This is blog #37. I have not blogged in a while. It seems that most of the blogs I write are negative things, not positive things, however, it is my way of keeping the masses informed.
Evangeline has started throwing up. Because of her Nissenfundo placation, she is not supposed to do this. It all started last week, when she spit up. Now, a week later, spit up has turned into full fledged projectile vomiting. For her therapy, this could quite possibly be a good thing. She has started putting foods in her mouth, and started taking sips again, after a long hiatus. (She got a really bad cold and decided not to eat anything) Well, now she is well, and is has decided to try foods again. Still not enough to sustain her, but she is doing much better.
However, our problem lies in keeping her sugar up. Once again, now, after she vomits, I have to go back and re-feed her to keep her sugar from dropping. We also can no longer use the pump at night to feed her. There is always the fear that she will vomit on the pump, and then get it into her lungs, and we would not hear this happening because we are sleeping.(aspiration) So, for safety reasons, we now feed her during the night, to keep her sugar high, and still keep safe.
So, basically, she now gets bolus fed every 3 hrs 'round the clock.
Thankfully we do have Annessa. We have contemplated changing her to nighttime hours, so that she could feed her during the night, but then I would have to find someone to watch her during the day, while I worked. So, for now, I am waking up to feed her. However, we have already run into issues with that,too. Not only am I completely dragging during the day, but I was late on her feeds, 2 nights in a row. I woke up at midniught to feed her, then set my alarm for 3, and didn't quite make it. I woke up at 4:30. 1.5 hrs late!!! That could be REALLY bad for her LCHAD. I don't know what the right solution is.
We have contacted her "care team", as I like to call them, so that everyone knows what is going on.
I am thrilled at the prospect of her eating by mouth! Believe me! It is something that I have prayed for, daily for the last 5 months. I was even aware that this might happen, however, I did not consider the implications that would occur with her Nissen coming loose. With it comes a pandora's box of problems. For not just me, but her too: Because she isn't sleeping as well, she is tired during the day. She drags too!
I just thought my sleepless nights were over. Instead, I now have responsibilities: to both her, and both my jobs, that I don't think I can fully fulfill.
To top it off, I am trying to find a new therapy for her, one that will be more beneficial. I want her to eat. Bottom Line. I am looking for something more aggressive. Perhaps we can make eating a pleasurable experience, rather than a painful, scary experience? (If only I didn't like to eat so much! haha)
I have been on the phone all day with therapists, Drs, nurses, our dietitian, my sister, basically anyone that will hear my plight. I am willing to try anything to make her better, and it seems nothing is working.
Sorry, once again, for venting. I just fear that she will never learn to like food, because we keep shoving it down her.There is no easy solution. I keep waiting on the right answer, but I can't seem to find it. I love my Girl to pieces, and I will always love her. I am willing to go through this, and much more for her, To keep her healthy and well. If only life wasn't so hard.