Fighting the Healthcare Battle ‘Being Rejected, No Financial Assistance, and Ready to Give Up’

Stethoscope wrapped around hundred dollar bills

Before you read, keep an open mind and understand the battle and know that this is not a complaint but an opportunity for something to change.

I have a great job as an IT Programmer/Web Reporter for a large corporation and we have insurance which I always assumed would cover everything. I have noticed the past few years that there are certain things that are not covered or less is being covered and I am having to pay more up front. I never really had to battle and beg for help on getting insurance to cover something until recently. If anyone who reads this has any ideas I am open to hearing them for sure!

My baby girl was one of several babies out there that suffered Chronic Ear Infections for months and months. Finally when she was 9 months old she was referred to an ENT Dr that put tubes in immediately, but that turned into more problems. She developed Staph from that surgery and became really sick on and off. They swore it wasn’t the tube that was infected and she got it elsewhere and would not refer us to Children’s and wanted to take care of it there through medicines. The medicines worked while she took them but once she went off of the antibiotic it came back. I knew something was wrong but I tried to trust the Doctor until I finally had enough. She had never ran a high fever before and her daycare called saying she had 104 fever! I immediately left work and called her pediatrician because I was afraid this could go septic. They got me in and said she looked fine and the ears were still infected and cultured it again. We started another antibiotic and given the max dose of Tylenol and sent home to watch it. My Gut just told me something was wrong and my mom was feeling the same way. The next day was Saturday and we headed straight to Childrens Hospital ER to see what options we had to get the staph infection cleared up and see their ENT specialist to try and get this baby girl some relief! It was the best thing I did! They cultured it and got us to see the ENT Dr that Monday. The culture came back as Staph and she needed those tubes out immediately! The day comes for surgery and as discussed the tubes will be replaced and the ear canal cleaned out and if the infection was bad enough and the adenoids were large then he said it would be in the best interest to take them out. I was devastated that my baby had to go through this but it had to be done.

After the surgery was done he came out and said she did great and that the infection came from the tubes, mostly her left, and her adenoids had to be removed. Sophie was in pain but came out of it well and I was so grateful. At the time you don’t think about money or insurance, only your child because that is the only thing that is important. Sophie did great with no problems for months and then we went to the follow-up appt where they did a full hearing evaluation. Everything from sights and sounds to using the machine to test the eardrum and vibrations. I noticed that there was never a response to her left side without a visual or the clown popping up in bright lights on her left side, so I was prepared for them to say something I just did not know what. They said they tested it 3 times and there was no activity on her left side. I just looked around for a bit and asked what exactly that meant.  Could tell they were choosing their words wisely. She said after serious infections hearing loss is a possibility but we never know if it is permanent until they are around 3 years of age.

I was like wait, wait, wait, so what do I do? Can I help her? What does this mean? They said that they would do another hearing test in 9 months to determine more. I could not believe what I was hearing.. 9 months!? My child is learning to talk and pronounce words and you want me to let her development be hindered by this? I don’t understand. She said, there are options if you want to be pro-active but it might be tough. I was like tough? She said, well do you have Medicaid? I said no we have insurance through my work, isn’t that better? She told me to hang on and she would be right back. She came back with a stack of papers to give to my pediatrician and for me to fill out for them and to give to my insurance. She was very nice and told me she would want to do the same as me and get help but to know that it could get pricey if my insurance did not cover it but said the developmental center would do a full evaluation and she has seen hearing return to children when caught before the age of 2.

I left thinking I just had to set up another appointment somewhere else and then as I was driving home it hit me. Did they just tell me that my child was deaf? No activity in her left ear?  I just could not understand and I also just did not want to and My mom was making excuses that maybe it was from the surgery or it was a fluke. But this is hearing! We hear things everyday no matter what. Even with an infection there is activity happening in your ear! I tried to just relax and get through the holidays and research what needed to be done while I sent the stuff to my pediatrician to work on and get her referred for testing. It is now February and this was back in November, so it has taken some time for sure.

