The following piece was written during our cocooning (Isolation) days. We did most and more from April 2011 to July 2011 (Pre-BMT period) because it is important that your child gets to their BMT with the least amount of infections. July 2011 to April 2012 (Post-BMT) as the immune system needs time to rebuild and flu and cold season is dangerous. We are now 450 days post BMT and we still do some of the things mentioned below, like: no shoes in the house, wash hands regularly, sanitize kitchen, etc... . We hope this helps some of you. Don't feel overwhelmed, it becomes second nature.
If you have OCD welcome to Paradise!
We have received several requests from fellow HLH and FLH parents, especially parents who have just been informed of their child's HLH/FLH diagnosis or who are about to exit the hospital to enter the critical period post BMT, on what we do to protect our little Miabelle. Although we are no experts and in no way is what we do a guideline for anybody, we thought that we could share some of the things we do to help protect against potential bacterial infections. Many of the recommendations come from the BMT Guide of NY Presbyterian Children’s' Hospital in NY, compliance manuals from medical centers in NJ, some data from the webpage of Purell and other searches on Google. However some things just make us feel like we can make a difference in her battle for life and thus make us feel comfortable. Hopefully this will help some of us, BMT parents.
If you have OCD welcome to Paradise!
We have received several requests from fellow HLH and FLH parents, especially parents who have just been informed of their child's HLH/FLH diagnosis or who are about to exit the hospital to enter the critical period post BMT, on what we do to protect our little Miabelle. Although we are no experts and in no way is what we do a guideline for anybody, we thought that we could share some of the things we do to help protect against potential bacterial infections. Many of the recommendations come from the BMT Guide of NY Presbyterian Children’s' Hospital in NY, compliance manuals from medical centers in NJ, some data from the webpage of Purell and other searches on Google. However some things just make us feel like we can make a difference in her battle for life and thus make us feel comfortable. Hopefully this will help some of us, BMT parents.
I will specify that what we recommend is purely for people with immune compromised children, like BMT patients, and not for the regular average healthy person. In addition, we recommend that you speak to your physician before you implement any type of sanitary environment and not rely on our experience as the instruction manual: we are no doctors nor Germs Gurus, just to paranoid parents seeking to protect. Again we are no experts and do what we think can help our situation based on our readings. Before doing anything, you should consult your medical team and ask for guidance, plus do your own reading and research. Doing your own research and getting advice from your medical team will make you better understand the Whys and Hows of creating a sanitized environment as well as to what extend your child needs it (as each situation is unique to the child). Finally, not every family can implement a strict isolation because of their work; this does not mean that it is a lost cause. On the contrary there are many recommendations for people who are not in isolation. Every little thing helps and most recommendations in books and manuals are designed for those situations: how to live a regular life while being conscience (not paranoid) of germs. So read up in books (see bottom of this blog) and online; do what makes you feel like as if you are making a difference. It will help most BMT parents mentally, more than you can imagine.
We are extreme according to some but when your child is on death row nothing is extreme in our opinion as long as you feel good about what you decide to do and you as a the parent feel that you are making a difference in the War on Germs. Some people will judge, but don't let that discourage you in any way because it is not for them to judge.
What are germs?
Germs are composed of harmful and non-harmful micro-organisms (invisible to the eye) and can be categorized in four groups: bacteria, Virus, Fungi and protozoa.
1) Bacteria are micro-organisms that get their nutrients from their surrounding environment. We as humans carry bacteria on our skin and clothing; many even live inside of us on a day to day basis. Bacteria do not mean by definition that they are harmful, some are and some are not. Bacteria live in water, organic material, earth, plants and animals (pets). Bacteria can live and multiply given that they can feed off of their environment. If you eliminate the environment by removing it or by killing it, the bacteria will die. This is why pets and plants are to be avoided for the child. In addition letting your child immediately post BMT play in dirt is not recommended either.
2) Protozoa are like fungi a plant-like organism that love moist environments and cause mainly intestinal infections. These organisms can remain dormant without nutrients for extended periods of time making them that more difficult to avoid.
