Sunday, August 27, 2006


We sent two babies home on oxygen recently. Both were very premature, 23 or 24 weekers. Both had young single moms who visited often and did as much care as possible in the hospital. (Both also had fathers in jail.) Before we send such babies home with oxygen, we try to educate the parents and train them so they know all the care of their baby, including how to feed and give meds, and how to take care of the equipment. The equipment companies also teach them how to use the necessary equipment, which in these cases included oxygen tanks, nasal cannulas, and apnea monitors.

When we send such babies home, though, I always cross my fingers, say my prayers, knock on wood and generally just hope like crazy that something doesn't get screwed up. It shouldn't be so hard to take care of an oxygen tank, nasal cannula, and apnea monitor. The companies make them pretty easy to handle, at least it seems that way to me. But the number of times something goes wrong is irritatingly high.

One of these moms called us about two days after discharge, complaining that she was running out of oxygen. When the home care company checked things out, they found that the oxygen flow was set on 2 liters per minute instead of one-quarter liter per minute, so it was running out 8 times faster than it should. I don't know what happened there; maybe mom got 0.25 and 2 mixed up. Maybe she didn't know that 0.25 equals one-quarter.

The other mom called us to say her son's meds had run out, and would we write a new prescription for them. I asked her if she had seen her pediatrician yet, since she has to make the transition to her outpatient doctors (although I did give her new prescriptions.) She told me that she had decided to switch pediatricians, so instead of keeping the appointment we made with her pediatrician one week after discharge, she instead made an appointment with the pediatric clinic at the university hospital. That wouldn't be a problem - except that the appointment was for six weeks after discharge, and this baby needed closer monitoring than that. At least she kept her appointment with the pulmonologist, who wrote in her letter to us that mom didn't even know how to turn the apnea monitor off.

I sigh just thinking of this. We take care of these kids for 3 or 4 months in the hospital, and then just hope their parents don't screw up. And if they do screw up, we'll probably get blamed for not providing enough education. All the education in the world, though, doesn't seem to be enough for some moms.

Every now and then one of these babies dies a sudden death at home, and then I just want to pound my head against the wall. Life is a crap shoot, and some babies have better odds than others.


Blogger Dream Mom said...

I can imagine your frustration however there are a lot of factors that can account for errors. I offer the following:

At the age of twelve weeks, Dear Son was on ACTH therapy and released from Big Academic Medical Center. The home care company delivered the needles to us. Dear Son's Dad was proficient in giving the injections to Dear Son; he was to inject the ACTH into his thighs. No nurse was sent to the home. The home care company sent the wrong size needles to our home. These needles were larger than Dear Son's thighs, which were to be injected.

Fast forward to a few months ago. Dear Son was released from Big Academic Medical Center prior to Memorial Day weekend after his MRSA pneumonia. I was taught how to use the feeding bags and pump. The home care nurse was supposed to be notified of our discharge. I was assured all of the supplies, feeding pump, pole, etc. would definitely be delivered prior to us arriving home. I questioned if this was possible to be delivered, with Memorial Day traffic and all. I was assured it was fine. Dear Son's neurologist recommended discharge after Memorial Day.

The pediatric team discharged Dear Son on Saturday, Memorial Day weekend. You guessed it, all the supplies were late and weren't delivered until 7 p.m. that evening and we had been discharged at 11 a.m. Dear Son missed his noon, three o'clock and six p.m. feedings. Dear Son's Dad brought over the supplies and arrived at 8 p.m. We were shown the correct dose/volume on the pump however we couldn't get the pump to work properly. I called the home care nurse (who gave me her number in case of a problem). She was supposed to be called by the hospital when we were discharged. She was not called. I called her and she didn't come over and couldn't figure out how to get the pump working. (Yes, she was supposed to come over but probably decided it was too late.)Dear Son's Dad called Big Academic Medical Center who claimed they didn't have anyone that could help us, despite the fact that they are a pediatric level one trauma center, had just cared for Dear Son and despite the fact that we had just had a $200k hospitalization. In frustration, I called a Respite House near me, and spent one hour on the phone with the Director of Nursing trying to get the pump to work. Finally, we did a work around and managed to get Dear Son fed at 10:00 p.m. at night. We couldn't risk feeding him directly by syringe into the g tube after being vented, he was still quite fragile. The home care nurse showed up the next day. I've been taking care of Dear Son for almost 15 years and stuff still happens despite my efforts.

