The past few weeks, medically, Evie has been fine. We have, however, had a lot of other complications to her care. She lost medicaid. So, that being said, we lost the ability to pay for Home Health, medical supplies: including her feeding pump, extensions, bags, syringes, everything we physically need to feed her. Evie currently takes nothing by mouth that could #1 sustain her and #2 keep her blood sugar high enough to not go into a metabolic crisis. So, these things are not an option. The only way we have of feeding her, is through the tube. Medicaid also payed for a few of her meds.
So, I have been fighting like the Irish to get it back. I have written letters, I have filled out all kinds of paperwork, and made numerous phone calls. To the point of exhaustion. We still have to wait 90 days before we hear anything. So far, its been 3 weeks, and we still no answers and no medicaid.
So, here I am, looking at all these supplies, that, day by day are dwindling down. Our Problem: they are running out and it would cost us about $2,500, a month for the supplies she needs. Not to mention, this month in particular, we need syringes which total about $200, for a years supply, and a new pump which is $900. So, this month , we would need $3600. For everything. Even if we could somehow find $3600 this month we would be in the exact same boat next month.
So, good news, is that we got a new Med Supply company, AKA, a DME, who is giving us the supplies we need this month. Including a new pump and syringes. They are writing letters to Blue Cross, who won't pay for these items, and praying that they can prove medical necessity, to get them to cover them, until we hear back from Medicaid. As the pharmacist said, we are basically "playing Russian roulette". Hopefully BCBS will cover it, and if not, we will hopefully get medicaid back and then they will retroactively pay for what we have been given.
Worst case scenario, is that BCBS won't cover it, and we don't get medicaid back, and we owe thousands of dollars back to the DME company who, in good faith, gave us the supplies. This would obviously devastate our family financially. Because not only would we have to pay for supplies to cover what we have already received, but then we would have to come up with the money for future supplies too.
I wish I were just worried about what school my child can go to, and whether or not she is eating enough fruits and veggies. I wish that what we are going through today, didn't affect our tomorrow, but it does. I seriously need to know that we are going to be ok. That my baby girl is going to have the supplies she needs, and that our family isn't going to have to give up everything to have them.
I can tell myself all day long, that God has this under control, but, honestly, I don't believe it. Thankfully, the issue of not getting supplies has been solved. And surely, SURELY, she will get medicaid back based on medical need. If I act irrational, know that it probably isn't you, and it is just a hard situation that we have found ourselves in.
God knows our every thought, and knows what it feels like to go though every struggle that we experience. In my head, I know this, but turning something THIS big over to him, is just not something I can do yet. The worst feeling in the world is not knowing what is coming. Not knowing how my girl is going to get the things she needs to LIVE, not just clothes and shoes, but seriously expensive supplies, is scary for me. I wish I could just say "here it is, God. our finances, our house, our cars, our everything. Take it. I no longer worry about it". But I don't know how to do that. As soon as I say it, I take it back.