3) Virus is "an infectious agent that can replicate only inside the living cells of organisms" (Source: Wikipedia) and can only survive for short periods of time outside living cells. For example the average cold virus can live 2-to-3 hours once it has left a carriers body. Most commonly known viruses are: cold, Flu, small pox and HIV. Viruses spread easily but to each their own method of transfer: direct contact, indirect contact or even small water droplets propelled in the air as the result of talking, sneezing or coughing. The danger to a BMT patient is that antibiotics are highly inefficient in battling a virus as a result depending on the severity of the infection it can kill its BMT host. However doctors have other means of protection that can help and often avoid a worst case scenario. Report immediately any sign of fever, coughing or sneezing. The faster you report it, the better the chances are to battle it. Do not fear them but know what you can do to minimize exposure of your child and don't panic if your child has a fever, just call your medical team. It is important to ask your medical team before discharge when you should do what and what you should look for.
4) Fungi are plant-like organisms that thrive in warm and humid environments and get nutrients from plants, foods and animals. Most BMT patients will get a medication to fight fungi. Mold from water is not considered a fungus but bacteria, however avoid it at all cost. Make certain your bathroom is cleaned with disinfecting chemical products weekly as Fungi and mold love bathrooms.
If you would like more information about each group I recommend Wikipedia, although the part on Fungi truly went above my head. After reading it I went cockeyed. Some of the most common things to watch for are kitchen and bathroom grown germs, mold, viruses like influenza (flu) and the dangerous viruses like small/chicken pox, measles and others well-known viruses.
Like I have said before in the blog, there are three major sources of risk (listed from most to less important): (1) the ill child to themselves, (2) siblings and the caregiver and (3) the external environment (from other humans to fertilizer in soil).
First of all, an immune compromised child is a risk to themselves. Our body, in- and outside, carries naturally germs of which some are harmless and some are harmful. When the immune system is under attack or non-existent these bacteria can (not necessarily will) move within the body from being contained, for example in the stomach, into the blood stream and find a new area to grow and eventually become harmful. In some instances they don't even have to roam around but can cause damage ones the natural soldiers (our immune cells) are too weak to contain them. This is how Miabelle's doctors believe pseudonomas found its way from Miabelle's stomach into her blood. There are many examples but please ask your doctor. There is little you can do, however doctors are prepared for such infections and a BMT child usually receives medication or infusions of anti-bodies to avoid such events. Again, your doctor knows best.
Secondly, siblings and caregivers represent a risk as we can be carriers of germs whether we know it or not, whether viral or bacterial. In our case, Noelie (Miabelle's twin sister) lived with her grandparents for the most critical period post transplant, which is the first 100 days. Noelie did not have all her immunizations at the time and as a toddler putting everything in her mouth was a danger to her sister, who puts also everything in her mouth (remember indirect transfer: see blog named "Contagion"). We do not recommend separating siblings but it is key that the siblings are carefully monitored for potential infections and that you inform them of the dangers or if too small you treat them in such a way that the healthy sibling does not get infected. 100 Days post transplant our girls were reunited but Noelie just like Miabelle had to follow strict home rules.
We as caregivers are a risk because we are exposed to an external environment which we do not control. I read in a research report on the flu that you can be a carrier of flu and transmit within 5 days of the initial infection, yet before showing any symptoms. Also, remember that the average cold virus can live 2-3 hours outside a carrier’s body, on clothing or a surface for example. These are two examples why we as caregivers are a risk to the BMT patient. We are at risk of bringing germs inside a sanitized environment and transmit them without our knowledge to our child. All you need is an elevator button (which many people touch) or a door knob for us to become a potentially infected or just non-infected (clothing) carrier of the germ. We handled this risk by avoided touching our eyes, ears and mouth when outside the cocoon, wash or sanitize our hands many...many times, and change clothing when entering the apartment (we had a demarcation where the sanitized zone started, anything passing that zone had to be sanitized and we had to change our clothing before crossing this line.
Finally the external environment is an obvious risk. The flu can life on a random surface for up to 2-3 hours or can be transmitted by simple water droplets propelled in the air; or that 34% of men and 22% of women do not wash their hands after a toilet run; or that airplanes get rarely cleaned putting them at the top of the list of bacterial hubs; or that door knobs in public areas and even many hospitals are irregularly cleaned by a cleaning team; needless to say be cautious when venturing in the wild-wild world of our external environment because unknowingly we can carry these germs to our BMT child.