I finally got information in the mail from the developmental center and they were needing more information faxed in about insurance etc since it is the new year so I faxed everything in last week.  I call to follow up to see what is going on and they said they needed me to sign a payment agreement to make sure I would pay so much at the time of the scheduled appointment and atleast half of the full bill the day of the appointment. I asked why it was being done like this because I have insurance and then the ball dropped! No where in my policy does it cover specialized therapies associated with hearing loss other than the audiology testing. It covered prescriptions and Psych evaluations per this was considered therapy and under the mental health policy. So I had to clearly understand and hear it for myself that I have no coverage to help my daughter regain her hearing through any therapy. Medicaid covers at 100% and any other government provided insurance listed under Medicaid is covered as well. I just did not understand and told them that I couldn’t believe it but I would do whatever it took and would pay. So I asked what the charges would be and she said she would fax me the information for the full day of evaluation per my pediatrician referred us for that because you want to make sure nothing is neurological and to make sure that everything is considered so they know how to help.

Anyways, she said 500.00 was due today to be put on the schedule and that since I had private insurance it was looking about 8-10months out! I could not believe this! Can I not get my child help any other way? 500.00! I have insurance that I pay for and it is useless in this matter so I have to be treated as if I don’t have insurance. I told her I was going to call her back because I wanted to call my insurance and get a full breakdown from them because something can’t be right.

I call my insurance and it was true. There was nothing covered under Developmental therapies or evaluations. Only Psych disorders and evaluations through certain doctors within the state. I asked what I was supposed to do and they said to ask for a payment plan and financial assistance. I got off the phone and wrote some things down.

Hearing Loss

Failed Testing

Referred by ENT Specialist, Audiologist, and Pediatrician

Medical Records prove the need for therapy

My daughter has not had any infection since the surgery but still has hearing loss

She is showing signs of withdraw in certain places with muffled noises

Im noticing speech difficulty

She turns her head so she can hear people talk on her right side

Some days she acts as if she can’t hear hardly at all

After writing everything down I had to realize that my daughter needed help with or without insurance and I had to figure out how. How could something that is medically necessary not be covered by all insurances? Then the Fax of the cost breakdown came through. I was worried it was going to be close to 1200.00 like her surgery that I had to pay for up front because it was the same surgery within the same year and they would not cover but only a percentage of it. It was more than I could have even imagined!!  Everything from MRI to several different types of hearing tests and behavioral testing to play therapy and occupational therapy and IQ-type testing and Speech testing came to a grand total of 8136.00. I know what you are thinking.. Isn’t this a lot of medical testing!? Yes it is but different medical codes due to it being at a developmental center and not a hospital it is considered under the mental health policy. Keep in mind this is part of the Children’s Hospital but it is their learning and development center. No matter what I said or did there was no changing to get insurance to pay. And this was just the beginning not the continued therapy once they find out what she needs. I was just sick! I work so hard and I need this so bad for her! I could never forgive myself if I didn’t try.

I decided to call other centers in the state to see if I could get anything cheaper and to my surprise I got rejected many times just for my child being under 3! And some will not help until your child is atleast 5!! I found one place that would take her but it would be for play therapy just to see how she is coping with having a hearing loss in one ear. I took it and its going to cost but it is only 300.00 and we have an appointment in a few weeks.

I took a few days to think about the other place because I know it is a specialized therapy and I know she needs it and I just had to figure out how I could pay for it.

We live in an apartment and I have been saving to build a house and just started the paperwork per I am finally approved! Nothing big, just 3 bedrooms 2 bath and I needed to make sure I could cover the cost of the interest and the little things here and there in case something went over budget and to have money to close on. I called the place today and paid the 500.00 and signed the papers that said I would pay 50% on the day of the appt. To my surprise they said they had an opening then end of March and I took it! I was thrilled that we got in and to know that my daughter now has a chance to get better and that she will get therapy is wonderful! I used the money however that was for our house. I know we need a better place to live but I am thankful that I did have this saved up or else I don’t know what I would have done. I will use my refund to help with the therapy costs after the evaluation and requested to be put on the payment plan and regardless I will take out a loan if I need to.

