With the news of the government's shutdown today, a sense of panic has arisen among the families of children who depend on WIC and other government programs to help provide expensive, specialized formula for kids with feeding tubes or with medical conditions that necessitate specialized formula. This formula is often exempted from insurance policies for reasons such as the child not having the "right" diagnosis or that the child is taking in the specialized formula orally rather than through a feeding tube. Without assistance from WIC, the costs of these formulas would be devastating to many families. These are not your average baby formulas and cannot be purchased off the shelves at your local grocery store. They often cost 2-3 times what regular baby formula costs and have to be special ordered by a pharmacy or home health company, or purchased online. When your child is going through 15 or 16 cans of formula a month, the cost is practically a second mortgage. Many families spend countless hours on the phone with insurance, writing appeals, making special trips to the doctor to get help with the appeals, and jumping through ridiculous hoops to make it happen but without certain diagnoses, they are stonewalled and cannot get insurance coverage for formula, with or without a feeding tube. For those who are "lucky enough" to qualify financially, WIC is a godsend and they (and their children) would be in a world of hurt without it. Nobody ever plans to have, and few ever anticipate having a child with complex medical needs or the associated costs. I know we certainly didn't. After having 3 healthy children with nothing more than the typical childhood "stuff," we assumed that baby #4 would follow suit but here we are almost 4 years later and still on the feeding tube.
I'm not going to get into the whole government shutdown debate, but based on some comments I've seen floating around on facebook this morning about public assistance, I want people who are unfamiliar with the struggles that specialized formula entails to understand a few things before they make snap judgments about WIC shutting down. I remember very clearly sitting at a computer in the library at the children's hospital one afternoon looking up the formula Raya had been put on, after having been told that it was possible that insurance wouldn't cover it. To add to the stress of unexpectedly having a baby in the hospital, being told that my breast milk was doing her more harm than good, having to learn to put her shiny new feeding tube in, and having to deal with the emotions of a baby that smelled like pre-digested formula vomit instead of smelling like my baby, I was shocked to see how much this new formula was going to cost us out-of-pocket if insurance didn't cover it. As the retail price popped up on the screen, my eyes filled with tears and I felt choked by an overwhelming sense of panic and fear. The price tag on the small amount of formula she was taking at that point already exceeded the amount of money we spent on groceries for the entire family. We did not qualify for WIC. We were very fortunate that insurance did cover her formula, but many families are not that lucky, and WIC is their saving grace for formula. Now those families are at risk of not being able to get the formula that is, for many of their children, the ONLY source of nutrition they are physically able to tolerate.
I'm rambling, but here's the point I'm eventually getting to. You NEVER know when your access to medical supplies will be cut off. We often hear about preparing for natural disasters, power outages, evacuations, and things of that nature, but there are other kinds of emergencies to prepare for too. Financial emergencies are just as scary, and perhaps scarier, than natural disasters. Loss of a job means loss of insurance coverage. Loss of insurance coverage means no feeding tube supplies. As many are worrying about today, the loss of WIC coverage for formula may equate to families not being able to get their child's formula this month. For those unfamiliar, no supplies means NO WAY TO FEED YOUR CHILD. Period.
Another moment of panic that will forever be etched into my memory happened about 2 weeks after Raya got out of the hospital the first time. We decided to go to my in-laws' house for the weekend, which is about an hour away. As we were driving up the dirt road to their house, I suddenly couldn't remember if we had brought her formula and feeding tube supplies for the weekend. I was hit by the overwhelming and terrifying reality of Raya's situation: Raya's life was at the mercy of our home health company's deliveries. Insurance allotted her the exact amount of formula that she needed per month and not an ounce more. If she threw up an entire feed, she was out of luck and those calories couldn't be replaced or we'd run out at the end of the month. If I spilled some, she was out of luck. If we went out of town and didn't bring enough, she was out of luck because we couldn't just run to the store and buy it. I know this scenario is hard to imagine until you're in that position because until I was in that position myself, I could not fathom having so little control over feeding my child. When there is only ONE thing that your child can have, and that thing can't be purchased at the grocery store or borrowed from your neighbor, the thought of running out or not being able to get any of it is TERRIFYING. That moment of panic in the car that day changed the way I thought about emergency preparedness. I may not have as much control over Raya's "food storage" as I do over the rest of the family's, but hers is every bit as important and I have to do what I can to make sure she is taken care of.
