I feel like we live with our own sort of color coded warning system, like the one Homeland Security used for the terrorism threat to the United States, when Max is sick.
LOW - He's mildly sick. This one will get us watching him more closely. Checking temperature, maybe a little medicine at home, and probably some extra sleep and snuggles will be needed.
GUARDED - Time to call the nurse. We get the feeling that he'll need some medicine or another set of eyes to check on him. Because he's part of a special clinic for special needs kids, the nurses are wonderful with triage and sometimes we're able to just sort it out on the phone. More often than not, this ends with us taking him to see his pediatrician.
ELEVATED - Skip the triage, dial doctors instead. We call his metabolic doctors, neurologist, and pediatrician to let them know we're taking him straight to through to Emergency, rather than taking a space in clinic. We know at this point he has to be seen, and the great thing about all of his doctors being at the hospital is that they will all know when he goes in through Emergency and all get on the case pretty quickly. When we go from home to ELEVATED, we come with all of his medicine and a packed bag, knowing it is going to be a long day/night.
HIGH - This is the point where he gets admitted. Most of the time it's straight from Emergency, sometimes through Urgent Care, or once by a ride in an ambulance. We have our favorite floor, and favorite nurses, so we will often request them before we even get up to a floor. We know he'll need to be watched for a day or so. Good thing we have that packed bag!
SEVERE - This is sick. Sick-sick. PICU-sick. "I don't know what could be wrong with him", says the doctor, sick. We usually are sent to the Intensive Care Unit for Code Red, SEVERE. Sometimes we're on the floor still, but he's watched very closely. When he's this sick, it takes months to get over it fully. He was this sick last December, and again this past summer. He was that sick for one day this past illness, which put him in the PICU, and he stayed in there, but was downgraded to HIGH.
We go through this mental list all the time when Max is sick. In order to get home from the hospital, the order goes backwards. I told Max's teacher today that Max issn't hospital sick, but he's still not feeling great. It's still astonishing every time how a 24 hour bug can last nearly 2 weeks in him.
Today he slept until about noon, and then woke up a mad, upset, grumpy, frustrated little terror. We watch him closely, and troubleshoot what might be wrong. I got him to use his Dynavox for a few minutes to try to tell me what was making him scream so much today, and he told me he's FRUSTRATED!!!, he feels silly, and his bottom hurts. He has been full of gas bubbles, so I think it might be that. In the end, I think he's just feeling crummy. No fever, keeping his food down, nothing hurting from our own exams of pushing and poking on his body. No need to take him in. Just sit, try to comfort, and hope that the threat level doesn't rise.
max I sure hope you are feeling better.
It was good to hear your levels and what you do when. I guess I do this some too, only my calls are not near as intense (like call mom who was a nurse is on my list, not PICU). My heart goes out to you and to Max. Health and healing to you. Thanks for sharing your journey. It's good to know what is reality to someone else and to be thankful to not have to go through all of that and also to learn to be sensitive to those who cope with this daily/yearly. Strength to you and your group of super mommas ;)
I know this list well. It's like a constant companion (and an unwanted one, at that!) that follows you everywhere and you don't even realize that it's not "normal" because it's the only "normal" YOU'VE ever known. I hate this list as much as I'm thankful to have it so I at least have a sense of direction over things completely out of my control.
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