Saturday, March 04, 2006

My son needs me more right now than he ever will. Unfortunately, the thing he needs most from me right now is nothing.

He's still laboring to breathe without the ventilator, and getting upset just makes it worse, makes it harder for him to breathe - so they still have him on minimal stimulation and have begun again with morphine whenever he seems to be getting agitated. He needs rest and time right now, our presence is a stimulus he just doesn't have the ability to handle right now, so we came home after just two 15 minute visits. It's so hard being there and seeing him, watching him work so hard and not being able to help him in any way, or hold hid little hand or whisper in his ear. We just stand and stare at him. We know it's what's best for him, but it's just so hard to do.

Basically our visits were just a chance to talk to his nurse, which I can do on the phone from home, and since the phone isn't right next to his bed, it's less chance of bothering him.

He's still doing well physically, aside from needing the opportunity to adjust to breathing on his own. It bothers me that it's taking so long, but they say it isn't abnormal for it to take this long. It seems abnormal to me.

He's become very sensitive to touch and they try not to mess with him at all if they can help it, but the nurse said that there were things we used to do (like rub his little head) that he hates now. They just upset him. The sensitivity is worrisome, but, get this, "may just be withdrawal." He's been on so much narcotic medication that he's addicted and is going through withdrawal symptoms from being weaned back so far. They have a patch on his arm to help with the symptoms. The eye rolling thing may also be withdrawal according to his nurse.

My three month old son is going through withdrawal from narcotics. I've heard stories about withdrawal - it's excruciating for adults. I can't imagine what it must be like for him. And I know that giving him more morphine is only drawing it out, but he needs the morphine to relax him to improve his breathing.

____________Mid-post phone call from the night nurse: ________________

Well, they just called and he's back on the ventilator, and call me crazy, but I'm relieved.

If he can't breathe without morphine, oxygen and zero stimulation, then he isn't ready. She says he's calm, working much less, and more relaxed. She'll have to give him much less morphine to keep him calm and oxygenated, and he can rest. He was working so hard just to breathe that I was worried that he wouldn't be able to heal.

When she called she was afraid I'd be upset. She didn't want to tell me, because they consider it a failure on their part when a child has to be re-intubated. As far as I'm concerned, doing whatever he needs is their job, and if he NEEDS to be intubated, then intubating him is NOT a failure. To me it's more of a failure to make him do something he isn't ready to do, and jeopardize his overall recovery.

Apparently in their attempt to keep him calm today, the nurse hadn't been doing his respiratory therapy as much and he was even worse after we left than he had been before, because his lungs became congested and made it harder to breathe. Now they'll be able to do the PTs and suction that shit out without it upsetting him so much.

I feel better about him right now, 5 minutes after the call, than I have in 2 days. Being the mom in this situation is so fucking hard because they know what they're doing, and I'm just the Mom, with no prior experience with this stuff. I don't know what "normal" is. I know this process is tough, and that he's going to have to work - I just don't know how much, or when it's too much that they're asking of him.

I appreciate all the work all of them did to try to keep him off the vent and give him the chance to do it on his own. I am also very appreciative that someone finally said enough is enough and gave him a break.

posted by Erin @ 9:33 PM   5 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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