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At Their Mercy

Last Friday, I was driving to my next destination on a usual day of errands when my phone rang. I'd already dropped Christian off at therapy with his nurse, ran to kroger to pick up half of what I needed since they were out of the other half, and planned when and where I would go to the next Kroger to get the rest of my groceries. I picked Christian up from therapy and headed to yet another grocery store with the specific things I needed for Christian' s diet. My mind and body were exhausted. It WAS Friday after all and it had been a long week.

Chris had found out earlier in the week that he lost a large bonus at work that we were counting on, the boys had been battling a nagging cold all week, not sleeping well. We were all just over it. 

I answered my phone and it was Christian's nursing company on the other end. To my surprise, they had just received news that Christian's insurance had decided that he didn't need all of the nursing hours that he had, the amount he'd had his entire life. I was floored. My lawyer mind started going a million different places, and questions started falling out of my mouth. The nursing company couldn't tell me much. They were actually surprised that I hadn't heard about it yet. The best part was that Christian's nursing services were going to drop down to almost half of what he was currently six days. 

So, after several more hours of errands and dragging the boys all over town, we finally got home. I make all of Christian' s food, and he was almost out, so I had gotten groceries to blend him up some more. The nurse and I started on that while I made some phone calls to the insurance company. I got three different folks on the line and got three different responses to my questions, of course.

There just wasn't much anyone could tell me, or much for me to do. So, here I am, starting to go through yet another insurance appeal. An appeal is basically telling the insurance company that you disagree with their decision and why they are wrong.

A very kind friend offered to help me write the appeal since I haven't done it enough to really hone the skill. The craziest part of it all was the time crunch I was on. Christian stood to lose his nursing hours in 6 days. Generally, you have 30 days to file an appeal, and really, I did have 30 days, but if I didn't get an appeal filed and also convince the insurance company that this was important enough that they needed to expedite their decision, then the nursing hours would automatically drop that following Saturday. #MissionImpossible

Nursing care is so important for Christian's well being. Christian qualifies for nursing care because of his feeding tube and only because of his feeding tube. Blessings in disguise, right? You can't sit him down at lunch time and put a pb&j in front of him and expect him to chow down. He can't. Physically and mentally, he can't, and he won't. Feeding aversions and challenges are such a complex thing that I won't even try to explain it all here, Maybe I'll leave that for another blog post, but suffice it to say for now, that you can't "make" Christian eat. You can't "Make" anyone eat. And Christian would literally starve to the detriment of his health and possibly death without his feeding tube at this time. The saying "They'll eat when they're hungry," simply doesn't apply to Christian.

Having a nurse ensures that Christian gets to eat wherever he's at. His teachers at school aren't trained to use a feeding tube. His teacher now, who is so intelligent when it comes to teaching blind kids, has no clue about how to use Christian's feeding tube. So, without someone able to feed Christian at school, well, that leads to the obvious: Christian can't go to school. Christian's nurse accompanying him to school means that Christian gets to go to school like everyone else.

Christian and his button! <3

Christian's nurse also ensures that some of the weight is lifted from my shoulders. I know I speak about Christian as a very typical kid, and in so many ways he is. But the reality is that Christian is medically complex. I had to list out his diagnoses for this appeal, and also had to get a letter from his pediatrician about the nursing care. His pediatrician sent with that a list of the diagnoses on file at that office for Christian. There were about 15 total diagnoses. Each one of those diagnoses takes a a specialist, a plan of care, treatment, and management. For example, Christian's cleft takes a craniofacial plastic surgeon specialist. It requires a plan of how to go about doing each surgery, coordination of care with us and with other specialists that might be involved, like ENT, and what surgeries will be done and which will be avoided. It takes actual surgery, being the treatment, and management, meaning lots of follow up appointments, planning, and just generally keeping the ball moving and Christian's care in that specific area going. Now multiply that by 15.

Christian is, as medical terms go, total care. He can't go to the bathroom without help. He can't feed himself. He can't even begin to bathe himself. He can help dress himself, but can't even realistically pull the appropriate clothes out of a drawer, or button up a shirt. He can't put his own socks on. He can't turn a shirt to the front to slip it on the correct way. He can't go anywhere outside of our home without someone guiding him. He can't walk out our front door without someone holding his hand to help him down the stairs. And the list could go on and on and on about all the things Christian can't do. Christian can do so many things, but self care is one that he simply cannot.

