still in

Here we are. Still in the hospital. I might go into details, I might not. Let's start off by saying that I've been quite disappointed in her care thus far. But that's really not entirely surprising, right?

There was a reason I was so apprehensive to just go home after being informed that Quinn's cultures for meningitis were clear. I was happy that she didn't have meningitis afterall, but I had a gut wrenching feeling that Quinn was not stable enough to be home, and that feeling was dead on.

A few hours after I posted that last update, Quinn started vomiting, profusely. She vomited every 5-10 minutes for three hours straight and continued to vomit into the next day. Despite my efforts to inform them that I had been concerned about her motiliy, they did not take it seriously until the vomiting would not stop. They did an Xray which showed she was very backed up with stool. They triedan enema, which did nothing. Quinn has been to the point for a month now where enemas don't work, at all. She won't even stool the flush out. It stays stuck up inside her. They tried giving her mirilax. It only caused her to vomit more. All the while, the doctor who was caring for her was not communicating with me at all. I got very frustrated with this and was emailing her gi and her mito doctor. Who were recommending different treatments. This attending did not like that I was consulting othere doctors and I believe I offended him in doing so. He belittled my suggestions and literally chuckled at my ideas of what was probably going on with her. He finally started her in golytely to try and clean out her bowel. I was elated when her care was turned over to the next doctor on Saturday morning.

It still has not been easy. Quinn originally came in for infection. When her bowels stopped working, it became a new issue, however these doctors do not look at my child as a whole. Quinn has mito. This is a multi-organ involvement! You cambria treat my child like any child coming in for just constipation. There is more to her care than that. Instead of looking through her records, they proceeded to write orders that were detrimental to Quinn's health. Quinn finally got cleaned out on Sunday morning, so they wanted to start her feeds. The first mistake: they ordered her a diet for age! When I learned of this, I informed them that Quinn's well being is dependant on a very specific diet. Had they bothered to read her file, they would have known that Quinn is only allowed a clear liquid diet and it is solely for her own pleasure. The liquids always get drained right out of her stomach and into a ferral bag. This is important because Quinn accumulates so much air and if it is not immediately drained, air gets trapped into her small intestines and can cause even further problems with her motility. It is essential that her stomach is left on a drain. The problem was fixed, but not entirely.

I took a little 1.5 hour nap this morning and woke up to find that Quinn had been removed from her iv fluids. Quinn has problems with hypoglycemia. Removing her from the fluids pumping necessary sugars into her body can cause her sugars to drop very low and she could go into a coma from this! I told her nurse to lags the doctors right away and get her back on her fluids! She did, but she told me also that the doctors wanted to see how she tolerated clear liquids. That is not a problem, it you do not put a child with a j tube on clear liquids orally! She does not absorb nutrients the right way, plus you are giving her liquids that are just draining out of her anyway! She needs sugars. So, they decided to put her on pedialyte. Quinn has gotten hypoglycemic on just pedialyte for me, she needs more sugar than that, but I decided to not say anything. I was already a little pissed and I didn't want them to think I was a crazy mom. My mistake!

I went out to get some coffee and left Quinn in the playroom. When I came back, she was sleeping in her bed with her fingers all bandaged up from finger pricks. When Quinn is feeling well and I take her to the play room, she likes to b in there pretty much untimely it closes. So I knew something happened. The nurse comes in to tell me that Quinn went unconcious in the play room and she was hypoglycemic. I should have pushed hard to get her back on her fluids! My poor baby. She slept for 3 hours after they brought her sugars back up. When she woke up, I asked her what happened and she told me that she got sleepy and couldn't stay awake. Poor thing. Had they read her file, they would have known she was at risk for this. Quinn needs a constant source of nutrition in her!

By this time, I know they have no clue how to take care of my kiddo. So I talked to the resident and tried to explain that Quinn's underlying issue is mito. This is a multi-system involvement. You cannot just treat one Thing and ignore the other systems. I time him that I was going to email her mito doc and asked him that if he requests special blood work (more specifically a chem 14 and ketones) if they would do it. His response to me was that Quinn is being treated for her bowels and that her metabolic state is secondary. She isn't here.to have special tests done. I wanted to slap him. Her mito, which is metabolic, is the REASON her bowels are in the condition they are in! It is obvious they don't know how to treat her mito as a whole... They put my kid unconscious because they were obviously unaware of the affects of cutting off her nutrients so quickly! That is purely metabolic. He said they treat kids for what they are in the hospital for. He said that they don't have to run the tests the outside doctor recommends.

I just don't know what to do anymore. I feel like my kid is neither safe at home, nor in the hospital! How sad.

Quinn is still losing weight. She weighed 42lbs at the end of august. She is now 32lbs. I feel like she needs a new care plan and I feel like the best place to make that plan, and execute it is in the hospital, where it is suppose to be a controlled environment.

That's what we have been going through, in a nutshell.

Quinn wa started on her new, higher calorie formula. We are trying to see if she tolerates. If she does, we should go home Monday or Tuesday. If she does not tolerate, well, we are totally screwed. I just want to get out of here, where Quinn can recover without the risk of being hypoglycemic, and being fed foods she can't physically digest. What a freakshow.

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