First of all, an immune compromised child is a risk to themselves. Our body, in- and outside, carries naturally germs of which some are harmless and some are harmful. When the immune system is under attack or non-existent these bacteria can (not necessarily will) move within the body from being contained, for example in the stomach, into the blood stream and find a new area to grow and eventually become harmful. In some instances they don't even have to roam around but can cause damage ones the natural soldiers (our immune cells) are too weak to contain them. This is how Miabelle's doctors believe pseudonomas found its way from Miabelle's stomach into her blood. There are many examples but please ask your doctor. There is little you can do, however doctors are prepared for such infections and a BMT child usually receives medication or infusions of anti-bodies to avoid such events. Again, your doctor knows best.
Secondly, siblings and caregivers represent a risk as we can be carriers of germs whether we know it or not, whether viral or bacterial. In our case, Noelie (Miabelle's twin sister) lived with her grandparents for the most critical period post transplant, which is the first 100 days. Noelie did not have all her immunizations at the time and as a toddler putting everything in her mouth was a danger to her sister, who puts also everything in her mouth (remember indirect transfer: see blog named "Contagion"). We do not recommend separating siblings but it is key that the siblings are carefully monitored for potential infections and that you inform them of the dangers or if too small you treat them in such a way that the healthy sibling does not get infected. 100 Days post transplant our girls were reunited but Noelie just like Miabelle had to follow strict home rules.
We as caregivers are a risk because we are exposed to an external environment which we do not control. I read in a research report on the flu that you can be a carrier of flu and transmit within 5 days of the initial infection, yet before showing any symptoms. Also, remember that the average cold virus can live 2-3 hours outside a carrier’s body, on clothing or a surface for example. These are two examples why we as caregivers are a risk to the BMT patient. We are at risk of bringing germs inside a sanitized environment and transmit them without our knowledge to our child. All you need is an elevator button (which many people touch) or a door knob for us to become a potentially infected or just non-infected (clothing) carrier of the germ. We handled this risk by avoided touching our eyes, ears and mouth when outside the cocoon, wash or sanitize our hands many...many times, and change clothing when entering the apartment (we had a demarcation where the sanitized zone started, anything passing that zone had to be sanitized and we had to change our clothing before crossing this line.
Finally the external environment is an obvious risk. The flu can life on a random surface for up to 2-3 hours or can be transmitted by simple water droplets propelled in the air; or that 34% of men and 22% of women do not wash their hands after a toilet run; or that airplanes get rarely cleaned putting them at the top of the list of bacterial hubs; or that door knobs in public areas and even many hospitals are irregularly cleaned by a cleaning team; needless to say be cautious when venturing in the wild-wild world of our external environment because unknowingly we can carry these germs to our BMT child.
So what do we do to contain and manage these risks? Below is a non-exclusive, nor complete, list of things you can do that may help. This is not even close of a complete list nor is it in any way a guarantee to save your child, follow what you feel will help to keep your sanity but remember live to protect so you have no regrets.
Glossary:
-Patient: your BMT child
-Sanitized environment: The environment you have created as a protective space for your child where objects are cleaned and sanitized regularly (we used to do it twice a week as recommended by NY Pres. Children’s' Hospital but we do it now 100 days post transplant 1 time a week (note we still do it 1 per week 400 days post transplant = call us crazy)). Avoid plants and pets immediately post transplant. Cats and dogs carry bacteria in their saliva whereas potting soil for plants is a major bacterial hub. No shoes in the house as they carry as many bacteria as a cellphone or toilet.
-Caregiver: any person who regularly cares for the child or lives in the same space as the child. We lived and still live with strict house rules.
