July 01, 2016

Mr. Grouchy Pants

Aiden has officially been out of surgery for one week - and he's a grouch! (Don't let that picture fool you *wink, wink*) He's been very quick-tempered; the moment someone touches him he tenses up and gives you a real crusty look. If you dare to do so much as clean out his mouth or change a diaper, he'll chew you out real good. And really, I don't blame him.

A lot of his grouchiness is due to having withdrawals from narcotic medicines. I find it so frustrating that these babies are made into little drug addicts in the NICU. Since their first days of life, they are often pumped full of every narcotic drug imaginable. Believe me, sometimes it's merited. I don't want Aiden awake while he's getting a PICC line. After surgery I want him on every medicine possible until he's comfortable. And he's had more then a few times where he's felt so air hungry from being upset, that the only way to get his body out of that panic attack is to knock him out.

But there has been so many other times that when he's the slightest bit fussy, and rather than checking to see if something could be wrong first, they simply go grab a PRN narcotic. These medical professionals can be so quick to medicate, medicate, medicate. I can't tell you how many times when I'm there and told them "no" to the extra narcotics, and to check to see if it's a burp, or wet diaper, or to change his position first; and 9 times out of 10, that's all that was wrong and he calmed right down.

It kind of bothers me. If these babies were at home, and they were fussy, would you automatically reach into the medicine cabinet? No. You would soothe them, burp them, swaddle them, bathe them, change them. There is a whole mental checklist of things that could be wrong.

Another problem is that a baby is constantly monitored in the NICU. If a child is upset and crying at home, I guarantee you that infant's heart rate is high, that their co2 levels are high, that they are desating and have low oxygen. And do you call the doctor in a panic when they are upset and purple crying? Well, maybe. BUT your pediatrician wouldn't write you a prescription for pentobar to knock your baby out while he or she is purple crying. You would soothe them, do bicycle legs for gassiness, burp them, try white noise...

You wouldn't automatically drug any child at home the moment they get a little fussy. So why do hospitals use this as an easy-out to a baby that is upset?

And the best part is, although these hospitals are the creators of these addicted babies, they will use it against you and tell you that because your child requires so many drugs, they are highly critical and don't have much quality of life.

And again, when he's in a complete panic because he feels air hungry, then I agree the best thing is to give him something to help his little body calm down. It's very similar to having an asthma attack, but the difference is that his body doesn't understand what's going on and you can't communicate ways to help him come out of it. So his body continues to panic, thinking it's not getting enough oxygen, and he spirals until he's physically exhausted and quite literally passes out. In these instances, narcotics and opiates can get him out of these spells before he's exhausted. But there are just as many instances when he's not air hungry, but he's pumped full of extra drugs. And all of these extra drugs really start to pile up.

So Aiden has become highly tolerant of any narcotic drug or sedatives. So much so, that immediately after his surgery in an attempt to keep him comfortable, he was given Ativan, Clonodine, Morphine, Methadone, and Tylenol around the clock. The first three days he was also getting Pentobar and Precedex on top of those others. That's every drug safe to give an infant, at the highest possible dose you can give him, every 3-4 hours a day. With extra PRN doses as needed.

Obviously this is a terrifying amount of drugs. And it's no wonder he's going through major withdrawal problems.

He's cranky, clammy, and shaky. He has major diarrhea and tummy cramps. But really my rant on medicine aside, he's doing well. Immediately after surgery, and even through his withdrawal issues, his oxygen needs and PIPs have been significantly lower. Even his current neonatologist exclaimed excitement over his ventilation needs- and that doesn't happen often! The trach seems to have opened him up and allow him to breath more easily. I can't wait until we get his medicine under control so we can start interacting with him like a normal baby.

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