- Johns Hopkins will not accept Medicaid completely, not as a secondary insurance or at all. Because we have VA Medicaid for Annabelle, they will not follow us outside of the state for a diagnosis. Medicaid will follow us for treatment outside of VA but not to explore a diagnosis.
- That leaves us with United Healthcare. I still (and will always) continue to pay for a health insurance policy for Annabelle. I do not ever want to reach a point that she is denied medical care because of insurance reasons therefore I would prefer her to be covered by two insurance policies than reliant on only Medicaid. (That's working just swell for us now, huh? :insert sarcasm:) Because my employer does not provide me benefits, I pay for a private insurance policy that I purchased for myself, Madelynne and Annabelle. It's a Virginia specific policy but should travel and follow us. United Healthcare is pulling the exact same string as Medicaid, they will follow us outside of the state for treatment but not for a diagnosis.
My pediatrician called today to touch base. She was upset because I haven't spoken to her in a few weeks and I confessed that I was holding my breath to believe the NG Tube was fixing all our problems :( For the first few weeks after the tube was placed, Annabelle started doing wonderful. This weekend she began a downhill slide and it's only progressed faster since. Yesterday I received a call from the sitter that her behavior changed abruptly and it was worrying our sitter. Belle was playing and suddenly started to cry and wanted to be held. She didn't want to be moved or put down, she laid her head on her shoulder and clung tight completely emotionless. I immediately headed straight there and found Annabelle in the same condition. We brought her home and Annabelle found herself an early bedtime without much fight. She slept for over 12hrs. This morning Annabelle has remained the same way. Extremely quiet, she will not speak any longer. She doesn't want to play or be put down - she only wants to be held with her head on your shoulder and snuggled tightly. This isn't normal 2yo behavior. This isn't ok... and I had to acknowledge that.
I told Dr. Young how Annabelle has progressed over the last couple weeks and we both agreed that this temporary pause in her exploration for a diagnosis cannot continue - I need to pull myself back together and put my viking helmet back on because the NG Tube clearly did not solve all the problems (I need to stop lying to myself.. really). We discussed our options and the situation heavily about insurance companies and Hopkins Genetics. Dr. Young explained to me that if I am relying solely on United Healthcare to cover this genetic testing, that I might as well kiss the prayer goodbye - it's not going to happen. I need to figure out another strategy to get the testing done.
Here is what we've come up with:
- Our best chance at getting this testing covered is by having Medicaid cover it. In order to do that, we really need to move back to the state of VA.
- Dr. Young will see if she can find out what tests need to be ordered for genetics and SHE can order the labs. I can go somewhere to have the labwork done and then when the results come in, I take the results to a genetics counselor to finish the process.
- Dr. Young knows a genetics team and can pull some strings to have her seen, but the team is with the Health System (VCU). I didn't respond and she said, "I know hunny... we can slate that as Option C."
- When I was at CHKD, I asked and was informed they have a genetics team at The King's Daugther's Hospital. Albeit with a waiting list but I wonder if I moved the Hopkin's Consult information to CHKD and wanted to meet with them as an Emergency Second Opinion (with the persuasion of Dr. Young on the phone with them too of course), if I could get in sooner and begin the process there.
Agency Directed / Consumer Directed Home Health
This subject is plucking my nerves. I learned yesterday that I can continue to use our EDCD Waiver services of 42hr x week for Annabelle for basic home health care IN ADDITION to the EPSDT services of 16hr x day, 5day x week to cover the administration of her prescriptions, vitals, feeding pump and oral vs pump intakes. It's a lot of paperwork and strategic planning on who and how often we have all the nurses in and out of our home to help Annabelle (this is the exact moment in which AK reminds me, 'Hunny.. you need to be at home. You need to stay home with Annabelle, eliminate all the traffic, germs and strangers in our house and be with our baby girl, she needs her mommy'. That thought process remains in my mind constantly and the guilt is beyond overwhelming. But the reality is that today I need to buy a $500 prescription, and that isn't possible without us both having a job. It's a sad, frustrating reality and choice we have to make on behalf of our family... it's the world we live in). Anywho! Because the EPSDT Waiver is Agency Directed, I cannot hire the nursing staff that comes to our house, they do. But the process is that they post the job and I am notified when someone picks it up - it's been three weeks and no one has picked up Annabelle's care/job. That leaves us with zero nursing care and the responsibility on me to come home each day, every three hours to administer her feedings and vitals when she cannot make the oral intake. It's insanely frustrating and again, my hands are so tied that I have to stand in limbo and just hold my breath!
Please smile and wave when you see me on the news, I can't promise that my crazy won't lead me to this point one day. It's your baby - to an insurance company, Annabelle is a number and an expense they do not want to incur. In our lives, she is our Annabelle Grace and my baby girl. There isn't a mountain too high that I will not climb as her biggest advocate to help her fight.
I do want to say thank you. To every one of you that continue to pray, support and love our family without judgements. We don't always have great days, everything isn't always beautiful and smell like roses but we are real - we are living just like each and every one of you.. we're just trying to move about this life as gracefully as we possibly can with heads held as high as we can hold them on that day.
Thank you for loving our daughter, both our daughters.
Thank you for praying for my sanity and the strength of our family.
Thank you for the endless amounts of words of encouragement - I cannot begin to tell you how heartwarming and 'real' it is to read your words. This hell feels very alone and isolating most times. I feel like I am suffocating and no one knows it. Annabelle only see's our family in our little Chester home at 2am when she is suffering and expects mommy and daddy to help her and we cannot. But to know that at 2am when we are alone in our dark house, terrified with our baby girl and clueless as to what to do - the flood of security and humbleness that we feel knowing perfect strangers, family and friends are praying for us - sometimes is all that gets us thru those nights. I don't feel alone much anymore at all. In the darkest, most quiet nights I rest knowing Annabelle's name was spoken in someone's prayers that evening. I cannot pray enough for her on my own but the amount of warriors that you all are, supporting her will carry us thru this. I hope one day to post the most amazing news that we have a diagnosis. I long for that day and my heart beats so hard just thinking about it. Together we will make it happen, WITH Annabelle we will find a diagnosis. We just have to continue jumping thru the pathetic healthcare's hoops to get there.
Ashley, you need to have the doctors do a prior authorization for the prescriptions. I have to do that for Davis' medication once a year. It might take a few days, but it can be done. Medicaid will cover any and all co-pays for Annabelle's medication. I wished you had mentioned this to me before. Call me and I can help you with this. There is a light at the end of the tunnel. Call me.
ReplyDeleteAshley,
ReplyDeleteI write this to you with tears in my eyes. I know of the daily struggles that you speak of and I see them everyday. I may not be the parent of child yet, but someday I will and my hopes and prayers are for a better future where our sick children do not have to worry about denial of coverage and expensive prescriptions that cannot be covered. My prayers and thoughts are with you and your family this evening and every evening until I see a miracle happen to not only help you to get the coverage and assistance you need. But to find out the real reason behind your child being so sick. As a smart friend said to me "these are only ban-aids", we need a real fix to help these children. Not something that is temporary and works for a few weeks, long enough to give you hope and watch it disappear. I am praying! Thank you for being brave enough to share your story and the heart felt feelings that come along with it.