-Visitors: people who occasionally come by ( we have none and no offense to anybody but don't want any visitors for as long as needed and for as long as our mental state can live with it) (400 days post transplant: we request that visitors have their flu shots, children are fully immunized and if anybody shows symptoms of an infection they get the boot in the rear end "hasta la vista" till your healthy)
Our setup was easy because we live in an apartment with one entry door. In order to distinguish Miabelle's sanitized environment from the other non-sanitize environment we used blue tape on the ground just past the main entry to mark the frontier of germs. Anything coming into the apartment does not pass the blue line without being sanitized: groceries from yogurt packaging to bananas (everything!), visitors like homecare and therapists sanitized their hands and equipment (laptop) and wear a mask/gloves/shoe covers/clothing cover (remember you are not their only patient family of the day) (we do not allow other visitors especially during flu season; not even family), we (the caregivers) change clothing before we cross the blue line (indoors versus outdoors clothing), no shoes past the blue line and sanitize our hands/phones/wallets. We were lucky that the girls' Oom (uncle in Dutch) provided us with magnetic mats. These mats are positioned at the door and people take off their shoes entering the apartment or put on shoe-covers before getting of this mat. The magic of this mat is that like inverted post-it notes the dirt sticks to the mat. Although the dirt sticks, we still require people to remove their shoes or put shoe covers on before they get off the mat (Detail: when you take off your shoes you do not put your foot back on the mat; you step off the mat). Once you see the color of these mats after a few days you realize very fast the crap you bring in on the bottom of your shoes. Also, before the blue line we have a small plastic storage bin where we keep supplies for immediate use, wipes, hand sanitizer, gloves and masks. The entry way gets cleaned just like the kitchen daily, make that papa's job ( loving it ;) )
In general we clean the apartment weekly, except the kitchen and entry way nightly. Some of the activities you do as you go while others require much effort and are done weekly. The general rules are:
-no dust, bacteria can travel by use of dust in the air
-clean especially those things you touch frequently: door knob, toilet, faucets, light switches, fridge handle, kitchen cabinet handles, remote control, chairs, dining tables, etc... .
-after you clean wash your hands before touching anything...even your BMT child.
-after you clean wash your hands before touching anything...even your BMT child.
-clean clothing and proper hygienic care of one self is essential.
But here are some of the things we do:
*Person:
-First and foremost, WASH YOUR HANDS REGULARLY!!!!!! Hand sanitizer can help when you are on the run but hand sanitizer is not as good as a simple hand wash of minimum 10-15 seconds.
Check these images on proper hand washing:
Important details of hand washing:
-use paper towels not a regular towel
-after hand wash close faucet with a paper towel, remember you turned on the faucet with the dirty hands.
-dry your hands with paper towel
-we use Lysol automatic anti-bacterial soap dispenser: it's cheap, you never touch a soap dispenser handle and it is anti-bacterial soap which helps.
-clean your phone every time you come back to the sanitized environment. Based on a study by Purell, phones carry considerably more bacteria than toilet bowls because we use it everywhere and rarely clean it. Clean it with non-moist bacterial wipes, if not you will go through a new phone every week because the moisture of the wipe will kill your phone's mechanism (trust me experienced we are).
-hand bags are also major bags of germs. Try to minimize using a hand bag and if you use one, make it a washable one and regularly wash it, we sanitize anything that comes out of V's bag.
-take good care of your own body by showering daily (logic to some, less to others)
-oral care is crucial; Listerine will become your best friend, besides Clorox. The mouth is an obvious carrier of bacteria so a tooth brushing at least morning and evening, like the dentist has told you for many years, is key. The use of Listerine helps considerably. Many people touch their mouth several times a day and then proceed by touching another object...NO!
-germs love your remote control. A study in the US was done regarding bacterial transfer in hospitals and the conclusion was that the number 1 source of bacterial transfer was remote controls in hospitals. So before you change the channel at the hospital, wipe it down! At home wipe it down regularly.
-get rid of dust gathering objects in the house. If it gathers dust it is of no use any way. Dust can carry germs through air movements. Keep the sanitized environment clean and easy to keep clean. Think modern, think minimal.
-we wear masks in public, especially now during flu season, because you can have the flu, transmit it during the first days post infections without showing any symptoms. (we stopped wearing masks in public after flu and cold season. I also wear masks when on a flight. Note the masks reduce the probability of an infection but does not eliminate it completely. The average duration a mask protects is 30 minutes per mask for the hospital masks (according to CCH), but online or at a medical store you can buy masks that last longer. People will judge and make nasty remarks like "look a germophobe", just tell yourself that 'you need a little bit of everything to make a world, even idiots'.
Wash your child's hands before eating and don't be shy to use baby bacterial wipes to clean hands regularly
Wash your child's hands before eating and don't be shy to use baby bacterial wipes to clean hands regularly
*Bathrooms: Mold is your enemy number one.