Just as you would stockpile emergency supplies and food for the rest of your family, it is critical to stockpile medical supplies and formula for a child with a feeding tube or a child who is dependent on formula. This can be difficult when you are receiving only the exact amount your child needs per month, but it can and must be done. Ideally, it would be great to have 2-4 weeks' worth of extra formula & supplies on hand. In that amount of time, whatever has caused the disruption in formula & supply delivery can probably be resolved or a good "plan B" can be devised. It sounds completely daunting and impossible, but you start a little at a time and build as you go. There are ways of acquiring extra formula and supplies that are legal, ethical and affordable. Here are a few:
1. Make a list of everything you use on a daily basis. Unless you know exactly what you need, you will end up with a lot of things you don't need and might miss important things that you don't realize you need more of. Just as you would make a list of the amount of food each person in your family would need for an emergency supply, make a list of the supplies your child would need for a day, a week, and a month, and then work towards setting aside the items on your list. (Don't forget to rotate supplies so that nothing expires though!)
2. Order everything your insurance allows every month, whether you think you need it that month or not. You never know when there might be a shortage, manufacturing problem, recall, or disruption in delivery that will prevent you from getting something. You may not need it this month but one of those things might happen next month when you DO need it.
3. If you are ever in the hospital, don't forget to order your supplies for rest of the month. The first time we ever started to have a little bit of extra formula & a few extra pump bags was when Raya was admitted for her G tube surgery and ended up staying for 5 days. That was 5 days' worth of our formula supply that we weren't using. We were also able to take home the whole day's worth of formula that the hospital had made for her on the day she was discharged. It was only a few days' worth, but it was a start!
*Note: The point of this statement is not to try and cheat the system by essentially getting your insurance to pay for double of everything. The point is that if you do not order the supplies you will need for the days of the month that you are NOT inpatient, you run the risk of getting farther behind. Most supply companies require you to make an order at least every 45 days, and if you do not, then your order will be delayed because the supply company will have to go through the process of getting insurance authorization and possibly getting new prescriptions for some items. To avoid getting farther behind in storing the supplies you need in case of emergency, don't forget to order even if you are inpatient.
4. Find what you need on the formula and supply exchanges. A lot of kids don't stay on the same formula indefinitely, and when they switch, the previous formula doesn't do anything but take up space. It is illegal to sell formula that was paid for by insurance for more than just the out-of-pocket expenses, so you can often find these specialized formulas at low cost or "FFS", meaning just for the cost of shipping it to you. Budget a monthly amount for getting extra supplies & formula from these exchanges and then watch for the things you need. By the same token, if you find that you have a surplus of something, consider posting it on one of the exchanges. You'll be helping someone else ensure that their child has the supplies they need. Here is a list of exchanges: http://www.feedingtubeawareness.org/SupplyExchanges.html
5. Ask for more of what you need. Doctors' offices usually have cans of formula they can give out as samples. Our GI nurse sent us home with a whole bag full of formula once because the expiration dates on the cans were the next day so they legally weren't allowed to give it to anyone after that day. Of course it was still perfectly good, and I gladly took it!
Extension tubes are one item that some people have a very difficult time getting very many of from insurance & home health for various reasons. If you are one of those individuals who is currently only getting 1 or 2 per month, start by asking your home health company for at least 4. The first time I ordered supplies, I didn't know how many I was "allowed" to order so I just told them I needed extension tubes. They sent 2, which was most definitely not enough for a child that was fed 24 hours a day. The next month I commented about how gross the 2 extensions were and the lady said, "Oh, well we can send you 4 without getting a prescription from the doctor." I was both grateful and angry that nobody had bothered to mention that or offer to send us 4 before that. Later on, we were able to get a prescription for more because we were using both ports of a GJ tube 24 hours a day. Sometimes all you have to do is ask.