Nursing ensures that Christian always has that assistance that he needs. I can't be everywhere all the time. Chandler needs me sometimes too. I have to work. I have to clean. I have to go to my own doctor's appointments. I can't leave Christian with a sitter, or with a friend, or even with my own parents, for longer than it takes for him to get hungry. He has to eat, and he has to be with someone who knows how to feed him. I mean, I do need to eat and bathe occasionally myself, too. (haha!) But any special needs parent can attest that when you have a total care child, it isn't always practical or doable to actually shower daily or eat regularly. Heck, that's not even doable when you just have small children! #IDidn'tEatDinnerLastNight #TrueStory

The difference is that small children begin to grow and become more independent and so that stage doesn't last for long. But Christian is still total care at almost six years old. His self care skills will get better, lots better, but it will be a long time from now.

Our nurses are in our home to take care of Christian, but they indirectly ensure that I have my sanity and mental and physical health in tact, as well.

Losing nursing care, even part of it, would be a huge blow to our family. Everyone asks how I do what I do, and I always say, "I have nurses!" They shoulder so much of the weight for me that it's incredible. And we have incredible nurses who make sure Christian is always clean, fed, and taken care of. They love him, and it shows in their care for him. We have wonderful nurses who are invested in their relationship with our family and who lift my burden by being able to care for Christian when I can't or need help.

It hurts me so much to constantly have to be fighting someone for what Christian needs. I am so tired of having to prove to someone that Christian needs the things he needs. We aren't faking his disability. I wish we could say he was fine and didn't need nursing care or a feeding tube. But we can't, obviously.

I am so tired of being at the mercy of people whose job it is to sit behind a desk and shuffle through paperwork that paints actual human beings as mere words on paper, taking away their humanity. It's not the person's fault. They are just doing their job. It's the nature of the beast, I suppose. But at the end of the day, after they have cut someone's nursing hours, or coverage of medications, or refused to cover a medical procedure, they go home and their life is the same as before they used that rubber stamp. But for us, that simple rubber stamp that they don't even give a second thought to, it is life changing for people like us us. Losing nursing care would literally be life changing for us. It would rock our world. And yet, here we are, at their mercy, and praying that the paperwork I sent them will convince them that the last bit of paperwork they saw was wrong, and that the human being behind that paperwork is a real human with real needs, who really needs what the paper says he needs.

So, the battle continues with this insurance appeal. The appeal was submitted last week and so now we just wait. They did agree to continue our nursing care hours during the appeal process, called continuation of benefits. i.e. They agreed to allow our nursing benefits to continue while they make a decision on the appeal. If they don't agree to give us an expedited appeal, then the decision can take up to 90 days. If they do agree to one, they will make a decision in 3 days. So, when I know more, you will know more!

Please pray for our family during this appeal process! We are facing a giant, so to speak, and I am praying that we win this appeal. If not, I am not sure what we will do. I know we will figure it out, and I know that God is with us through this whole process. This is a mountain we will climb and get across, and when we get to the top, we will be thankful we climbed it, because otherwise we would miss the breathtaking views.

If you are interested to know how a tube feeding is done, I posted a video demonstrating how Christian gets a tube feeding that you can watch here:


  1. Praying and trusting that the Lord continues to provide for Christian and family! If the insurance falls through, I trust the Lord will provide even better care for you all! xo

  2. Sending love & strong prayers for you all!!

  3. be praying for your family this is so wrong if he needs the care give it to him please someone help the family

  4. I am so sorry to hear this. I am an LPN and I work in group homes with individuals with gtubes. The new standard here is that the staff is being trained to do them and the nurses are being phased out. It's scary, I wish you all the best!

  5. I have been following your posts on Facebook for a long time. With all Christian and your family has had to endure health wise with him, you are such a strong person. Christian is such a special young man! Praying the appeal goes in your favor! Sending love to your family! ❤

  6. You can ask to see the credentials of the Doctor that made that decision. I say this because I had needed a procedure that was denied. And was told that most insurance companies just have people sitting at a desk following questions to decide. They are not Doctor's!

  7. Oh Lacey, I am so sorry to hear that you and your family are having to deal with this. Prayers for a good outcome.

  8. Fighting the fight every day with you. I won't even put it into words because you obviously know - we can't get what we need without begging, and then IF it comes we know it can be ripped out from under us any minute. I'll leave it at that, but wanted to tell you I understand and you're not alone.

