1. We haven't always had extras of things and we've learned our lessons about that. After Raya's G tube surgery we went for a month with the same 2 grimy extension tubes because home health & insurance took way too long to coordinate things after surgery. Then when home health actually did send us extensions, they were for the wrong kind of tube so we were stuck with the same old dirty ones until they got us the right ones. When Raya had an NG tube, we went for a couple of months with no extra because insurance would only pay for 1 every 30 days. It took several phone calls but I finally begged and argued enough that insurance agreed to allow home health to ship us 3 at once in case her tube got damaged beyond usability.
We've also had a couple of times where we got dangerously low on her formula for one reason or another (like, using the last half of the last can when the new shipment finally showed up). We've had to wash and reuse pump bags for more than the recommended 24 hours, and we've had to scrub and oil the same syringes to keep them working longer so we didn't run out of those too. Once or twice, I've decided not to order something from home health because I didn't think we'd need it only to have that item be unavailable the next time I need to order it. I LEARNED MY LESSON!! Way back in the beginning, a friend told me to always order everything that insurance will pay for because you NEVER KNOW what might happen! It's not unrealistic to think that there could be a shortage of something at some point.
2. Having a child with any type of special medical needs means that you have to take extra measures to prepare for emergencies. For a tube fed child who is completely dependent on specialized formula and a feeding pump, that means that if you have the opportunity to acquire surplus supplies, you absolutely should do it. There are all different types of emergencies that require all different types of preparation. For example:
- If you have a child with an NG tube, you need to have a small emergency kit with your child wherever they go that includes everything necessary to reinsert the tube. For us, this included the stylet (wire that goes in the tube while it's being inserted) and/or a spare tube if we had one, a small amount of water to wet the end of the tube with and to flush the tube once it was in, a 5ml syringe to check placement and flush the tube, a stethoscope to check placement, duoderm & tegaderm adhesives to tape the tube to her cheek, and durapore tape to tape the tube to her shirt.
- If your child has a G tube, you would need a kit that has a bare minimum of a spare G tube and 6ml luer tip syringe OR a foley catheter to hold the stoma open en route to the emergency room. In addition, we also carry a spare extension tube, 60ml cath tip syringe, 5 or 10ml slip tip syringe, water, formula, Hypafix or Medipore (cloth tape), Micropore (paper tape), split gauze, and sometimes a spare pump bag.
2. How did we end up with so much and why do we keep it. What we have right now is an accumulation of 2 years and 3 months of tube feeding. The first time we ever had any type of "surplus" in our supply was when Raya had her G tube surgery. She was in the hospital for 5 days which meant that during those 5 days, we weren't using the formula or pump bags that we had at home so they became extra. Then a couple months later, we had another 2 weeks at the hospital so we had another 2 weeks' worth of supplies that didn't get used. Before that, we were living a day at a time with her pump bags & formula and didn't have 1 day's worth to spare, so it was a huge relief to have some extras. A couple months later we had another week at another hospital and accumulated a little more.
About a year ago, Raya started tolerating a little bit of real food. On days when she has eaten a significant number of calories or we've put blenderized food through her tube, we've been able to cut back on the amount of formula she takes in that day. She is very unpredictable with oral intake though, and what she does take in doesn't meet the nutritional requirements for a child her age so she is still completely dependent on the formula for her nutrition, which is why we can't risk reducing the amount that we get from home health. Our supply continues to build on days when she doesn't need as much, but in reality she is still 100% dependent on her feeding tube and formula.
Donny and I were both raised in a faith that places a lot of emphasis on self-reliance and keeping a supply of food storage on hand to rely on in times of need. One weekend when Raya was 3 months old and had only been tube feeding for a couple of weeks, we took a little trip to visit my in-laws. It was an hour's drive to their house and when we were almost there, I had a little panic attack because I suddenly couldn't remember if I had packed everything we needed. That was when I also started to realize that somehow, I needed to start building a "food supply" for Raya too. She was on Neocate formula, which you can't just run to the store and buy, and it was just an awful feeling know that even if the rest of us had food storage, Raya was at the mercy of home health and insurance. It was a HORRIBLE feeling, and changed the way I viewed things, and that's why we order and keep everything we're able to get.
