But we sure are sleepless.

For probably the last two years, Charlie has struggled with sleep. We have a rough patch, make adjustments, and then another rough patch crops up. It can take up to two hours for him to fall asleep and once he does, there’s a good chance he’ll be up anywhere between three and five AM. We have tried probably everything under the sun. No lights. Lights on. Early bedtimes. No bedtimes. Noise makers. No noise. Fan on. Fan off.Different rooms, different temperatures, different clothes.

We’ve tried a lot of different things and it seems like lately there are far more bad patches than good. When we finally got the point where he was sleeping a few hours each night and then two hours at school, we knew it was time to bring it up with the doctor. At our most recently neurology visit we discussed potential issues:

1. His cerebral palsy is causes low tone in the throat, and that, in turn is causing sleep apnea.

2. He’s having some kind of seizures either at night or while he’s sleeping.

3. His brain injury has made his body unable to properly regulate sleep.

None of these things can be diagnosed by looking at a child, so this past week we spent a good couple of hours meeting with a pediatric sleep specialist. She seems to be leaning towards possible apnea. Our neurologist is leaning towards regulation issues. Either way, Charlie’s on the schedule for a sleep study next week.

Yep. My preschooler covered in electrodes and trying to sleep. That promises to be veeeery interesting.

Either way, we’ll hopefully get some answers.

What, Mom? You know I don't sleep.

I’m rarely political on this blog. It’s not that I don’t ever have a political thought, but this blog is about connecting with others, and not about making them mad, so I mostly keep my mouth shut. That will change today, however, because some things are so terrible they need to be addressed–even if it makes some people unhappy. At the end of the day this is a blog about raising kids, and they are the most important thing.

Recently, a conservative  radio talk show host advised her listeners to not let their children be treated by medical workers who are gay.

She was careful to say that, of course, this would be in non-emergency situations, and that it was especially important when your child is in the hospital where they might be vulnerable to the morals of others.

And all I can think is: Lady, please.

There is a ton of stuff that I don’t know. I don’t know squat about plants, bird, hunting, fishing, car engines, or computer games. There are things that I know, though, and one of those is kids in the hospital. I’ll give you my pedigree: three kids with extended hospital stays totaling approximately four months. We’ve had MRIs, CTs, IUGRs, swallow studies, Ultrasounds from stem to stern, EKGs, EEGs, ECMO, upper GIs, and two rounds of electric shock. We’ve had brain surgery, major cardiovascular procedures, feeding tube placement, and a couple extended stays for observation. We’ve stayed in PICUs, ICUs, and CVICUs. We been treated by neurologists, neurosurgeons, neonatologists, intensivists, hospitalists, physiatrists, nephrologists, pediatricians, and cardiologists.

It’s safe to say I am well-versed at having a kid in the hospital, so I’m going to voice my opinion on this one: when your kid is sick, you want the best possible person for the job. Really. Don’t try to pick and choose–let them give you who they think is the best person for the job, not someone whose non-professional life is more pleasing to you.

Don’t be fooled into thinking that in a non-emergency situation, it’s acceptable to get less than stellar care. It isn’t. Think about it, do you want the nurse who takes four tries to find a vein or do you want the one who gets it on the first try? Do you want the ultrasound tech who calls for backup when she’s not sure, or the one whose too green to know what she doesn’t know?

The quality of  care does matter–in every circumstance. My husband and I once took Charlie to the emergency room for uncontrolled screaming. We had no idea what was wrong, but we wanted to have his shunt looked at. A CT revealed no issues, so the two emergency room doctors just sat there scratching their heads. They peered in his mouth, ears, and nose. They took his temperature. They had no frickin clue what was wrong with my kid, so they admitted him for observation.

As soon as I met the hospitalist (doctor who works only in the hospital), I knew she was good. She had a hypothesis, but also ran through a list of other possibilities. She had her bases covered. Guess what? She didn’t need to. She waited, observed Charlie, and noticed he was putting his hand to his throat. A quick examination reveal foot and mouth disease. Two other doctors had missed this. Let me repeat myself: you want the best medical care you can get.

As a final thought, I’ll offer you this: you have a right to get sub-standard medical care if that’s what you want. I agree. The problem is that your decisions affect everyone in the hospital. When Charlie was his sickest, we had the best nurses–nurses who had been there forever, had good bedside manner, and generally you could sleep at night knowing your child was in good hands. As he got better, we got less-experienced nurses. Not bad nurses, but younger and maybe a little less apt at making you feel OK. So maybe you’ve decided that you’re OK with less than the best if that means that your child is treated by people who are morally the same as you. Fine. But when you disrupt the system, you could be leaving a high-risk patient with a less-than-perfect nurse. And that? Is not OK.

So there it is. My two cents on the matter. Like I said, I don’t know everything, but I do know kids in hospitals. Also, I know someone crazy-talking on the radio to get attention. I just hope no one takes that lady too seriously.