  9. Keeping your family in my thoughts and prayers. Sending positive thoughts and prayers from Iowa

  10. Praying for Christian, God doesn't close one door without opening another... God knows your baby boys needs..God Bless

  11. Leave it to the insurance companies to mess with a child's needs. I pray all works out for you Lacey and of course Christian.

  12. Sending my prayers and positive thoughts and energy to you all.

  13. This is one of the most frustrating things. It's as if they have you and know they know it. They forget these are real people , not just names and numbers.

  14. Ok I'm gonna step out here... And play devil's advocate. Nothing personal....
    I work in a pediatric surgeons office. Although your Christian is indeed total need child. I. In my office an the one to prep the paper work for the home health care and get all forms signed and faxed to all the right places.
    Bear with me....
    Why is it people with special needs children expect the world to care for them? There is nothing the nurse is doing that you and your husband and grandparents aren't capable of doing. The school nurse is capable of tube feedings, many do here where I live. Six years, this is not new to you. I can see the nurse in the beginning and as therapy changes there to show you teach you and assist through surgical times.
    But this child is yours. You chose this pregnancy. No, you did not want or ask for a special needs child.
    I feel for you especially with all the difficulties you face.
    I see so many who take advantage of "the system".
    I can see having respite care. Some one who spells you while you take time for yourself.
    It is admirable that you make his food but actually not necessary. That is you choice. Yes we all want the very best ingredients etc. We all do. We all would want the same. But we don't because we don't have the time not money. Why is it everyone's responsibility to care for these/your children.
    There is one lady who takes full advantage of the nursing care. To the point she expects the nurse to comb his hair and brush his teeth.....sorry but thats a mom's job. She goes shopping plays bingo watches TV... Does nothing for the child. Another child has been coming to the practice for years we have never seen or talked to the mom. Home health nurse only.
    I admire you for going to school many can not....because they are caring for their small children. I didn't make it back to school until I was 42...I was caring for my children.

    Not you

    But why as a society is this okay, for us to expect government, insurance companies to pay for our children parents etc.
    Past generations took care of their own....
    It is big business...
    Don't even get me started on Medicaid/Medicare for illegals. One family lives in Mexico but comes across the border for Surgery maintains an address in Texas just for this. Fraud...yet they get away with it. WIC provides formula for this baby for a year and a half....
    I'm tore between empathy legality.
    Nothing against you at all.
    Just something's I have a hard time lining these different situations in head...HEAD
    My heart is right there with you.
    Thanks for letting rant.

  15. I am praying for you Lacey because clearly this is a need for Christian and he deserves it. You are such an amazing Mother and like you said you also have Chandler who needs you.

  16. My heartfelt prayers are daily with you and your precious family. God bless, He will see you through!!

  17. I feel you.. I struggle with so many of the same things you are.. only add about 13 more years to it.... It unfortunately does not get easier. Sending love and blessings.

  18. Lacey I hate this for your family. I soon will be going through the appeal process. I have a rare kidney disease called Cystinuria. It makes it to where I produce massive kidney stones. Here about two weeks ago, I was hit with a severe pain in my right side. Fast forward almost a week and I ended up in Nashville for the ER. I had a 1 inch by 1/2 inch kidney stone blocking my right kidney. My urologist had his nurse call me the very next day to schedule surgery because I was so ill. It was an emergency surgery to be scheduled. The thing is the surgery requires just more than my doctor so they had to schedule it around an interventional radiologist schedule. They were able to get me scheduled Friday (3 days after my ER visit). I get there to register to be told "your insurance is out of network with our hospital." Say what? I've been coming here for 10 years and now suddenly you don't accept my insurance? They originally told me I would have to pay $5,000 upfront. I began to cry. I was so close to getting surgery I desperately needed to be told "you're not in network." Apparently, this occurred in August of last year but my insurance didn't notify me and my doctors office didn't have a list put on the wall until January which was after my open enrollment date back in October. The hospital did my surgery anyways thank goodness. But now, I have to appeal to show it was medically necessary. Maybe acute renal failure will be enough to convince them? I don't know really. To make it even worse, the first ER visit I had that Saturday to be told I just had a bad UTI they rejected to pay that bill... So, here I go to appeal. I hate this for you, I really do. It sucks having to depend on an insurance company to determine what's medically necessary for you in your case your child, all based on their statistics. I am praying for you as I know this is a difficult situation. I pray that everything goes smoothly as well.

  19. I just want to thank you for sharing your information. If you need Private Duty Nurses then contact us


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