Wednesday, September 24, 2014

A Handicap Spot

Handicap Assistance > Accessibility > Sign
The handicap placard for vehicles: I had mixed emotions when Jaycee's came in the mail a year ago. It was a sad reality that my child was deemed "handicapped" but also glad that this would make life a little easier in some ways.
I initially asked Jaycee's doctor about getting the placard because Jaycee's lung issues really impacted our trips out.
  • If the weather is really hot or really cold, on family outings my husband would have to drop Jaycee and I off close to the entrance to help her breathing. Just a few minutes in freezing air or humid air can make her wheeze.
  • If  I go to a shopping mall or a large store, Jaycee needs to use her stroller because she can't walk long distances well.
  • In a large grocery store, I have to push Jaycee in her stroller while pulling the shopping cart behind us. It's a very tiring outing!

I didn't know if she'd be eligible for the placard that would allow us to park closer to buildings but based upon her many lung issues and her diagnosis of Down syndrome, she was eligible.

I had no idea that when I applied for the placard that I would receive it right when Jaycee was in the hospital for some serious health issues. When we received the placard, she was actually wheelchair bound and unable to walk. Talk about good timing! In time, she got her skills back, but still the placard has been beneficial when Jaycee has been sick and in the aforementioned situations.

I did feel strange when I placed that handicap placard on my rear view mirror. I felt like I was a hanging a sign that said, "My child is disabled." It felt odd for a long time. But, now I have gotten use to it. She needs the shorter walking distances. She needs this perk when it's hard for her to breathe. It may be hard for this mom to face some hard truths about Jaycee's conditions at times, but facing them and moving forward helps our whole family.

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Wednesday, September 17, 2014

Medical Expenses: My Tips for Paying Them Off

Medical bills... Those two words can make me break into a cold sweat. Prior to having Jaycee, I thought that as long as you had health insurance, you were fine. I found out that having insurance helps, but there are still deductibles, co-pays, and some things that simply aren't covered by insurance. Medications, doctor and specialists co-pays, emergency room co-pays, hotel stays related to hospital admissions, transports, it all adds up. In 8 years, I know for sure we have spent over $50,000 in medical expenses. At some point, I quit counting because it was just too depressing. So, believe me when I say that I know about medical expenses. So, here are things, I have learned over the years.

-First and foremost, know what is covered in your insurance plan! We found out early on that our insurance only pays for emergency room visits if the child was admitted to the hospital. Therefore, we try not to use the emergency room unless it truly can't wait until tomorrow. Emergency room care is expensive if you are stuck with the entire bill. Also, it's also important to find out who is in network with your insurance, since this will be significantly cheaper than out of network providers. You can usually find this information out all online now, so it makes it easier.

-Check if there is a discount. Sometimes hospitals will offer 10-20% off the bill if you pay within 30 days or less. Usually, this applies to larger balances like $500 or more. Almost always this discount offer will be marked on your bill or sometimes my bill will say "call for discount." Make the call if it says it because every dollar off counts.

-Often times, hospitals or larger home health or therapy services will provide financial assistance on what you owe. Sometimes, the hospital with advertise this information and sometimes they don't, so you have to ask.The times we have applied for financial assistance from a hospital, it has required lots of paperwork. They want to know your income, your expenses, a copy of your income tax return, how much money you have on hand, your assests, etc. It really is an overwhelming process that I think probably weeds out most people. But, by going through the long application process, it has helped us get 10-68% off of our bill.

I have learned that if your situation needs explaining, then add a letter to the financial assistance application explaining what needs to be explained in order to make your case for why you need help. If our income has changed significantly from our income tax, then I explain it. For instance, when my husband gets laid off from his job, I explain that. I list my daughter's medical conditions, and her monthly expenses in total for her medical care. If I have loyally used a hospital for years, then I tell them that too. Basically, in my letter I try to give any information that would explain why we need help and how Jaycee's medical conditions have affected our lives (i.e. missed work due to illness). I don't say anything that isn't true. I don't fudge the numbers. I simply present our case. Sometimes, we barely get anything knocked off our bill but sometimes it has really paid off!

-Ask for a payment plan when all else fails. If you can't get a discount or anything else, most hospitals or big offices are open to letting you make payments interest free. The larger the balance, the longer places will drag out the payments. Usually, they will offer something like a payoff by 2 months. I say I can't do it, and we bargain back and forth. Basically, the first offer they give you usually isn't the only one available. I usually try to ask for longer than I need just in case something comes up since it is interest free. Like, if I feel like I could pay off something in 6 months but they will go 8 months, then I will do the 8 months. You can never give them that information though. If they know you could pay it off in 6 months, then they are not going to stretch it out for your convenience. Again, if there's a income change or situational change that explains why I need to make payments, then I do that. If I'm on a payment plan, I make the payments on time every time. Sometimes, I pay them off early and sometimes I need the full time to pay it off. I have been told that they can take your account to a collections agency if you ever miss a payment, but I do not have first hand experience with this.

