She is on a new medication called Amytriptaline, which was causing some psychotic side effects. the med is used for pain control, but she was suffering from just about every symptom on the side-effects list. We were told that most side effects disappear after one month of usage and she's been on it for one month and we are just now starting to see some of the psychotic symptoms disappear, thankfully! I don't think she's on a very high dose though and she is still in pain, so hopefully when we increase the dose, she won't have the same side effects.
she had a really good week. we have her on the Vivonex formula and we came home at a rate of 30ml/hr and adding 250cc of pedialyte a day into her feed bag to help account for the fluid loss. We have been trying to increase her rate to a rate that can both nourish and hydrate her and so far, we have her at a rate of 37ml/hr during the day and staying at 30ml/hr at night. Unfortunately, yesterday was a very rough day for the tummy and she wash aving a lot of pain and bloating and had blood sugars in the 60s. i had to put her on straight pedialyte with sugar. I have to run this a bit faster to try and avoid the hypoglycemia so i was running it at 40cc/hr and at night, she started to get really distended. Her motility is being really buggy. But i think ti's jsut from all the excitement of being back at home. Plus, we had the twin's birthday party this weekend and she was really active and running around and jumping int he bounce house. And then yesterday was her first day back at school. so she's been pretty active. Just stinks that so much activity is healthy for you, but makes her tummy act really mean. At least it's still moving and I can giveh er a medication to help take the pain away for a little bit.
I have also come to terms with the fact that no matter what I do and how hard I try to avoid it, Quinn is ALWAYS going to have her good days, weeks, and months and she's ALWAYS going to have bad days, weeks and months. her GI motility is just a piece of work and I have learned to accept that she will have a bigger belly than other children, she will have more pain and require more pain meds, she eventually be smaller than other children. I learned to screw the calories and give her a better quality of life. Yes, calories are important, but sometimes, when the pain is too bad and the tummy is too big, I just need to cut off her feeds and give her a break and run pedialyte with sugar instead ot keep her sugars up.I never wanted to do this before because I never wanted her to lose the calories. Unfortunately, she's tolerating such a small rate of formula, I've always felt that pushing for the calories was really important, when in reality, she just needs a boost of hydration and sugar and time to let her belly start working again. We need to avoid TPN as I have been told many, many times before and see in far too much, the side effect of TPN is death. the line infections that TPN causes are so serious and very life-threatening. Plus, it destroys the liver. The ONLY way that I will EVER agree to send Quinn home on any kind of TPN is if there's nothing moving in her GI system and she is skin and bones and totally malnourished. As long as she has some sort of motility. Just as with her stomach. i know her stomach motility sucks so bad. It's terrible! But my kid, she loves to eat by mouth. Right now, her stomach can still move stuff into her small intestine. Yes, it is a very long process and what she takes in orally is a fraction of what a child her age should be taking in orally to sustain life, but since the stomach still works and I can at least drain some of it if it's not moving fast enough, as long as her stomach will allow it, she will still eat by mouth. it's a small amount and mostly in pureed form, but it's something. Same with ehr J tube. Quinn's small intestines really do suck. you can actually see lumps throughout her small intestine when her motility is being slow of where her motility is more sluggish. It's like a traffic jam in certain areas. It's the strangest thing to actually see her tummy all lumpy, but hey... as long as stuff is still moving, yes slow, but as long as it's still moving, she's going to remain fed through the J tube. it's going to take a lot of work, but I HAVE to do this, for Quinn. TPN is not what I want for her. It's something I will avoid for as long as possible.
Also, while in the hospital Quinn was evaluated for her swallow and she is back to having a terrible tongue thrust and stage delay. So we were referred for speech therapy again for feeding. She's having a hard time swallowing, but her swallow is safe. It's just very difficult for her to get her food down into her stomach. Like she tries very hard looks like she always gets stuff stuck in her throat when eating and she's gagging on it and stuff. Anyway, so that's something new to add to her list of things to do. She's had feeding therapy before, for very much the same reasons when she was a baby, however she hasn't needed it since she was 2.5 years old. It helps. she always pockets food, but she's ALWAYS done that... never something we have been able to break. But also, she pushes forks and spoons under her tongue instead of cupping her tongue like a bowl, I dont' know why she can't do this. She also can't stick her tongue out to lick her upper lip. It's weird. But we will figure out what exactly is going on.
Anyway, here are some pictures.
Ok, so I lost my USB cord to my phone and I had to go through photobucket, but photobucket is no longer easy to work with and it's slow so here's clickable thumbnails. sorry it has to be like that.
How Quinn was when we first got in, not how she was in ER, because somehow, she was fine in the ER lol! She was feeling really icky and tummy was so painful.
Look at this picture, you would never know that there was a screaming 5 year old in the bed next to her, the florescent lights all on and she had been and was being moved and poked and prodded by nursing students and nurses. She slept through it all.
This is how her stomach was looking after about 10 hours of 10ml/hr of 1/2 strength vivonex. Her tummy just was not working very well. It was firm and lumpy in the areas that were sluggish.
This is what her tummy is suppose to look like! This was a good tummy day and we were almost at full strength, i think she was on 20ml/hr or something. She was having a good day.
And this is what her tummy looked like when that nurse fed her that tray of food and tried telling me that she was not at all distended. I snapped a picture right after she walked out of the room. this was when i had a break down moment and was literally a sobbing mess trying to tell this doctor what had just happened.
This is what her hand was looking like when she was getting vancomyacin in her peripheral iv. It actually got worse than this and had to be cut off and ran continuously over the course of 2 hours.
And here are some pictures of our bounce house fun. I just love the look of complete happiness in her face.
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