Bad motility is bad

So, remember in my last post when I was talking about how Q was in the hospital to basically jumpstart her GI system again? Well, this is how dumb her hospital is... She had a fever and this green crap growing from around her site and I tried telling them that no matter how hard I tried, the green gunk wasn't coming off and had been there for almost two weeks at that time. Not only that, but she had a fever and was showing signs of bad motility and something was just off about her. after determining that the J tube was in the right spot they said that she probably just had bout of gut shut down and that now that she's tolerating her feeds again and that an infection is unlikely, we could go home. THANKFULLY! before all this went down, her pedi office had cultured the J tube site... duh because it looked so nasty and was so darn painful. Well, we got the results and she's growing pseudomonas, stapph and something else. LIKE REALLY!? WHY is her hospital so nonchelant about everything Quinn?! How come the children's hospital couldn't figure out that the J tube site needed to be cultured? So, we definitely could have been on antibiotics while we were there, especially considering the fact that all the bugs that grew on her tend to be antibiotic resistant.

AND... the green gunk that i can't get off is very typical of this infection and can't be removed with antibiotics or anything. It must be SURGICALLY removed. LOVELY!

So, I took her back to the pedi yesterday to check the site and the doc gave us a script for Cipro, an antibiotic and told me that i needed to get in touch with the surgeon to schedule removal of this stuff. He also said that it should NOT be so painful and is afraid there might be an abscess on the inside. It's just never easy, is it?

So that's what has been going down. Quinn's tube site is extremely painful, but we are making do. Eveytime she eats, her poor tummy hurts, even if it's just a cookie! Food is her enemy, yet her comfort and her best friend. Sometimes, i just wish she would not feel hunger and not like food. It's terrible to have to tell your child that she simply can't eat. And then I break down because she's so sad that I said no and just give her little tid bits here and there, I feel terrible when she doubles over in pain and says that she ate too much. Even though typically, she should NOT have eaten too much! Her stomach just is in the pits.

Here's another thing that is kinda terrible about Quinn. It's obvious when she is in pain and she comes up to me and tells me often enough that her tummy hurts her. she cries and she will tell the nurses, but when a doctor comes in, she claims it doesn't hurt her. I figured out why. It's because she knows that if she says her tummy hurts, a doctor is going to press right where it hurts just to see if they can feel anything abnormal or to see if they can localize the pain. yeah that happens way too often and she KNOWS it will happen. so when a doc asks her if she's in pain, even though she is, she will tell them no. Making me look like a liar haha! but I totally understand now. From now on, i'm going to protect my little girl and just let them know where her pain is, how bad it is and whne she complains because i'm her mom and that's what i need to do for her. She's had enough pain in her life then to be poked and prodded by a doctor to send her in tears, that's just not what she needs.

Despite the bugs growing in her system and the pain from eating and being fed, Quinn is still growing at a good rate. She also hasn't had any seizures since we started pushing meds through the J tube! That is just awesome.

We have an appointment to see a new neurologist next week. The old one has left hteo ffice and we are sad about that because she was just great! But i've heard some good things about the new neurologist and he treats another family I know who has mitochondrial myopathy. She says he is knowlegable about the disease so that's always a plus.

These are examples of Bloating from her J tube. So basically, this is bloating in her intestines. 

Below is a very minor example of Quinn's tummy pain. This is typical for at least 5 times out of the day.