pediatrician and anything else I think is pertinent.

1 minute later they said they were prepping a room for us! That's what the protocol letter does. If we'd had to wait the normal wait time of an hour or two, Lydia could have started seizing or become comatose. The letter guarantees immediate action which can save her life. The charge nurse later praised me for the USB drive because she said that it was amazing to have all of Lydia's medical information available immediately.

So they took Lydia back, started an IV and the doctor came in. He was kind of laissez-faire about the whole thing, saying things like, "Well, we'll start D10 when we get a hold of the geneticist" (they were just giving her saline) and "she looks okay, just tired". Knowing how quickly she can decompensate, I suggested he read the protocol letter and also verbally outlined the steps her geneticist would want him to take. To his credit, he listened to me and started the IV with the D10 running right away. Good thing too, because he didn't get a hold of the geneticist for 2 hours and Lydia would have been in serious trouble by then.

She perked up quickly with the D10, but the problem with the stomach flu is that in order for her to not go into a crisis again, she has to be consuming enough calories on her own. She ate a popsicle but refused everything else, so they admitted her.

The next 30 hours were pretty boring-- we were just playing the waiting game of seeing when she would start eating enough on her own. Because MCADD is a rare disorder (1 in 15,000 in the US) we had a lot of visitors who wanted to know about MCADD. All of the residents came to ask, most of the med students and we even explained some to the doctor on call. He knew what it was but had never had a patient with MCADD before and was surprised how quickly she perked up with the D10.

Lydia did okay. She was pretty emotional and absolutely hated the IV (which she called a her "sharpy"). She basically pretended her hand with the IV just didn't exist, which Matt said was really normal for children. Matt and I switched off (he stayed with Lydia during the night so that the hugely pregnant lady could sleep in her own bed) and the other girls were really worried and sad about Lydia. She cried when I left, she cried when Matt left, she cried when her sisters left, they cried when they left, they cried the first night when she didn't come home-- it was really tough.

The next night, she was almost cleared to go home when she threw up again. We were SO disappointed! However, Matt was able to convince the staff that we could handle it from her on out, since she hadn't thrown up the whole day (except for the early morning). He convinced them to discharge her so she could continue recovering at home. I think they probably would have said no to other parents, but we were so knowledgeable about MCADD and Lydia was acting normal again and had no fever, as well as the staff knowing that Matt is an RN, helped convince them we could manage it at home. So we only had to stay in the hospital for one night, which was SUCH a relief, especially since I was back in the hospital 2 weeks later with Auggie.

I just have to say that the hospital staff was so great. They listened to me and followed my instructions when they couldn't get a hold of her geneticist. They were gentle and happy around her, they brought her toys and books to play with, they made her smile and acted very quickly.

What a relief! I was so worried about her first hospital stay but all my worries were unfounded. We were grateful for how it all played out and that Lydia recovered so quickly.

Things That Slither

Snakes abound in Georgia. I have seen many different kinds at this point. I've seen copperheads and king snakes while running. In fact, several times I have almost stepped on a copperhead and I've had to jump out of the way really fast. The time I saw the king snake I didn't stop to examine whether it was a king snake or a coral snake....I got out of the way first! But it was just a king snake, so I went a little closer. We've had a black racer in the back yard. Black racers aren't venomous, but they are super duper fast and have very sharp teeth.

We were lucky enough to have a neighbor that caught a copperhead in a bucket after a rainstorm and brought it over to show us shortly after we moved to Georgia. He wanted to make sure we knew what they looked like because they are very common around here. 

Last fall we saw this teeny tiny snake on our front porch. The snake is called a Ring-necked snake. The one we saw was probably about half-grown; full grown these little snakes are about a foot. They are venomous, but it isn't enough to harm humans. They're typically very reclusive so it was surprising to see one during the day on our porch! It was a neat little thing.

Also last fall, we were outside playing in the evening and all the neighborhood kids (including mine) came running because they had found a snake underneath the tire of a neighbor's car. They were getting really, really close to the car trying to see the snake. I didn't know what type of snake it was, but told everyone to back away until I could figure it out.

Turns out the snake we had found was a half grown cottonmouth. Cottonmouths, also known as water moccasins, are extremely venomous! And aggressive! And fast!! I immediately made all the children promise to stay away from the car. I took a picture though (with zoom!!).

I actually really like snakes and think they're cool....but only if they aren't venomous!