-The hardest people to deal with for us have been helicopter transport companies. They have NOT gone beyond two years of payments no matter how expensive the bill is and we are talking about thousands of dollars! The first time we got a $12,000 bill for Jaycee's first helicopter transport we were depressed, astounded, and perplexed. Really? It costs that much! And, we weren't the ones who ordered the helicopter transport yet we were stuck with this bill we were totally unprepared for. We have had two transport bills. They did give a small discount towards the end just to get our account closed. The second bill was taken care of by applying for state assistance, more on that in a minute. But the helicopter companies we have dealt with are not overly helpful or friendly.

Just fyi: There are medical helicopter insurance policies you can purchase for these situations. However, these would not benefit our situation with Jaycee. So, our best plan on helicopter transports is to avoid them, which we have done by transporting her ourselves using her monitor and home oxygen.

-Apply for state assistance. Our state has medical coverage for children based upon income guidelines. Normally, we don't qualify for anything. But, I have learned that we do qualify for something called a spend down program when our medical expenses are really high in a given month. So, the last time she got a helicopter transport, I applied for medical assistance the moment I got home from the hospital in preparation for the large bill. The only way to know if you are eligible is to apply. The first time I applied for help, I had mixed feelings about it but ultimately you have to do whatever you need to do to help your family.

-When your child is in the hospital, find hotels with a hospital discount. Some hospitals will tell you about hotels that work with their families, but they don't always know all of them. I have learned to call all the hotels around the hospital to see what their rates are. There may be a $15-30 difference between them. Of course, the hotels within walking distance or those offering breakfast are other factors to consider. Or, find out if there is a Ronald McDonald House near you. The times we have been offered to use the RM House has been when a long stay is anticipated for Jaycee. Usually, the social worker has referred us to the House and a room is offered if it's available. We have only used the Ronald McDonald House once when Jaycee was born. We paid a very small amount to stay there. We had a chore to do each day like empty the dishwasher or take out the trash. It was a nice place to stay but the one we were in wasn't private. You had to share a bathroom and you could only eat in the kitchen area. It was accommodating for families and really nice, but sometimes when you are stressed and upset, you just want a private hotel room to let your feelings go and dive into some cake!

-Let people know if you are seriously in a bind. People are usually helpful if they know there is a need. If people offer help, let them help. We've had everything from gift cards, cash, snacks, and free meals given to us during or after a hospital admission. Churches, individuals, friends, and family members are all people who have given to us, almost always without us asking. Sometimes, just telling someone that you're paying $120 a night for a hotel room will spring people into action.

-Consider using a 90 day prescription medication mail service. For me, I saved some significant money by ordering Jaycee's inhalers and other oral medications at a 90 day mail order prescription service. The biggest savings have been on the inhalers. However, when I've had a problem with the company sending the medication, it's been nearly impossible to correct it because I can't walk in some where and explain it. Instead, I have gotten the run around on the phone. So, while I have saved money with this 90 day service, I can't say I'm completely satisfied with the service.

-Time purchasing of medical equipment with deductibles and co-pays. As soon as our co-pays are met, I order Jaycee's bi-pap, oxygen saturation monitor probes, and nasal cannula supplies. Before the end of the year, I will make another order before all of my co-pays start over again. Certain supplies can only be ordered so many times a year or every so many months with our insurance, so I try to keep track of it.

All in all, the only way to make medical bills go away completely is to pay them off. There is no magical poof button that makes them disappear. But making small changes and investigating some options may help you save some money.

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Wednesday, September 10, 2014

Our Hospital: St. Louis Children's

For 8 years, St. Louis Children's Hospital has been a part of our life. It's where Jaycee's 2 open heart surgeries, 2 eye surgeries, 2 heart ablations, and multiple tests have been conducted. It's where we go to see many of her specialists for routine care and where we go when she's sick and needs emergency care. Basically, we have spent a lot of time there. These are my favorite things about the hospital in no particular order.

1. The sibling playroom: Located in the lower level of the hospital, the playroom is a place where siblings of inpatients can be dropped off and watched by adults sort of like a daycare. It's for ages 2-11. The playroom is open for 3 hour stretches, 1-3x a day depending on the day.