3. We are very conservative in our use of supplies and use things until we can't use them anymore. Case in point, the extra pump backpack. When we changed insurance last year, we were able to have a new backpack covered. Her old one that she's been using for almost 2 years now is literally falling apart at the seams. It came with her pump when we switched to the Zevex Infinity pump from the Kangaroo Joey, and it's not very well made. The lining peeled out after a couple of months, there's a hole in the top from the weight of the pump bag pulling on the seam, one of the straps is about to come unstitched, one strap doesn't stay adjusted to the right length anymore, and it wasn't made to be compatible with the strap holes on the new style pump bags. When the new one came, I was so excited and couldn't wait to dump the old one, but then I decided that there was no sense in getting out a new one when the old one still has some life left in it. I put the new one away (which is higher quality anyway) and when the old one is no longer functional, we'll switch. That way, if she's still using the feeding pump when she goes to school, she will have a backpack to keep it in that's not falling apart and we'll avoid a future out of pocket cost of replacing it.
4. I've learned not to take "No" for an answer and have fought for what we're currently allotted. Everything we have has been obtained honestly and ethically. I know at some point everyone who deals with enteral feeding spends at least a few hours on the phone with insurance and/or home health trying to get more supplies and I have done a lot of that. I don't know all the behind-the-scenes stuff about how home health companies and insurance companies deal with each other, but it has seemed at times that home health companies start people out with a bare minimum and it never occurs to the patient that they can ask for more of something like extension tubes. Also, in fairness, customer service reps from home health & insurance aren't generally experienced in enteral feeding and only know what they've been taught in their job training so there is a lot that they don't understand about the supply needs of a tube feeder.
When Raya first had her G tube, home health only sent us 2 extension tubes. I don't know if it was the specific formula Raya was on at the time or if it had more to do with the fact that she was being fed for 22 hours a day, but after about 5 days, that extension tube was absolutely disgusting. It smelled bad, there was gunky formula built up inside of it that I absolutely could not get out no matter what cleaning techniques I used, and it made me feel like a bad parent to feed her through something so gross. I would never expect my other kids to eat off of a filthy plate, so why would I be okay with feeding my GI compromised baby through a dirty extension tube? When I called home health to make our next order, I explained to the customer service rep that there was absolutely no way we could continue to feed her with only 2 extension tubes and that we needed more. To my surprise, she said, "Okay, I can send you 4 but any more than that and we'll have to get a prescription from her doctor." It actually made me angry that it was so simple as asking for more but nobody had ever offered 4 or asked if 2 was enough in the first place.
A few months later when Raya got her GJ tube, I had to lobby for more extension tubes again. She was being fed and drained continuously so both ports were in constant use. We had a lot of extension tubes breaking from so much use and they were getting dirtier faster, especially the ones we used to drain bile out of her stomach. If you've ever smelled bile, you'll understand what I mean. Again, I explained the situation to home health and they were able to get us what we needed. I think that time we may have had to get a prescription from the doctor but that wasn't a problem. (we're very lucky to have a great doctor & great nurses who help us out with things like that)
In summary, I just want people to understand that we're not being greedy or doing anything wrong by having a storage of Raya's medical supplies, we're just using the resources that have been made available to us to plan for her future and make sure she's taken care of. We know how scary it can be to not have the supplies you need. If you are struggling to get supplies and formula covered or are short on something that you really need, there are several supply and formula exchanges that allow you to get things for very low costs. A lot of people end up having extras of things that insurance has paid for and they can't sell them so they're willing to donate them for the cost of shipping. If you have things that you can no longer use, PLEASE don't throw them away! Here's a list of several of the supply exchanges, courtesy of Feeding Tube Awareness.