At whits end

We are at our whit's end. Jess and I have had MANY discussions about the best course of action at this point. Here is what we are thinking... when we came here on Friday and then admitted on Saturday we felt like she had a virus and just needed fluids to help her dehydration. We were thinking a hospital stay of no more than 24 hours if at all. I just woke up to day 5 in the hospital so so much for the 24 hr or less stay we had prepared ourselves for.
When we brought her to urgent care here is what was going on:

• Slight fever
• 1-2 diarrhea every hour
• 1 throwing up
• More cranky than usual
• Slight stomach cramping
• Slight dehydration
  
• Still eating 3oz every 2-3 hours
• Still sleeping
• Bilirubin 13.9 (up from 10.2 at 2wk apt)
• Negative Rota screen
• Diagnosed with Rota
  

Here is where we are now:

• 2-4 poopy diapers a day all of which are diarrhea
• 2-4 throwing up sessions per day
• WAY more cranky than usual
• Severe stomach cramping
• Only eating 1.5-2 oz every 2-5 hours
• Not sleeping well
• High liver function tests
• Bilirubin 17 (She is EXTREMELY yellow at this point for her age)
  
• Lack of interest in food
• Distended belly
• Rash on head and belly (two different rashes)
• Third negative Rota screen...still being told it's Rota
• Very lethargic

It's hard to explain her everyday behavior but she is not herself now. Viral infections usually run their course within 5-10 days. We are on day 6 of the virus symptoms and by now she should be turning a corner and doing markedly better...not worse. Her liver function tests would not be high if it was just a viral infection or if it was due to dehydration, both of which the doctor keeps telling us.
We want more testing done. We want a CT or a sonogram to show that her liver and ducts are structurally appropriate with no blockages or swelling. The doctor thinks this is excessive testing.
Right now we have less answers than when we got here and we are watching our tiny one month old daughter deteriorate. She has small moments of her old self but they disappear quickly into the whining/cries of stomach pain.
Here is where Jess and I are at the moment...we figure we have four options

1. Do nothing and continue with the doctor's course of treatment
2. Plead our case AGAIN and see if we can get our doctor's Attending to come and see us to speak further about our daughter's condition.
3. Speak to the patient advocate and see if anything comes of that.
4. Request to be sent home if we are not seeking out answers and if she gets bad again take her to the bigger children's hospital downtown.
   

Number 1 is not really an option at this point. Both of our nerves cannot handle more of nothing. We are actually thinking about a combination of numbers 2, 3, and 4. In that order. We feel like we can keep her hydrated at home and if they are not going to attempt to figure out what is plaguing our daughter to help make her better we need to take her home and figure out our next move. We are going to meet with the doctor this morning during rounds. Plead our case again. If we go unheard ask to speak to the attending. If we aren't able to see him or if he also refuses to seek answers we will ask to speak to the patient advocate to see what can be done from that end. If we are still no where at the end of that process we are going to request to go home. Jess is also going to call her pediatrician today to see if we can persuade her to help us.

Please do not get me wrong. We are not attempting to "prove" something is seriously wrong with Delaney. We just want to know that all that can be done is being done. We want answers even if it's to tell us, we did the CT and it shows the liver is not the cause. We did this test and it showed that this is not the issue. I can handle "it's not" just as much as I can "it is". But please stop diagnosing her Rota when 3 different stool cultures have come back NEGATIVE. We are not seeking invasive testing that would harm our daughter or cause her unnecessary pain. We just want answers so that she can get better...not continue to hang out in the unknown and not get better.