6. Get the most out of your supplies. One thing that was hard for me in the beginning (and still is, to a degree) is the amount of waste involved in tube feeding. By that I mean that there are a lot of things we use once and then throw away. Of course for sanitary reasons, it has to be this way, but there are some things that you can use longer than others. Extension tubes are one thing that can be used a little longer than many of us use them for without any consequence to health. If you are allotted 4 per month, try to use them for 10 days instead of 7. You can extend the life of extension tubes by rinsing them with hot water in between feeds and hanging them to dry with the clamp open. Here's one way to do that using a binder clip:
If your child is on continuous feeds, you may want to rotate between two extensions so that you can clean one while the other is in use. When gunk starts to build up in the tube, rinse it with hot water to get as much out as you can and then take the back of a butter knife and scrape the tube with it. I like to go from the end you plug the pump tubing into to the end you plug into the button because if you go the other way, you get all the gunk to one end and then when you rinse it, it just goes back into the extension tube. Sometimes you have to turn the tube a little and scrape it down again but this method works pretty well for cleaning them.
Another problem I've run into with extension tubes is that once they start to get stiff after a few days' use, if you're clamping them in the same spot all the time, they get a permanent kink in the spot you've clamped them in. You can avoid that by clamping in different spots and leaving the tube unclamped when it's disconnected from the button.
Pump bags are another thing that can be used longer than the recommended 24 hours in case of emergency. (This is something that I personally would only do if there was a disruption to our supply delivery or we lost insurance coverage & were having to pay out-of-pocket.) If you need to use a bag longer than 24 hours, you need to take precautions to prevent bacterial growth. First, keep an ice pack with the pump bag when it is in use. Tuck one inside the backpack, strap it on with rubber bands, hang the pump bag & ice pack in a bag from the IV pole, etc. When the pump bag is not in use, remove it from the pump and put it in the refrigerator whether there is formula in it still or not. After all feeds have been completed for the day, wash the bag with hot water. I personally do not use soap because it's difficult to get it all out. Store the bag in the refrigerator overnight if it's not being used for an overnight feed, and whenever it is not in use. Again, this is not recommended for normal circumstances but if you are going to run out of pump bags before you are scheduled to get more, this is definitely better than running out. These are just a couple of examples.
7. Think outside the box. If your child is able to eat any foods by mouth, make sure you have some of those foods in your emergency food supply. If there are any safe foods that your child is able to tolerate, keep a few jars of baby food purees on hand since they can easily be mixed with commercial formulas to add extra calories or extend your supply in the case of an emergency. They can also be bolus fed with a syringe if your child tolerates that.
Remember that some supplies can be used to substitute for others. For example, if something catastrophic happens to your feeding pump but you have a whole basket full of 60ml syringes, you can do small bolus feeds every 10-15 minutes to compensate for the pump. Grueling, yes, but effective. You could also convert a pump bag to a gravity bag by clipping off the flow regulator inside the part of the teal tubing where the droplet symbol is on an Infinity bag, or using a butter knife to turn the valve to the open position on a Joey bag. If your child needs to be vented but you're out of Farrell bags, convert an old pump bag to a Farrell bag by cutting the tubing on either side of the section that goes into the pump, pulling off that section, and then sliding the larger diameter tubing over both ends of the long tubing to reconnect them. Be creative with what you have access to. (and make sure you have plenty of medical tape to help with your makeshift supply creations.)
If your child is on a blenderized diet, make 72 hours' worth of extra blended food, freeze it in portion sizes, and then make sure that you have ice packs and a cooler on hand in case of a power outage or emergency that requires evacuation. It is also a good idea to have things on hand that could be fed through the tube without the use of a blender, such as baby food purees and baby cereal that dissolves easily in water. (and make sure you have water)
To summarize, do what you can to build up a 2-4 week supply of whatever medical supplies and formula your child needs so that if there is ever a situation that prevents you from getting your usual delivery, you will still be able to feed your child. This doesn't mean that you need to panic and start hoarding everything you can get your hands on, but take inventory of what you need on a daily and weekly basis and then start working towards increasing your on-hand supply of those things. Don't forget to rotate your supplies so that nothing expires! You don't need to panic, but advanced preparation is key in getting through an emergency of any kind
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