More happy days, more insurance frustrations

The thought of settling with the diagnosis of ‘we have no diagnosis’ has been difficult the last couple weeks. Annabelle is always showing us more signs for whatever plagues her little body. I want so badly to love and treat her like a normal little girl but it’s difficult. We are trying though, and I am happy to say that lately, we’ve had more stretches of better days than bad days than we’ve had in a long time. This makes us so grateful, and fearful at the same time. We pray it will last, and we fear trouble lies ahead. 

We’ve had more labwork repeated a few weeks ago when Annabelle’s wasn’t feeling well – it showed her amnio acid levels were again off the charts, and her ammonia levels were raised, but not dangerously high. These are our usual results.. abnormal is our new normal.

The newest concern is what is happening within her tummy and what we’re seeing during feedings. A few weeks ago I began seeing sediment or something, inside Annabelle’s feeding bags.. I was immediately concerned. Weve never seen anything like this before in her tubing or bags. A few days later it began to get worse – to the point it is right now. Within hours of hooking Annabelle to a feed, this green pore-like matter fills her feeding bags and tubing from her extension connected to her tummy all the way to the feeding bag itself. We have done everything we can think to eliminate the possibility it isn’t coming from Annabelle. We have switched from tap to only bottled, purified water, we only use brand new, packaged tubing and feeding supply (although this has really started to cost us since we are now using above what insurance allows), we have opened brand new cans of formula, water temperature, everything. Inside the home, outside the home, day – night, zero food in Annabelle’s diet or a usual diet, it’s always there. It’s disgusting.

While Annabelle has been having many better days than rough days, I’ve unfortunately noticed that when she doesn’t do well – it’s extremely fast. Literally within minutes sometimes. I used to be able to recognize if it were going to be a bad couple days, or start gauging if she were heading downhill, but I cant anymore. If she’s going to take a turn for the worst, it comes on faster now than ever.

Last week was hard on Annabelle. For a few days she had a tough time. Her nights are beginning to get very restless again, she’s been waking crying, screaming in pain and struggling to get back to sleep. Last week I noticed she peed thru her diaper (a constant battle), I changed her and she remained asleep. I checked on her a few hours later, and she again had peed thru her diaper, another change (diaper, clothes, bedding etc) and still, she remained asleep. This repeated again and when she wasn’t waking the third time I began to get nervous.. It took entirely too long to wake Annabelle up. My heart was in my throat. She struggled to stay awake most of the day, she spent her entire day laying around and pleading that I curl next to her and snuggle.

These are the times I am most grateful to have our nurse with us. She can monitor Annabelle’s BP that remained extremely low, and continue monitoring her as I do what I know to do best, just be mommy and not a nurse. It’s the best feeling in the world. Annabelle is getting the care and loving she needs and I know in the very best of hands, finally. The day was long and the next day continued the same way. The last several days since, Annabelle has done very well but continues to have spells where she hits a wall of sheer exhaustion and doesn’t walk or move around, she just lays or wants to be held. We’ve been doing her feeds with less volume but the same timing around the clock. I am wondering if she needs to be on a more continuous feed to avoid these spells of becoming so lethargic. I just don’t know what brings them on to weigh what I need to do to help her avoid them.

Insurance has been my biggest battle lately. Insurance isn’t covering any nutritional formulas and very little supplies suddenly. I am spending hours upon hours and hours negotiating and PLEADING for coverage without any headway. Here's my favorite converation:

Idiot Insurance Guy Representing A Company That Believes They Are Doctors And Can Decide What is Necessary For My Daughter Despite An MDs Orders: Mrs. Bishop, your policy clearly states that it does not cover nutritional formulas, I am trying to help you understand that.

Me: I am trying to help you understand that this 'formula' is a medical necessity and absolutely should be covered, I don't know how it isn't!

Idiot: It's formula mam, an insurance is for medical purposes - we don't cover band-aids, diapers, we don't cover a baby formula. 

Me: THIS ISNT A FORMULA! This is a MEDICAL FOOD that is only given thru the tube hanging out of my kids stomach.

Idiot: That's a matter of how the nutrition is given, that is entirely separate from a formula itself. 

Me: One can costs hundreds of dollars and can only be ordered with a prescription, how can you say 'its just a formula'. 