I don’t understand why it has to be this way and why I can’t get help when someone else can get the therapy for free but all I know is that sometimes you can’t fight the battle and I could have given up which is what most probably have done and will do but I didn’t. I am hoping for a miracle and for my daughter to regain her hearing and be able to cope with whatever outcome happens. As a mom, I will do whatever it takes for her.

Has anyone out there had to fight the healthcare battle and are there any options? Please share your story if you have!

proudsinglemomblog@gmail.com

Making My Own Baby Formula and Choosing to be Natural: Why I did it and How

“How a Physician Went From Criticizing My Homemade Formula to Promoting It”

(Recipe and Picture Description Below)

After having my daughter I was determined to breastfeed no matter what. However, after having a C-section it took my milk longer to come in and her weight had dropped to where they would not let us leave the hospital until they could see her eat and gain a few ounces. Being a new mom I did NOT want to use formula but I did not think I had any other options. They brought in a small syringe along with some formula to take home and told me to give this to her and make sure she was having at least 1 ounce every 4 hours a day. I know it sounds silly but with the hormones after birth going crazy in your body you feel like a failure because you have to resort to formula.

I was very upset and I could not understand why my milk was taking so long.  Finally! My milk came in and I was nursing it seemed every hour. I continued to give her a few ounces a day of the formula to try and get her weight up before her Doctor visit per that is what they had plastered in my head that I needed to do. After taking her to see the Doctor her weight was not where they thought it should and I was told that I should consider more formula and less Breast Milk. I immediately was in tears. “Why?” “I don’t understand!” I said. He told me I needed to be concerned about her weight and that she was getting enough. I left feeling hopeless like I had failed but I chose to continue breast feeding but did start to add some additional formula in with it.

Then, something was changing!! I started noticing her having tummy troubles, diarrhea, blisters on her bottom, and reflux! I took her multiple times to the Doctor over the next 2 months and he was constantly changing formula and stating it was my breast milk that I was continuing to feed her. I KNEW in my heart that was not right. I was healthy and she should be fine with just my milk, but I knew she needed something of substance while I tried to get my milk back and to help her get better. Keep in mind I had tried every brand out there and the most expensive and even a prescription and even soy milk. The Doctor wrote her up as stating she was allergic to soy and dairy and then told me to give her the prescribed liquid Zantac before feedings, use this steroid cream on her bottom for the blisters, as well as to stick with the alternative prescription formula he prescribed to try this time.

After this I desperately went to the Health Food Store and talked to one of the ladies that owned the store. I vaguely knew her from around town and from shopping there over the years and knew she had children and I was certain she knew of an alternate solution.  I explained my situation and she said to try just breasting feeding and giving her a probiotic and gave me a can of natural powdered goat milk. She showed me and explained to me what all was in these formulas and the starches and fillers etc. She said I could adjust and figure out my own formula as I figure out my daughter’s digestive system so I could add additional vitamins, etc. if I felt the need. I felt like I was being forced to poison my child but being told to use all the other formulas! My mind was even thinking about all of the commercials I see and going over what the Doctors say to use; brands like Enfamil and Similac! So how can something like this work? I immediately just blocked my thoughts out and got the probiotic and milk and gave that to her for a week and went back to the Doctor.

She had no diarrhea, had normal bowel movements, no blisters on her bottom and had not spit up or had reflux at all so I never needed the Zantac. He got all arrogant and said, “see I told you she was allergic to dairy and needed Zantac and now look at her!” I looked at him and said, “I never got that formula and I never got the Zantac nor used the cream for her rash.” He looked at me puzzled trying to figure out what happened this past week. I told him that I strictly breast fed, gave her goat milk and a probiotic and used just Vaseline on her bottom. He was puzzled at the fact that I did not listen and kept asking why I did this. I literally told him because I could tell something was wrong and all she needed was Vaseline on her bottom with powder and a natural way of eating has changed her completely. He refused to believe it and said if I stick to this I need to give her a DHA and iron because she will be anemic over time and Goat Milk is not the safe choice so he wanted to see her every week because it wouldn’t be long until she got sick again. I just let it be and we visited every week and then every other week for 2 months.

