SMA 
Synagis
RSV
SMA = Spinal Muscular Atrophy (which leads to respiratory vulnerability)
RSV is a cold-like virus
Synagis is a drug used to help protect kids with respiratory vulnerability against RSV
In sum, the overarching goal here is to keep our 1.5 year old daughter, who has medical needs, from catching a cold. It is a Big Deal.
I’ve read, many times, how much you reply on the SMA community to fill in the gaps for Getty Owls care. I don’t think I’ve truly appreciated what you meant until now- that you weren’t given a infection control protocol from her docs, but had to benefit from the direct experience of other SMA families and the like.
You guys, and your community, sound amazing.
Also, think about things that get used often but aren’t frequently cleaned. For instance, a British Medical Journal article several years ago mentioned neckties and similar accessories worn by doctors as being havens for spreading germs between patients. So if you sneeze into a cupped hand, you might want to not just wash your hands, but also swab the watchband that you sprayed on. Otherwise you might check your watch a couple minutes later and if you adjust the fit, you might contaminate your hand. However, wearing a glove at the time might have shielded the watch, depending on how long it was.
If you’re going to use gloves, you need to think about them as disposable objects, like tissues.
Thank you. They are amazing. That’s exactly right. Our docs don’t tell us shit. Other than routine vaccinations, our docs don’t know shit about what we need. They tell us nothing. Because they don’t know what the needs are for SMA, they are not proactive at all. Their stance is to wait for something to go wrong and then fix just that one problem.
By contrast, there are SMA parents who have been at this for 5 to 10 years or more. They know what to expect. They have been fighting the battles for a long time. They are the ones who anticipate our needs and advise us accordingly. They are the ones who tell us X will be an issue and Y will be an issue. They tell us how we will likely need to address those problems, what works, and what doesn’t work. They teach us that we will need a certain piece of equipment and a certain set of supplies. They teach us how to use those things more than our docs ever teach us.
We approach our docs with our current or anticipated needs and tell them we require X, Y, and Z to address that need. The ball has always started in our court to know what will happen and how to address it. I can’t recall any occasion where our docs have told us to anticipate any specific problem associated with SMA.
Then, when we approach our docs with the problem and our desired solution, sometimes they say yes, sometimes they say no, and sometimes they want to look into it but then fail to act.
In those negative cases, we have to go to battle and fight for Getty. We go to the SMA community to get good explanations of the medical theories involved and gather anecdotal evidence of successes. We do our own medical research and gather articles from medical journals and get written protocols of other doctors. We contact other doctors who have been successful in doing the thing we desire. We then go back to Getty’s docs and pound them with our literature, evidence, and contact information for other docs. We try to convince the docs of other SMA patients to call talk to Getty’s docs.
We fight and fight and fight. Then, Getty’s docs come around and finally do whatever it is we wanted done in the first place.
This is the pattern. We go through this over and over again. The battles drag on for months with phone calls, emails, online research, and posting on SMA community message boards in an effort to break down all the arguments and unravel all the reasons given by Getty’s docs about why they are not inclined to do something. It’s time consuming and exhausting. When one battle ends, the next one begins.
Her pediatric pulmonologist is great because, over time, he has learned that when it comes to SMA, we know our shit. When we ask for something from him, he’ll usually order it without much question. For example, we told him we need an emergency supply of oxygen (when he was the one who should have been educating us). Upon request, he said he is normally reluctant to order home oxygen because he is afraid people won’t administer it properly. Then he paused and said, “… but for you, ok. I know you’ll do it right.” We had an oxygen tank at our home later that day, and it now sits in the corner.
Just about everything we know about managing SMA comes from the SMA community or we learned it on our own. It is Getty’s docs, not the SMA community, who “fill in the gaps.”
Sadly, this pattern is all too common in the SMA community, and we help other SMA families educate and fight their doctors and insurance carriers. It is not uncommon to get please for help from SMA parents whose docs are telling them things that are horribly wrong for and would kill an SMA child. It’s sad.
So, yes, we have to come up with our own sickness protocols. 
This.
I seem to recall a study on mastitis in cows that found increased spread of infection when the milkers wore disposable gloves. Without gloves, they were constantly washing their hands because they were aware of getting dirty. With gloves, they felt clean, and simply didn’t change gloves as often as they would have washed their hands.
One of my pet hates is staff at butcher’s shops, bakeries, etc. who have clearly been given food safety training and wear gloves to handle the food, but keep the gloves on for multiple transactions. They’re also handling everything else in the shop with the same gloves. (Including money, which is evil and crawling with germs, as my mother always told me.)
I would take a look at hospital protocols, especially in hospitals that have instituted and follow checklists.
The Checklist Manifesto by Atul Gawande is an utterly fascinating and mind-blowing compilation of just how much human error can be controlled when a situation is analyzed and appropriate checklists are made. One of the subjects he had to deal with was controlling nosocomial infections in ICU, and the worst culprits were other doctors.
