We had a decent stretch of time where all the things with Ella were really good. She switched classes at school and has an amazing teacher, we had consistent nursing five days a week, the school district and I were getting along well, and her medications were keeping her stable.

In the last month, things have become challenging. I was not foolish enough to think this day wouldn’t come, I was just hoping it would be a little further away. Mama Bear was in hibernation and has been woken to come out and fight.

Thankfully school is still going well. Ella’s teacher and therapists are so sweet and do all they can to maximize their time with her. Her days are packed with therapies and activities to keep her busy and engaged. She is usually exhausted when she gets home which tells me she worked hard when she needed to. We have seen some great improvements at home as well. I am amazed by her leg strength and abs of steel.

Ella has had the same wonderful nurse, Cassondra, for over a year now. She has been putting in fifty-hour weeks with Ella and wanted some time off. (I can’t say I blame her.) She asked the nursing company in May to pull her off the Monday schedule starting in September. That has left a gap, that five months later they still can’t fill, and Ella has consistently been missing one day of school a week. Missing school for Ella means missing therapies. Therapies that reinforce life skills and help show her how to navigate her world.

I have spoken to the nursing agency and they give the standard answer, “We are looking for nurses in your area ” I have also reached out to the district with my concerns. Our contact in pupil personnel is amazing but I took it over her head to the superintendent’s office thinking they had more pull, even offering suggestions of my own. I was blown off and told that there is a nationwide nursing shortage. Cool, only I’m 99% certain this agency is taking on new cases when they can’t even fill the ones they have. I know for certain it is not just Ella’s case either. What irritates me more than anything is the blown-off. Don’t come back at me with facts I already know, especially when I acknowledge said facts in my initial email to you.

Yesterday we went to pick up Ella’s seizure meds. We were almost out and I got a call they would be ready. When we get there we are told we need a pre-authorization before it can be filled. The pharmacy said they called to tell us that and reached out to the physician as well. I immediately called the doctor’s office. They have no record of a call, nor do I, and I ask them to please help rectify the situation. The angelic office staff makes magic happen in two hours on a Friday afternoon, knowing without these meds Ella will most definitely have a breakthrough episode.

Here is where I nearly lost my mind. I called back the pharmacy and asked them to put it through again. She does and told me it is approved. I asked when I could get it. She told me on Monday. When I explain we don’t have enough meds until Monday and the pharmacy always has at least a partial dose on hand she matter of fact tells me they do NOT and says I can wait until Monday or find somewhere else who has it. I asked her to please look locally to see if any of their sister stores have it. . She told me no one does and sends me on my way. Well, in calling around and asking other pharmacies I found out our pharmacy did have a partial amount on hand. Wooooo saaaa.

I drove over to speak directly to the pharmacist about their supply. She gave me some line of bullshit, then amazingly found enough to get us through the weekend. I must have told them four times how Ella needed these meds to remain stable. Not one person in that pharmacy could have looked and offered us a partial dose, after clearly dropping the ball on making the pre-authorization call? Why? How lazy and cruel can you be? It took all I had to not rip everyone a new one standing behind that counter. I will be following up with management because none of what happened was okay.

It always amazes me how some people treat the medically fragile population. We fight school districts, insurance companies, DME companies, pharmacies, and anyone else who stands in our way of getting what we are entitled to. There are so many other little things we fight for as well. It’s mind-boggling to me when I see other populations of people getting handed what they need, some of which are state and federally funded.

I’m tired but I’m ready to fight. Bring it.

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