He checked her blood and she was not anemic and did not need iron; she showed signs of being completely healthy. Then he wanted to know what I did as far as making the formula and he wanted to see what all was in it. I told him how I was making the formula and that I made it every night. (Below is the recipe). He found everything online and also asked me to bring in the goat milk I use, the cereal I mix with, the vitamin, and probiotic so he can see for himself what my daughter was eating and scheduled us back in 2 weeks. At this time she was 5 months old. At this visit she was completely normal again and he said to me “making this is a lot of work compared to just scooping a formula and mixing with water.” I said “Well raising a child shouldn’t be about what is always convenient should it? The convenient way was making her sick and we do not really know why but it did and you can’t deny it.” He looked and said, “ This formula and the way you make it has enough DHA, vitamins, and more nutrition than what is in the formula I was having you use. I was completely against you even trying this and using this but I researched this up and down and then advised a close patient and her baby to give it a try per their baby had sever digestive issues with formula as well and within 2 weeks the child was completely fine and no allergies or rash. This concerns me and makes me more concerned with what I even eat these days and the choices I make.” I said, “Keep the formula I use and share it because there is nothing worse as a mom than feeling like you can’t help your child eat. I knew she was not allergic and needed an alternative option to getting her nutrition.” He nodded his head and said,  “a mothers intuition is best and I am glad you realized this and I am glad to know I have an alternate option as well and I hope you don’t mind that I have this and share it?” I told him to keep it and give to whomever needs it and they can always adjust to how they want it but at least they know exactly what is going into their baby’s body.

Months later my child is 19 months old and continues with the same formula and loves it. I use it to make all kinds of stuff and it works just like any milk product. She has yogurt and other dairy products and has even been introduced to non-homogenized whole milk and loves it. I still stick with the Goat Milk because of the nutritional value but it is good to know that she is not allergic to dairy and does not have food allergies like he had thought. I refused to give up when I knew something was not right.

At her last check-up her Doctor said he shared it with over 100 patients this past year and just wanted me to know that.

My Advice from what I learned is to give your body time to adjust to having a baby and your milk will come in. Sometimes there needs to be an alternative to breast milk due to illness of the mother or the baby and there is a natural way. My child is extremely smart and developed better than ever. As a Doctor they give you the scare approach as to what your child needs and when. Yes they need to at times because it is so important that your baby gets what they need, but as a mom, you know what your baby needs. This is in no way biased to any other mother’s options that they choose or have chosen. This is just my personal story and if you have a baby with digestive issues then here is an alternative option to try. I hope the below recipe helps you like it has helped me.

For any questions on how I did it, and alternative product options please email me and I will be happy to help you in any way I can!  proudsinglemomblog@gmail.com

Recipe   (Mix with your choice of Water)

Infant- 6mo Recipe

36 Ounces starting out then 20 Ounces (I used a protein shake container)

5 Tablespoons Goat Milk

3 full drops of vitamin

½ tsp of probiotic

6mo-9mo Recipe

20 Ounces

5 Tablespoons Goat Milk

3 full drops of vitamin

½ tsp of probiotic

1-2 Tablespoon Cereal

9mo+ Recipe

20 Ounces

5-6 Tablespoons Goat Milk

3 full drops of vitamin

½ tsp of probiotic

2-3 Tablespoon Cereal or Oatmeal

Natural Formula

The “P” word “Pre-Potty lingo”