Idiot: You and I have both discussed this as a nutritional formula Mrs. Bishop. Formula is for nutrition, but a formula is not medically necessary and covered.

Me: This formula is the only thing saving my daughters life!

Idiot: You're right Mrs. Bishop, nutrition is one of the biggest keys to life, whether it be by a formula you drink, thru a tube, thru fruits and veggies etc. Nutrition is absolutely key to surviving. 

Me: My child cannot eat food like you and I. She cannot eat fruits, veggies, meats etc to sustain - her life depends on this formula! It's medically vital she has this formula to survive. 

Idiot: We as your insurance company are not denying you to provide your child with the nutrition she needs, we are simply not able to cover it under your policy, it's not part of your coverage. 

Me: No one can afford the monumental costs of these formulas. I cannot afford the costs of these, without coverage, I cannot feed my child - prescription or not - I can't afford it! 

Idiot: Mrs. Bishop, would you like me to send you a copy of your policy, maybe that can explain things better. 

Medical Supplies and Formula Coverage for the month of October only:

Formula coverage only for the month of January:

And the worst phone call of all - the phone call that brought me to my knees in tears:

The Home Health Agency that employs our nurse informed me last week that I have an outstanding bill of $9,870 that needs to be resolved before they can allow our nurse to continue working for us. I wasn’t aware that insurance wasn’t covering the nursing care! Apparently our primary insurance policy is only willing to cover 30% but Medicaid will not pickup any of the difference. Our nurse works under a Medicaid Waiver (EPSDT), therefore I have always assumed this is a Medicaid covered service. Never once was a cost discussed when I hired our nurse, nor have I ever received a bill until now. I cannot live without our nurse – she has been the ONLY lifesaver and blessing to our family since Dr. Young. We simply cannot continue without her. I also cannot work without the nurse in our home. There is no one that can care for Annabelle beside myself, AK and our nurse. We’re in such a terrible place and I pray with everything the insurance battles are resolved soon. My last conversation was made crystal clear “I don’t know what to do to resolve this, I have never been informed about any outstanding bills until now, but there are two things that I do know for certain. 1) Annabelle cannot live without this nurse, she is a blessing in our home and Annabelle’s care fully depends on her being with us. 2) I do not have $10,000 to give you. So please tell me what I need to do on my part to resolve this issue, because I cannot fix this on my own.”

I've said it before and i'll say it again - you can be a millionaire and not be able to afford the costs associated with a sick child. We have two insurance policies and make great money - and it's not even a fraction of enough to provide the proper care Annabelle demands. The poor child didn't ask for a broken little body and she sure as hell shouldn't be denied the help she needs because of financial reasons. 

Side Note: Please don't allow this post to carry someone on a political / health insurance rant. The changes in the last health care have rearranged our coverage so substantially it has killed our family more than I ever believed to be possible. Moving to all the new plans and coverages that are mandated, Annabelle STILL does not receive the care she needs - Enteral Formulas are still not covered. Prescriptions are still not covered. The expenses haven't been relieved, our premiums have only doubled and the bills have piled faster. So please, do not reach out to me on an insurance educational standpoint. We have sadly, done plenty research on our own.

Annabelle’s tummy is infected again. We have a steroid cream that we are allowed to use for only two weeks max and then have to stop using for at least a week to give her skin a break. Within days we stopped using it this last time, her stoma produced two separate trouble spots of granulation tissue. The area around her tube is so red and sensitive. I keep wondering if this is why she’s been waking at night crying in pain. In a sad way, I really hope that’s the case – because I know it can be resolved. The very worst though, is that it is going to require another trip to the surgeons office for another silver nitrate treatment to have the tissue burnt off her stomach. God it’s the worst darn thing ever.. I hate this most for Annabelle – of all the terrible things this kid has had to endure, this  is undoubtedly the worst

Today is supossed to be a beautiful day. Annabelle woke up a few times during the night crying but overall has had a good morning. She's pleading to go outside and we're going yo do just that. We're not looking forward to the upcoming snow, we need more 70 degree days of sunshine. Our entire family needs fresh air and today were on a mission to find it. 

Outdoors we are, side walk chaulk, bubbles and a sliding board. 

Happy Sunday. A Blessed Sunday.