We have utilized the sibling play room multiple times for Elijah. We love having Elijah visit Jaycee in the hospital, but after an hour or so, he's too active for her tiny hospital room. That's when we can take Elijah to the playroom to let him run around and play for awhile. He loves all the toys in the playroom and the snacks. Whenever Elijah comes to visit Jaycee, he always asks if the playroom is open.

2. Family Centered Rounds: The doctors and nurses really make an attempt for families to be apart of rounds in the mornings so that they can give information, ask questions, and understand the plan of care. If we are in Jaycee's room, they always come in and tell us when they are ready to begin discussing her in rounds and invite us to join in. This has changed since a few years ago when sometimes we found out about rounds after the fact even though we were sitting in the room. I really like being involved in rounds so I can ask questions and see what everyone is thinking.

3. The Caring Staff: The doctors, nurses, and respiratory therapists that take care of Jaycee are almost always caring, respectful, and nice people. I say almost always because once in awhile you get someone who is a little cold or unfriendly. But for the most part, the staff seem to enjoy what they are doing and value the families they are working with. They frequently ask if we need anything, which is nice because I don't feel like I'm interrupting their work to ask for juice. Even the respiratory therapists ask if we need anything. I hardly ever do, but it's nice to be asked. The other thing that is nice about the staff is that at shift change the nurse that you are familiar with tells you that she is leaving and introduces you to who is taking over. It's nice to be in the know about who is caring for your child.

4. Child Life: Child life does a lot of different things at the hospital but I'll only speak about my experiences with Jaycee. Once in the emergency room, Jaycee was very upset about getting an IV started. A child life specialist came in with the I-Pad with a video familiar to Jaycee to try to distract her from what was going on. It was nice to have this when she was upset. Sometimes the child life people will bring Jaycee toys or other favorite items to keep her calm and happy.

5. The Ronald McDonald Room: This area is located in the hospital and is available for families who have a child that is an inpatient. This "room" has two bathrooms with showers, a laundry area, a small kitchen area, and a living area with a television and computers. It is open during the day (not overnight) and is staffed by volunteers. I go there mainly for the nice showers, which are hard to find for us parents. They also have a closet stocked full of free toiletries for all those things I forgot to pack or didn't have time to get, which is extremely helpful. The laundry area is free to use and free snacks are offered too.

There's other things that are nice about Children's but these are the main ones for us. Hey, if you have to be in the hospital, you might as well be in one you like.
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Tuesday, September 2, 2014

A Hospital Veteran

Well, the rhinovirus struck Jaycee again. For the 4th time in 12 months, the virus has sent Jaycee to the hospital. Whenever we are in the hospital, we have roommates. It's inevitable unless we are lucky enough to get that rare private room. Some of the roommates have never been in the hospital before or maybe just once or twice before. Some are scared. Some are hyper. Some are rude...staying up late at night with the television on or talking on the phone. Most of these roommates come in and are gone in a day or two. I could go one and on about roommates, but I will spare you.

Our stays with Jaycee in the hospital are different from these newbies. Us, we are veterans. Counting surgeries and illness admissions, we have been in well over 20 times. We know when to truly be scared because we have many, many experiences to draw from. We don't have to ask simple things like where to get towels or directions to the nearest hotel. We know our hospital well.

I can get a bad attitude in the hospital. I get jealous of people who are one time hospital admitters. I get upset when they call family and remark about their very sick child who isn't even on oxygen or an IV and who end up going home the next day. I appreciate their emotions and concerns but I'm jealous that their sick child is in a far different category from my sick child who is getting frequent albuterol treatments, frequent airway clearance therapy, on oxygen, on bi-pap at night, etc.

I get upset when people come in for one night in the hospital and complain about how they want to go home and how tired they are. Again, I understand what they are saying. But, when you have been in for days or weeks, then you understand what exhaustion from a hospital feels like. You really miss home and yearn to be in your own bed, use your own shower, and have your family together.

But then there are other veterans I come across in the hospital, the ones who have been here dozens of times too. They remind me that Jaycee isn't the only child in this area that is sick time and time again. I feel less alone when I hear their stories. But at the same time, I feel for them because I know some of what their life must be like. I respect these families who have to juggle illnesses, the daily care of their child on a "healthy" day, and all the regular daily life responsibilities. I learn from these people. I can talk to these people. Some of these veteran children and their families make our situation look good. They help me appreciate where I'm at in life and help me to not take for granted some of the things that are right with Jaycee's health.

So at the end of another week long hospital admission, I have to say that I'm still trying to keep my attitude in check. Maybe one day, I'll get it right.

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