My mom (an RN and nursing educator with over 20 years experience) and I often talk about these kinds of problems. One of her favorite ways to teach her students how important washing hands is was to start a clinical day by spritzing everyone’s hands with a liquid that fluoresced under UV light, telling them it was an experiment, but not what the experiment was. At the end of the day, she took out the UV light and showed them not just how much was left on their hands (because they hadn’t washed thoroughly), but how much was on their faces, their hair, their clothes, their crotches . . . and then she walked them back through all the hospital departments they’d been in, and she showed them where they had been touching doorknobs, light switches, clipboards, blood pressure cuffs, stethoscopes, patients’ hands, arms, chests, necks, and faces.
And then she took them to the neonatal ward and showed them all the glow-in-the-dark splotches on the newborn babies.
And then she asked them “How many of you used the restroom today? Ate food a patient might be sensitive to? Touched a patient with a contagious illness?” She said she had students break down and cry, and one nearly fainted once.
As to more concrete suggestions, especially gloves:
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limit glove use to only the times when you are handling your daughter, and be sure to wear a face mask at that time. Sanitize hands and face just inside the room, put on protective gear, and when you’re done, strip the gear and throw it away before you leave. This way, there’s no cross contamination with the door. Never ever reuse gloves or masks. Learn how to remove gloves without contaminating yourself.
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If you are sick, remove yourself as much as humanly possible from care for your daughter. Don’t prepare her food. Don’t change her diapers. Don’t wash her clothes. Don’t stock her supplies. If you must do these things, sterilize hands and face, put on gloves and mask, do the task, and then strip the protective gear.
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Wash your hands. Wash them again. Wash them every time you think about it. Buy some hand lotion, because your hands are going to get very dry. And go wash your hands.
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If you are sick, take whatever OTC meds you can to eliminate symptoms that will pass on illness. Take a decongestant/antihistamine to reduce sneezing and mucus production. Take a cough suppressant if you’re coughing.
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Focus on disinfecting the environment, and do it frequently. Bleach is your bestest friend EVER. The general rule is to mix 3/4 cup household bleach (3% sodium hypochlorite) per gallon of water. Wipe down every hard surface you can touch, and let it air dry. I’d say, from a conservative standpoint, plan to do it in the kitchen, the bathrooms, and the baby’s room first thing in the morning (before food preparation, before changing poopy diapers, before showering even), before each meal (kitchen), after each time the bathroom is used (bathroom), and just before you go to bed (everything). It’s a pain, but mix the bleach and water each time. The chlorine in the bleach will evaporate from the water after a couple of hours, rendering it worthless. I know they make wipes with bleach, but . . . I’d trust the old fashioned way more, myself.
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In the kitchen, every dish used is immediately put in the dishwasher, and the dishwasher is run on sterilization cycle at least once a day. Sterilize your hands and face and put on protective gear before putting the dishes away. (Okay, I realize I’m contradicting my first point here and in the next one, but YMMV and all that.)
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If you are preparing food for your daughter, sterilize hands and face, put on protective gear, take out everything you need, prepare the food, then strip gear, sterilize again, and put new on before taking it to her.
The more you do to prevent germs from landing near your daughter or killing them when they do arrive, the safer you will keep her.
And, of course, the sooner you get over a cold, the less risk there is of you giving it to your daughter. So, take your vitamins, get lots of sunlight (manufactures Vitamin D), eat your chicken soup, and consider getting a neti pot and using it. There isn’t much documentation on whether saline nasal irrigation does anything other than alleviate symptoms, but since rhino, adeno, and coronaviruses all like to congregate in the upper respiratory passages, washing them out can’t be a bad thing.
I kind of went overboard, but I hope it helps. And read the book if you can. Even aside from his medical knowledge and analytical prowess, Gawande is a fabulous storyteller, and the subject is fascinating.
Not overboard at all. Thanks!
phouka nailed it. Seriously.
If you want to find more information, try looking up care of immunocompromised patients. It’s not what you’re dealing with, obviously, but there are some parallels and you should be able to find some written guidelines from different hospitals to see how they handle vulnerable patients.
More important than just plain keeping your hands washed, which is still a good thing, is washing your hands immediately before dealing with Miss Getty. If you think you’re getting sick, a mask is also a great idea, because respiratory droplets are a concern, especially for colds, RSV, etc.
Install a sanitizer dispenser right outside her room, and elsewhere in the house if you don’t mind the damage to your decor, to make it easy to remember to sanitize often. Handwashing is good too, but a sanitizer should take care of the vast majority of stuff you’ll have on your hands. IF you sneeze into your hands, obviously, wash 'em with soap.
Good luck getting through flu and RSV season. I’m rooting for you.