Since last Thursday there has been a lot going on...as always. But hey, I can't complain. As annoying and frustrating as this all is, if this is all we have to worry about, we're doing pretty well.

After Ellie got her enema last Thursday she broke out in a horrible rash. Surprise, surprise! Yet another thing she's allergic to. We gave her some Zyrtec in hopes of calming it down but had no such luck. We've been lucky so far that none of the reaction are anaphylactic (sp?). Close, but not quite there. We gave her a suppository on Thursday night before bed and Ellie was just screaming and crying. She was finally able to get something moving but had quite a bit of fussing to go along with it.

Friday morning Dr. M calls to see how Ellie is doing and tells me she's waiting to hear from the GI doc on call. El isn't really doing any better at this point, not eating much, etc. One day (maybe it was Friday...? IDK, they're all a blur) she only had, and kept down, about 4 ounces. She says either she or GI will be calling me to set up an appointment to see Dr. F for that day. A little while later a nurse from GI calls and wants to set up an appointment to see the NP, Kathy. I kindly told her that we (Dr. M and I) were told that Dr. F would be seeing us and we were told that we'd most likely be admitted for the weekend. She said she wasn't aware of that, she'd talk to him and then call me back. I hurry and leave a message for Dr. M clearly knowing this isn't what was supposed to have happened; Dr. F told her on Thursday during their conversation that he'd see us. GI calls back and says Dr. F was just under the impression that she needed to be evaluated and the NP was going to see us. *sigh* Whatever. I then politely tell her that I've been seeing an NP since September and get nowhere with them, except a new list of drugs. Obviously she can't do anything about it, so my bad for taking it out on her. Sorry, Lady. I get in touch with Dr. M as we're dropping Emme off at Nana's and she is so upset. Dr. F told her that he personally would see us. She decides to call the head of GI and ask him for a favor since she rarely sends kids to them. He said he would make sure we 100% see a physician. We get there, the NP comes in and asks questions about the past few days, and goes to talk to Dr. F. Did we ever see a physician? No. Their suggestion: try Lactulose. Mind you, we've tried everything else that thers is to try, nothing works. This isn't going to be any different! Not to mention we've been advised from EVERYONE to not use this because of the stomach pains that come with it. They said they can admit for the weekend to monitor Lactulose or we can go home. Naturally we decide to go home. They also want to do a flex sigmoidoscopy and rectal biospy but can't do it until this Wednesday, admitted or not (I don't believe this). *bigger sigh* I call Dr. M on our way home and leave a message. The first thing she says when she calls back is, "I canNOT believe this! You need to call the Chief of GI (gave name and number) and patient advocacy to file a complaint." As soon as I was near a phone I left a message for C of GI and a patient advocate. This care is just getting ridiculous! Fast forward to today...

I get in touch with a patient advocate who is more than compassionate with the less than satisfactory care we've been given. She says she will page Dr. F to call us since I had quite a few questions. It's so crazy because instead of calling us, he wants to see us tomorrow at 1! It's amazing how things work when you have a patient advocate on your side and the doctors are afraid of getting in trouble...

So as of now, that's all the juicy news I really have. El still won't eat hardly anything. She's had 8oz. total today and it's almost 2pm. I'm thinking we'll end on 12-13oz. today if all goes well.

Oh, I forgot to say, Dr. M wants us to consider her having Eosinophilic Gastroenteritis and Colitis. We won't know for sure until Wednesday when they run the tests (are trying to schedule an endoscopy, too). It's basically where you're allergic to anything that enters your gut. For Ellie it's both areas; from stomach to bottom. For now, we'll err on the side of caution and avoid all food. This isn't something you're ever cured of but you can go into remission. If she does test positive for this, she'll most likely have to avoid any and all food for a long while and have a good chance of having a feeding tube so she can get the needed nutrients and calories. Eventually you do a food challenge to one food at a time and see how they do. I know a lady whose 2 year old can only tolerate Neocate!

Anyways, I'm in need of a little rest!