Medicines? Who needs Meds?

Well, having another issue lately with getting Evangeline the medicines she needs to function. We had run out of Amitriptaline yesterday, so I called the Dr had had it called it, supposedly. Later yesterday afternoon, I called the pharmacy, one of only 2 in town that could fill a compounded script, to see if it was ready, as it is across town, and I didn't want to drive over there just to see if it was ready. They, of course were still working on it. So last night we went without that med. Let me just say, that she has been having all kinds of stomach issues, and not having this med didn't help. She was awake till 12:30am, and just laid in my arms staring at me sometimes retching crying and having gas. So unusual. She smiled if I talked to her, but she was not feeling well at all, I could tell. We played the game to where I put her in bed, she cried for 10 min, I picked her up, rocked, walked, sang, talked, cuddled, etc, then put her back in bed, then she would cry again. For 3.5 hrs we did this. 9pm-12:30. Finally, I fell asleep in the chair holding her, and thats how she rested. Eventually she went to bed, but still woke up several times throughout the night.

There is no way I can tell if it was from a stomach bug or lack of meds, or both, but I know it didn't help.

So today, I go to pick up the script, assuming its ready. Guess what? It wasn't. The Dr never called it in. There was no script back there, nothing. I practically begged for 1 dose for the night, and they refused to give it to me, saying they had to compound it together, and the store was closing soon.

Not wanting another bad night for her (or me, for that matter,) I called Annessa to get advice, and help. She ended up calling the pharmacy, and low and behold, they had a bottle ready, just didn't want to dispense it to me without the refill script. They gave us the bottle on the promise that we would get the script taken care of first thing in the morning! I have no problems with that, I am just happy, to get the med in her! Tonight, she went to sleep at 9:30, per usual, and is happily sleeping, no retching, no crying, no gas.

Synergis: an RSV preventative shot

This shot has been a pain in the rear to try and get my child. They reccomend your child get this shot to prevent RSV, especially if they are premature, and have major health issues. Well, my child fits both bills. Born 2 mo early, and has LCHAD.

About 3 weeks ago. our Home Health Agency contacted me about receiving this shot. I had never heard of it, and frankly didn't really want her getting ANOTHER shot. It seems we are always giving her something. So, it apparently is a specialty shot that must be ordered through only a select group of pharmacies. This drug, without insurance, I found out, costs $2,500. For all the shots. It is a 5 mo long process, where she would receive 2 vials a month. Our insurance is going to cover most of that, Praise God. However, what it doesn't cover is $500. That is still quite a bit of money for a teacher, and a brand new 31 consultant/ preschool music teacher/ SAHM. I have called medicaid 5 times. 5 TIMES to see why they are not going to pick up the rest of the bill. And finally at 3:00 today, after telling them and being quite forceful, that I wanted answers. It is simply a ridiculous amount to pay for a shot, and quite frankly, it would be well worth medicaid to pick up the balance. If she didn't have the shot, and ended up with RSV, then hospital bills would go WAYYY over that amount anyways.

So, after finally getting in touch with someone, I found out that the reason they denyed the claim was because the specialty pharmacy that supposedly is one of only a few in the state that has the shot, does not accept medicaid as a insurance provider. That being said, I called everywhere today searching for a pharmacy that both carried the drug, and accepted medicaid. To no luck.

So, we may be out $500, or end up in the hospital. Well, obviously, I know which one is worse,The hospital. It just stinks to have to make that kind of decision. And to be put in that situation. So, I pray that God provides a way to let her get the shot that she needs, and let us find a provider for the shot that accepts medicaid. More phone calls are going to be made tomorrow.

I am tired. Tired of fighting with the system. Tired of having phone bills that are over my minutes because of these organizations that are supposed to help you, but treat you like dirt. Tired of waiting in line, for meds that aren't even there. Tired of Drs offices making mistakes that make my daughter's nights horrible.

It has been a long, long day. I am, however, grateful that the pharmacy gave us the prescription, just to get us through the night. Glad for the rest that I will be able to get tonight. And certainly glad for a nurse that is like family. That will stick up for Evie, when I am at the end of my rope. But most of all, glad for a God who isn't judgmental, and who listens when I complain about ordinary matters!