My Brianna is sick

Life has been hectic to say the least.  My Brianna is very sick.  She hasn't felt well since the end of March.  She hasn't been in school since then either.  

In addition to her normal medical issues we have been trying to figure out what the heck is going on with her.  What they first diagnosed as strep (turned out negative, then mono (also tested negative) has turned into well...they aren't sure but something bad is going on.

She had multiple blood tests done 3 days in a row. They tested her urine that screamed severe UTI.  How didn't she show symptoms? We had 3 docs appointments last week alone.  My poor girl is like a wet ragdoll.   She is used to feeling not 100% so that's the last thing she would complain about.  She has been severely exhausted, feverish, her reflux is working overtime, sore throat, lack of appetite and was getting a pain in her side with deep breaths.  Then the doc said maybe it was pleuricy (sp?)  Guessing is not on my list of requirements and that seems what they keep on doing.

Over the weekend she seemed to brighten up after they gave her a different antibiotic.  I took her to our baseball car wash since she insisted and all I let her do is hold the sign and hang out with her team.  By the time we got home my ragdoll was back and she went to lay down.  After about 30 minutes a blood curdling scream descended into my living room.  I tried to call the doc we've been going to for all the kids for 22 yrs. and the on call nurse practioner would not call the doc!!!  I was infuriated since he specifically said to call him directly if anything arose.  She wanted a complete medical background.  So I told her...TE fistula, Esophageal Atresia, Vater syndrome, floppy airway, asthma, bladder issues and extreme, extreme reflux.  Her response was far from reassuring...she asked me to explain the  medical conditions ...she had no idea.  Nope tell the doc to call me asap.  She simply refused and I didn't have time to waste on classes right now!

We took her to the ER.  On a scale of 1-10 her pain was a 9!!!  This is my baby.  They gave her  Dilaudid (sp) and within minutes my poor girl was in lala land.  They did an ultrasound and xray and told us her spleen is severely enlarged. She has bilirubin in her urine.   Her liver enzymes are very high.  The ER doc said to follow up with the our regular doc.  He said it was a virus that caused this but what kind he had no idea.  He said it has to run its course.  Hello...its been over 2 weeks. 

I called the doc first thing.  She needs to see someone who specializes in liver issues.  I've also called her GI for a recommendation @ CHOP.  I am just out of my mind with worry but I can't let her see that. 

Please keep her in your prayers.  This is my baby...she is part of my heart and its killing me to have to watch and be able to do nothing.  What am I supposed to do when she looks me in the eyes and says "Please Mommy...make it stop hurting?"  I'm trying...I promise I'm trying.  Lets hope the docs come up with an answer.  She's already dealt with so much in her short life...please don't give her something else God...she is the sweetest child.

She is resting now.  She is in pain.  They said that's due to the enflamed spleen.  They gave me oxycodone for her pain but we have to be VERY careful with it.  Hopefully she'll get a little rest before it flares up again.

Thanks for listening.  Even a MOM has to get it out sometimes.