Isnt it funny how in one day you can go from feeling good, like life is improving overall, to completely stricken the next. I feel as though things were getting easier, i have been able to handle my emotions better, and have been feeling so much more motivated lately. It was like I was feeling hope again after the long dry spell of none. Today just threw me for a loop. We met with Alexa's case managers a few weeks ago and they evaluated her to see if she qualifies for nursing care, at the time they told me that it looks like she'll qualify for 28 hours a week of nursing care. They have a formula based on how much skilled nursing she requires daily, if she has over 2 hours of nursing care daily then she qualifies. Alexa definately meets those guidelines. She needs chest PT, cough assist and suctioning at least 4 times a day and then as needed on bad days. Each time we do this it takes at least 25 minutes, x4 thats 1 hr 40 min right there. We also have to change her dressing every 2 hours, give her meds through her gtube at least 3 times a day never mind all the PRN pain meds we give and all the flushings, we have to maintain her jtube feeds, and finally monitor her with all her breathing difficulties. They came back today and said that some of those things are just parental things, and they went from apporving 28 hours to none? How is that? I cant even hire a PCA to take care of our child because of her feeding tube alone? In the hospital as a nurse I would do the dressing changes, tube feeds, medications, suction, cough assist, chest PT, and monitoring her breathing through out the night, not anyone else, these are all called skilled nursing interventions which I get paid to do... I went over everything with them and they couldnt give me a reason why some of those things are parental things. I mean feeding Alexa alone takes nearly an hour just to get her to eat a few bites, and I consider that parental although it isnt normal. Learning and teaching her sign is parental, but again not normal. They argued that I havent taken her to the ER in quite a while. Well just because we've unfortunately had to learn how to manage her care 100% doesnt mean she doesnt still need nursing care. I just opt not to go into the hospital unless absolutely necessary. I dont want to put her through the trauma or have to stay in the hospital for weeks at a time. They are going to review her case again, but it doesnt look good.
On top of that I dont think we're getting to do that dream day camp this summer. We havent heard anything back from them and the week we were supposed to go is fast approaching. It's like all these good things were happening to easily, we shouldve expected it to go all wrong. We were all really hoping to go this year, but if it doesnt work out there is always next year. I just wish they would get back to me one way or the other.
Instead of an easy tranisition with something we need we yet again have to fight for it. I was so excited when we thought we'd get those nursing hours. Feeling like I could have some part of a life back, and with this denial its like they just took it away. I wish there was some way to numb these feelings until I could find some positive spin on things. Or maybe I could ask the ride attendant if he could stop the ride, because I'm so sick of this emotional roller coaster, I just want to get off. I feel like I'm sliding back into a dark place right now. I just had so much hope that our lives would be improving soon. I wish these things didnt effect me so easily, and I could be strong again. I didnt use to be such an emotional wimp.
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