I am sure you are all wondering about the “P” word. I can’t stand the P word and I have been looking for every other option possible to call it something else, and the bottom line is just this: that it is just “Shit” The end. I hate the word poop and I hate the slang of Shit.. but there is just no classy term for such a disgusting mess. We have learned “pee pee” and that is fine but I have not elaborated on the other that comes in the diaper other than we agree on “shooo” and “nasty”.  Until… it happened. We come home this week and she goes to squat, then stands and says “poop”…. I just kinda glanced over and said huh? And she runs over and says “poop”, “poop” giggle-giggle on her end and I just had this mortified look on my face thinking where did she hear this because they haven’t started potty training at her baby school (I’m not fond of the word daycare).  So I bend down and give that classy whiff to see if it is just a word or if she knows. “Oh heavens, you know what poop is” I said. Now some moms get all happy that their kid knows pee-pee and poop but I am looking into the future of being at a nice restaurant, or Church, or a wedding and my kid yelling “Poop! I go Poop!” or the moment when she has to wait on me in the bathroom and start announcing to everyone in the stall that “mommy go poop! Yay!”… These are just not the things I am ready for. I know they are coming but I like to think of alternative ways of handling situations before they happen but having a kid.. yea, you don’t get to prepare for much of anything. So anyways, she took my finger to the bedroom to change her as she said poop about 10 times and I agreed that yes it was poop and good job for telling mommy. I am really proud that she knows the word and that they are making them aware at her baby-school, but this is just a process that I think I am going to have to mentally prepare for. Surely I am not the only mother out there that is concerned about the words that are to come out of their kids mouth and never knowing when or what will happen. Maybe I am a little crazy? Maybe I need a little Xanax? I don’t know, but I am sure one day I will look back and laugh but right now it looks as though what once was just the “p” word is now the word poop and is in our vocabulary. Ugh! To be continued…

Innocent Words of a Child

The holidays have passed and Sophie just hit the milestone of 19 months! It is so amazing to look back and see pictures from today verses a year ago. I am so grateful for each passing day and think of how many adventures we have had in such a short amount of time. It seems as if she has always been a part of me because I can’t even remember hardly the days before I had her. Even on the craziest days I still look at her while she is sleeping and I still have tears that I catch running down my cheek because I am just so thankful to have someone in my life that has taught me what true love is all about. To some that may sound cheesy or maybe even a thoughtless rambling to start off a conversation but there is meaning behind these tears.

My biggest fear has always been the day that she asks about her Dad or a dad or her situation and why it is different. I know these days everyone has a unique situation but that doesn’t make it any easier as a parent. I always imagined it being while she was in Kindergarten figuring out about how other kids have a Dad and she then realizes that something is missing and comes home asking why I have a dad and she has a Grandpa but why doesn’t she have a daddy like everyone else. Now before anyone starts judging you should know that it is a blessing to not have her Dad in the picture because he doesn’t want to be and I do not believe in forcing parenting upon anyone and forcing them to be a parent and resenting the situation and the child. Then I would have another issue at hand of explaining why she isn’t wanted or feels wanted by her Dad; Either way there is no winning but I want her to always feel wanted and loved.

Here I am waiting and worried about Kindergarten when the moment happened while she is 19 months old. I am writing this while it is completely fresh per it happened just recently and I am still hurting from the pain of the innocent words out of her mouth. I have noticed that over the holidays she was letting the Daddy word slip out while referring to my Dad and we would have to remind her it was “Papa” and she would be fine and we would pretend nothing happened and go on. However, nobody really pretended anything, we just all kept it to ourselves. It hurt to hear her call him that because I know she was hearing it and understanding it from being at daycare (aka baby-school). I finally broke down to my mom and she said not to worry about it because she was just trying to use her words. I knew she was just saying that to make me feel better but I pretended it worked. I haven’t heard anything out of her since, regarding the “Daddy” word lately so I thought maybe it was a fluke for the time being.

