The costs of raising medically complex children

Last weekend we had 5 kids in our house, 3 of those five have feeding tubes and another has a life threatening allergy... medically complex was literally walking around the house lol. But as we watched Bill Mahr (after the kids went to bed) and the adults talked, we were discussing the costs of raising medically complex kids. A line I hear a lot is about how people who cost more in medical needs should pay more and I would like to present an alternate side.

I want to state first that we do this all out of love for our children. This is not a complaint, this is not bashing them or blaming them for anything... this is something that before I lived in the medically complex world I had no idea about and maybe you are just like me, so I try to use our life circumstances to educate.

So here are some things that have different costs because of being a medically complex family (these do not include the costs of the medical care itself), these are the ones for us, because I can tell our story best, other families will have other/different needs:

• vehicle: We have to have something large enough for a wheelchair, stroller and a lot of medical equipment. Driving a small fuel efficient car wont work. We also have to drive something reliable. We need to know we can get someplace incase of emergency and for the many appointments the girls have. 
• Bed: Jillian has a Comfy Lift bed... her bed cost more then mine. We started the conversation with Lydia's doctors yesterday about the fact that she needs one as well. These beds are well over $500... I would not typically spend that much on the mattress for a toddler. Additionally you still need a bed frame to put it in. Insurance does not cover this. We also have invested in many bouncers, angled sleepers and rock n plays between the girls becuase they always need to sleep at a minimum of a 30 degree angle
• Passy: I should have bought stock in pacifiers when Jillian was born. There are days where we go through one a day. Both girls are also particular about which ones they will take. This is the only thing they suck on and most people have a need to suck so we buy a lot of pacifiers at our house. 
• Nursery water: we live in the country and have hard mineral water. Our water also has something in it where it smells when it gets warm. We have had it tested and it is safe for most people to drink however we were told it is best that the girls use bottled water. One gallon lasts us two days. 
• Vitamins: We pay over $1000 a year in vitamins for the Jillian. Jilli is on the mito cocktail and Lydia will likely start on it soon which will raise the cost again. Many of these vitamins help the girls just as much as their prescriptions
• Probiotics: Both girls also take probiotics and they help a lot at keeping the yeast infections at bay and with decreasing laxatives. We spend about $60 a month in probiotics
• Food at the hospital: hospital food is not cheep and parent food at our local hospital seems to keep going up in price and I am not sure quality is following that upword trend. Since starting to stay at RMH this has been relieved some because most nights they have dinner provided but between clinic appointments and overnight stays the cost to eat at the hospital adds up fast
• Specific toys: There are specific goals the girls are always working on to help them and often we are looking for ways to make that fun. We buy a lot of things to help with their targeted goals. 
• Stroller: cheep strollers tip when you put medical equipment on them or the baskets break, or are not supportive enough for when the girls' muscles give out. We have two Baby Jogger strollers because of this to be able to support their needs. The girls also sleep in the stroller at RMH or on vacation so it needs to angle in the correct way to also serve as their bed.
• Face stickers: we buy Jilli's face stickers for her oxygen out of pocket
• Formula: right now formula is covered by the state however we are always shorted some and buy some out of pocket every year (and before having medicaid as a secondary paid outright for it) This is one of the most expensive formulas on the market. Our medical supply company charges $65 a can and a can last Jilli 2 days
• Electricity: oxygen concentrators cost money in electricity to run.
• Gas to get to appointments
• Phones: we pay more with a national carrier to make sure we have service everywhere. Brent is also working on setting up an emergency back up in case we for some reason don't have cell phone use. 
• Bags to carry everything: we have gone through multiple diapers bags and such because oxygen is heavy to bring places and it breaks bags. 
• Diapers and liners: Jillian pees a lot (Lydia doesn't and that is still an issue we are trying to figure out) and we have tried cheaper diapers but they don't hold enough. The state will now provide diapers since she is 4 however the only kind that holds enough for us not having to do laundry daily is Huggies overnights and those are not covered. We have recently started to buy liners to go in them since we added more water she is now peeing more overnight, that is what happens with a total liquid diet.  
• Dish soap: we can't buy the cheep stuff because their formula is hard to get clean out of bottles so we have to buy the name brand which adds up
• Clothes that work with feeding tubes: there are many things we find cute but that just don't work with having a feeding tube. While we are creative, sometimes it means paying a little more. Stomach acid also stains clothing really badly and sometimes you have days like today where both kids popped their med port and drained bile and you always hope it will come out but there is many articles of clothing that stomach bile has ruined 
• Furniture: Brent and I were talking about couches and how we have to go with leather because of popping med ports and drainage bags leaking. We have a cheap fabric ikea couch in our living room but it is really showing its wear from fluids leaking on it so when we replace it we are going to have to buy leather
• Housing: reality is we are going to need a new house as ours is not accessible to the girls. We have to pay off Brent's student loans first before that is an option but it is not going to be easy to find a house that is accessible in the ways we need. We have talked that we might have to build but that will cost more.

So what is the point of that list? Its not to make you feel bad or sorry for us... but it is to make a point... medically complex parenting is expensive even without the medial, insurance, therapy, and pharmacy bills. Many medically complex families have at least one parent at home to take care of the child's medical needs and all of the appointment/therapy/ insurance fighting needs. We will always have costs that come with the different needs. Having insurance that is the same price as others just levels the playing field a little bit and helps to offset the disproportion a bit. I understand the logic behind saying those who use more should pay more but in this instance we always will between things insurance does not cover and extra hidden costs that go along with the extra needs. But we pay it for our kids. We work hard to provide these things for them. We are not in the top x percent of incomes however my heart aches for the families lower then us as I wonder how they get by and know that many things are just have to be done without which sometimes hinders the growth of their child or the parents themselves go without basic needs. But we put our kids first. But I wanted to write this to expose the hidden costs, the things before having the girls I would have never thought of and I too before the girls would have probably been saying people that spend more should pay more however after seeing all of this my tune has changed. Maybe this will help mold your view too.