-we clean the bathrooms weekly with Clorox products. Mold is one of the more dangerous bacteria for BMT patients. Wear gloves and air the room before letting children inside as the smell of Clorox is not healthy. For the girls room we use Green or Pediatric rated products.
-toilets and sinks are germs' heaven and regularly wipe the toilet handle which carries less germs than your cell phone, nonetheless it carries many germs. Remember wear gloves when cleaning!!
-wash your hands after a toilet event (obviously)
-wash towels and floor mats weekly with Clorox
-pour a cup of Clorox down each drain, let it sit for a few minutes and then rinse drain with water, weekly. (400 days post transplant: we still do this bi-weekly)
*Kitchens:
-wipe down counters with disinfecting wipes before prepping food and after prepping food. (400 days post transplant: we still do this)
-wash your hands before and after feeding your child and prepping food.
-never feed your child with the spoon or finger you just used to see if the food was too warm.
-clean floor daily at end of day.
-don't allow dishes to accumulate in the sink overnight.
-pour a cup of Clorox down your drains weekly and rinse with water after a few minutes, if not it could damage your drainage pipes.
-feeding chairs, bibs and table: clean after every feeding with baby friendly or green bacterial wipes, especially the feeding trays. Wash high chair covers weekly.
-clean every night the handles to the fridge, knobs of stove and freezer.
-clean your fridge weekly which is impossible, so we do it monthly but do wipe the shelves weekly. Fridges contain a lot of bacteria due to the storage of vegetables and fruits, meats, milk, etc... try to eat processed food rather than fresh produce, meats, chicken or fish, especially the first 100 days post transplant.
-we use a bacterial Swifer to clean the floors nightly because it kills bacteria, is easy to use and the pad can be thrown out and replaced after every cleaning. Every other month we use a steamer with distilled water mixed with Clorox.....love the smell...not!
-keep your stove clean after every cooking!
*Bedrooms:
-wash linens weekly
-replace old pillows with new ones and zip them up in a bacterial protective cover, which can be washed regularly. Washing a pillow is hard and sending out for dry-cleaning, no thank you.
-we clean bedroom weekly, which means: sanitize furniture, window sills, etc..
-the kids room is sanitized top to bottom from cribs and changing tables, to diaper bin (bacterial hub like a toilet) and any other furniture. Linens are changed at least weekly but with toddlers it can be more often. The recommendation is to change twice a week. It is recommended not to have any type of stuffed animal in the room, we however do have stuffed animals but they get washed every week with...a cup of CLOROX!
If you have any carpet, vacuum weekly. We had new carpet placed in the apartment before moving in. If you spill something, clean up immediately and use a Lysol disinfectant spray or other disinfecting product to disinfect the area. Disinfecting sprays are very useful to disinfect sofas if you had pets in the house
*Living room/Office:
-we wipe down remote controls daily.
-if we eat in the living room (which is extremely rare) we will wipe down the chairs we eat in right after.
-we clean the living room from top to bottom every week, this means: sanitize every piece of furniture with bacterial wipes, we vacuum and clean floors thoroughly.
-the girls toys are sanitize with baby wipes regularly during the week.
*Laundry:
Note: I have been restricted by V of doing the laundry because apparently I use too much Clorox as a result what goes in red or blue comes out white. Personally, the color of innocence is beautiful but for some strange reason V thinks differently. So I am a folder and V is the washer...so unfair cause washing is soooooo much easier: put laundry in, pour liquid (in my case 1 liter of Clorox), turn button and voila! all done. While folding takes hours. However sometimes I do manage to sneak in and do some laundry...don't tell V ;) .
-it takes 40 degrees of temperature to kill common bacteria, so sometimes the dryer doesn't do the job. It is therefore recommended to add a color friendly (oops) cup of Clorox to each load of laundry. When drying try to use high temperature option. Don't worry your clothing will go to hell between the cleaning, cloroxing, washing and drying.
-empty the filter of the dryer after every dry cycle. And wash your hands after cleaning it and before touching anything other than the faucet!!!
*General air cleanliness:
-replace the air filter in your home with a MERV graded filter of 11 or higher. Filters will remove fungal germs, mold spores and bacteria from the air.