Recently we had a playdate with a friend of mine and her little one. I was excited to go and have a playdate because it had been so long and we were to exchange gifts with the kids. They are close in age so it is always very cute to see them play when we get together. I am always concerned if men are around and wasn’t sure if her husband was going to be around because I never know how Sophie will react. Normally she screams and if they have a beard it’s over because she will scream out of complete fear. However, none of the kind was there so we were having a great time. Then it happened… Her husband came through the door and the little one yelled Daddy!! Then Sophie turned towards him and just started gleaming with bright eyes and was talking her jibberish and laughing at any attention he gave her. I was calling her name but she didn’t hear me and was following him as he went down the hall saying “pease , pease?”. I wasn’t sure why she was saying please, so I had her come back down to me and she just looked confused and asked in the sweetest voice, “ Daddy Pease”. I said, honey I am Mommy (Trying to change the subject). She said “no no, Daddy Pease, Pease Daddy.” Then she grabbed a book and started heading down the hall and I went to get her and said “ Its ok I will read the book”, She then turned and looked and said “ Daddy no book?” “Daddy Pease, Pease?” I then became sick and had a lump so hard in my throat I couldn’t swallow or speak and just held her and walked her into the living room. My friend was in tears because she knew I was holding back and could only imagine what I was thinking. I had tears roll down my face but I was holding so many tears back I could feel a massive migraine coming and I couldn’t see for the flooding of tears being held in my eyes. I sat her down and finally swallowed where I could talk and she kept pointing at my eyes saying “eyes, eyes mommy”. I said yes, these are my eyes and where are yours? And she pointed to her eyes and then she pointed to her nose and I asked where her belly was and we tickled it and got her laughing. I finally said, “Let mommy read you the book ok?” and she said “K, tank ooo”. I read her the book as best as I could without choking and thinking anymore about it but in my mind I felt like a failure. My friend and I talked briefly about it just enough to put it out there but no details because I think we would have just cried until we were sick. The innocence of any child I think could bring anyone to tears.

As we left all I could think about was that one thing and the whole situation playing out in my head. I know every parent has their own battles with their children and their own pain but when you are going through your own pain you don’t really see anything else but your own. Right now I just tell myself that I am grateful for what we do have and that I am doing the best I know how. As we came home I just loved on her and made dinner and wanted to hold her as much as I could but she was just so tired so I laid her down and she was out pretty quick. I came in the living room and just cried because I had too. I had so much I had held in I just bawled. I looked for a movie to take my mind off of everything, even tried watching a scary movie and then I noticed something. Both movies had the same similar plot. One was a television movie where the mom was protecting her daughter from becoming victimized in college and the other was a horror film that ended in knowing that the mom had victimized herself to prevent suffering of her daughter. You may be trying to figure out what I am getting to and it is just this….We all have battles and have choices on how we handle them. How do we know what is right? We don’t.

My mom used to always tell me anytime I was punished or when I was hurting that she could feel it and I would understand when I became a parent. I never knew what she meant until I became a parent, and the older your child gets it does not get easier, it only gets harder because they can tell you what they want and what hurts.

After I finished crying I went in to Sophie’s room and she was sleeping so peacefully, I put my hand in her hand and just prayed for peace, love, and guidance.  I prayed that when she wake and these words came out of her mouth again that I would know the right answer but that I wouldn’t resort to lying even though she is so young. I went back into the living room and started going through my phone when I heard a whimper of her waking up. I am sure she heard me from being in there but I was just happy to see her awake and hug her since I had been crying all evening. She looked at me half awake and said “mommy”, I said yes baby, you have a bad dream? She didn’t say anything just laid her head on my shoulders so I knew she was sleepy. I laid her back down and she stood up and said “Daddy, Daddy, no no no?” I said Baby, I’m mommy but your Daddy is up there and his name is Jesus, as I pointed to the ceiling. I said “Sophie’s Daddy is in a place called Heaven and he watches over you and Mommy and protects us and makes us happy (as I tickled her belly)”. She giggled and pointed up and said “Daddy” and I said yes and I am mommy and I love you so very much. I know it was a lot for her to take in but it was not a lie and it was the answer I had prayed for. She laid down and as I was about to walk out I said “Night Night Love you” and she stood up and said “Mommy, wuv ooo, K (K comes after everything these days). I just looked at her and then gave her a kiss on the cheek and said “love you so much night night.”

Where an adventure comes a battle may follow. We don’t always know the right answers but there is someone who does. Being a mom has taught me to be humble in a lot of ways and to rely on God when times get tough. Too many times people give advice based on instinct or their own experiences and thoughts. That is great in some cases, but in this case my advice is to let you know that you are not alone in any situation and call upon God to help you.

9” Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”  Joshua 1:9 (NIV)