After a small *incident* we now have all of Landon's medical "personel" on the same page, Thank God. We made a trip to the ER on Sunday after Landon ran a 102.5-103 degree fever for a day. To make a long story short we called our Pediatrician's on call service and explained to the lady that answers the phone and then again to the nurse that called us back that Landon had a specific metabolic genetic disorder and we needed to talk to our Pediatician. Well, they told us no! So I called the Geneticist on call and they had us go to the ER to have him looked at, because as I learned your metabolic rate speeds up to at least double when you have a fever...not good for us, unless he is eating twice what he normally does, he happened to only be eating half. So, we spend 4 hours in the waiting room and see the doctor. They find no signs of infection, and Landon decide to feast while in the waiting room...so they sent us home! Great!
Well, we almost make it home and the Geneticist calls my cell phone asking if we had been seen yet. I told her yes, and they released us and we were almost home. Well, apparently they never called them even though we gave them the protocol letter and their phone number. So, she sends us back to the ER for blood work and claiming he will be admitted. So, we get back go through the hell that is a blood draw on a 1 year old. His blood work all comes back normal except for 2 liver enzymes...ugh. Well, apparently they weren't worried about those, so they let us go home especially since his glucose was 78 and his bicarb levels were 27! Both great numbers.
We follow up with our Pedi on Monday, and needless to say he is pissed that the on call service wouldn't let us talk to him or the doctor on call...and that the nurse we talked to put nothiong in her report about Landon's disorder after we told her about. So, being the amazing doctor that he is he set up a meeting with all on call dr's within the service and educated everyone of them on Landon and his disorder and the protocol. He called the Geneticist and made sure that we are all on the same page as what to do when Landon gets sick at night or over the weekend. So, I feel much better...am I disappointed that it took something like this to get everyone on the same page? yes, but relieved that we finally know what to do.
So here it is:
If Landon is vomiting...call
If Landon has diarhea and is refusing food and drink...call
If Landon's glucose level goes below 65...call (I have a glucose meter, that the nurse at the Pedi's ofice was so nice to teach me how to use!)
If Landon has a fever of 102 or higher...call
If Landon has a 101 degree fever and is lethargic...call
If Landon is lethargic and refusing food or fluids...call
Now, not in every instance will he be admitted to the hospital. This protocol goes for when office hours are available too. They want to look at him and see what is going on and make a determination from there. We may just have blood work, and be released like the other night...it just depends.
I am happy to report that Landon is doing great now! Must have been a virus. He had a great time at Little Gym today, and was invited to his first birthday party!