We also still get errors getting the wrong supplies delivered. Just last week, I got a Mic-key button delivered despite the fact the prescription said it was a "Mini" button.

Stuff happens all the time. Despite some of my best efforts, I can tell you that it's not always the mother's fault. I am sure sometimes it is but there are so many things that can go wrong, it's unbelievable.

One of the reasons I stay with Dear Son nearly 24/7 at the hospital is because of errors. At least once a day, I encounter a medication error-anything from the wrong prescription, to the wrong dose, to a nurse wanting to give the medication at the wrong time. I get a sign off on admission so that I am the only one giving seizure meds to reduce errors.

Errors are huge in healthcare. I can only imagine how difficult it would be for a new mother with a premature infant to navigate the healthcare system.

3:19 PM  
Blogger Flea said...


Hold on a minute: Has a NICU ever been sued for a bad outcome stemming from a parent not understanding d/c instructions?



4:30 PM  
Blogger stockingup99 said...

Can you say Darwinism?

Sorry that your heroic efforts sometimes go to waste.

3:30 PM  
Blogger neonataldoc said...

Dream mom, you have a legitimate point. Errors can be made by all kinds of people in the system, doctors, nurses, hospitals, home care companies, and parents. I guess I was a little frustrated by the parents when I wrote this post.

Flea, I don't know the answer to your question. But that doesn't mean I can't complain about the issue!

Stocking up, I guess that's a good way to look at it.

10:26 PM  
Blogger That Girl said...

everything that dream mom said. Plus the fact that, lawsuits aside, all parents know deep down that if your child dies, it's your fault - no matter who you sue or dont sue.
That kind of responsibility is what keeps parents up at night, terrified and tense and even more likely to screw up.
Despite having a high IQ, going to one of the top 10 high schools in the country and being accepted to Brown, I did 2 really stupid things when my little one came home. (Just having had major surgery and being ill doesnt help either).
When he came home I went to make his formula as per instructions. In the hospital, all is metric. These instructions werent in metric. So instead of 2 tsps per 3 ounces of water, Im using 2 tsps per 3 millilitres. Can you just imagine what that looks like?
I even called the hospital to complain to the nutritionist. I told her I totally followed the directions but it was way too thick! About 10 minutes after I hung up with her (she had no answer) I realized how stupid I was being.
I also rarely bathed my little one because when he was off oxygen he de-sated to 40 (from 55 normal). So I limited bathtime to once a week. It wasnt until about 6 months after he was off that it occured to me I could have given him a bath with the oxygen on.
There's a huge difference between taking care of a child on a shift that you have a temporary/intellectual (if that) emotional attachment to and being fully invested in someone's survival which can, ironically, make you less suited to give care in some ways.
As dream mom said, I have observed countless hospital & pharmacy staff errors from people who should be better at it than me. At least they get to go home at the end of the day.

10:01 AM  
Blogger Ex Utero said...

Hey NeoDoc,

read your e-mail.

3:46 PM  
Blogger overactive-imagination said...

I can't imagine how frustrating that must be. I think I would be furious since these mothers are taught all they need to know to do things correctly and safely.
Do you find it hard to bite your tongue or fight the urge to give them the damn 3rd degree before they leave.
I think alot of times that these moms are just so ready to take the babies home that they'll listen to anything and say they are ready even if they are unsure.
I would be terrified to take my baby home on O2 or an apnea machine.
That's heartbreaking.

8:07 PM  

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