-we also use a IQAir filter in the house - honestly not certain it makes much additional difference but it is rated as one of the top devices.
-the cheap UV filtering systems gets much criticism as being inefficient, but we don't have one nor plan to have one because of the criticism.
*Car:
-sanitize car before discharge and regularly after that: wipe down anything you touch every time you enter the car after use (handles, steering wheel, baby chair, etc...
-cover your child going to the car and coming from the car. We use a plastic cover stroller for busy areas and a blanket over her head from the apartment to the garage or entering the hospital. We call her our little ghost and she loves it.
*Supplies:
If you have a friend working at a medical facility, physicians office or at one of the big global firms like P&G or JnJ ask them if they could use their employee/employer discount to help you in covering the costs of the supplies because your insurance company will not help in prevention and the bill runs up very fast, especially on disinfecting wipes.
-sanitizing wipes (7th generation for child - Clorox for other careful Clorox bleaches). The hospital wipes are ideal (not for kids) and hard core but it is recommended you wear gloves when using them.
-Johnson baby wipes for the kids hands and face as well as things they often touch.
-Swifer with Bacterial liquid and paper change pads - it is easy and quick for daily cleaning
-Clorox for drains
-vacuum cleaner with Heppa filter or bag-less vacuum cleaner. Refrain using steamers too much because they cause humidity and mold growth according to some studies. We use a steamer every other month to thoroughly clean hard floors but we use distilled water with a cup of Clorox.
-air filters
-masks, gloves, shoe covers, clothing covers,
-sanitizing spray (Lysol: careful there is a difference between odor killing sprays and germ killing spray!)
-automatic anti-bacterial soap dispenser
-hand sanitizer in car, jackets and all around the house.
Are all these products child friendly? No! But there are brands like 7th Generation that are considered more child friendly than others, in addition in the baby section of any super market there are also products (like Johnson Wipes) that are child friendly. Unfortunately you have to make a choice as to what takes priority, your ill child or the rest of the family. Having said all of this, one thing is for certain you will love Clorox, 7th Generation and bacterial wipes...beurk!
*Rules of the house:
-we keep the kids out of the bathroom and kitchen. Bathroom entrance is authorized only when it's bath time.
-everything gets sanitized from phones and keys to clothing when walking in.
-visitors leave their "STUFF" (bags, phones, keys) at the door. Even nurses. If they bring something past the blue line we will have them wipe it down, nurses would wipe down laptops.
-visitors leave their "STUFF" (bags, phones, keys) at the door. Even nurses. If they bring something past the blue line we will have them wipe it down, nurses would wipe down laptops.
-anybody who does not respect the rules of the house doesn't cross the blue line (know that home care nurses will respect your rules but you have to explain it to them; if they don't you are allowed the refuse their entrance to your home and call in a complaint)
-when in public wear a mask. (we ended this after flu and cold season)
etc....
-visitors are limited to essential people, unfortunately family (no offence; per Mama's rule) is not considered essential during flu season. This is a very harsh statement and it truly does not make us happy at all, but the least human contact the better during flu season. This cannot be done by families who have multiple children of which some go to school. We would not know how to handle such a situation but there are several books written on how to live healthy while surrounded by germs. Also many parents are in this situation and from hearsay they would have their children wash and change clothing upon entering the home.
This all may seem overwhelming and it is at times but as a human you have the infinite capacity of justifying behavior, of adapting to new environments and before you know it you will be wiping down things without realizing it. It will become normal to you with no effort. Don’t let us scare you. At first it scared us, sometimes it exhausts us and makes us feel that there never will be a normal life again but this is all part of the new normal. We have an advantage that we are informed and prepared, thus we can manage this risk; however not necessarily fully eliminate it. Remember: Hope for the best, prepare for the worst and between those two enjoy every minute.
Wow! How overwhelming, for sure. I am one of a team of three neighbors preparing to get the home of a neighbor ready for a child who was just diagnosed with HLH, in in the process of chemotherapy, and who will be returning home in a few days prior BMT. Are we capable of doing all of this properly? Should we consider a professional "sanitizing" team (is there such a thing? So confused and so concerned for this family just embarking on what you have been dealing with already. Thank you for your information. I wish the best for your family as I do for this family.
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