Second Trip to the ER--Still No Answers

I had so many ideas for the title of this post tonight: "Frustrations Mounting"... "Getting the Run-Around"... "Who Will Help My Daughter?!"... "Beware: Venting and Complaining Ahead"... Needless to say, we've had a rough night. I've waited all day for Annie to pass urine so when she still hadn't by about 6:30 tonight, we called the doctor's office. After describing her horrible night last night, her possible aspiration, and now her lack of urine today, in addition to continued vomiting even on pedialyte, not to mention the continuing diarrhea, they told us to take her to the ER. We know from past experience that dehydration warrants admission, so I packed a small bag and prepared to stay the night and all day tomorrow. I was honestly relieved and excited to finally go to the ER knowing that she would be admitted and we'd start resolving all these issues.

We arrived around 8:30pm and got to our room pretty quickly. They immediately ordered some blood work and a chest x-ray. (All the while Annie continued to dry heave.) By about 11:15pm the doctor came to tell me that Annie's blood work all looked good and showed no evidence of dehydration. Her chest x-ray showed that she did not have pneumonia despite her congestion and inability to clear her secretions and phlegm. He said he'd get our discharge papers and we'd be on our way.

I said, HOLD IT! And proceeded to ask all my questions about what in the heck we're supposed to do to help Annie! I said, "So we're just supposed to let her vomit all day for several more days, continuing to risk aspiration until we can see a doctor who can help us?!" And he actually said, yes! He said it's not harming her to be vomiting because her blood work shows she's still maintaining hydration, and if she was going to develop pneumonia she would have gotten it by now! I was stunned.

I continued to challenge everything he said, like why is she not urinating, and he said if fluid is coming up and out the top it won't be going out the end. Oh. My. Heck. If it's coming out the top it's obviously not getting absorbed! Anyway, I won't entertain you with all the other nice things I had to say to this doctor. His only advice was to talk to our GI and pediatrician more to get the c-diff under control. I flat out told him that the GI and pediatrician have now both referred us to the ER--two trips in just 6 days. He didn't care. By this point I wasn't surprised.

On the drive home I just wanted to shout "Who will help my daughter?!" I'm so sick of doctors passing us off to a different doctor just to have them pass us off to someone else! I'm tempted to remove her from all antibiotics like we anticipate the infectious disease doctors doing, but I know without her cipro she'll get a UTI and then we'll be in even worse shape. So again, I'll call the GI in the morning and demand that he do SOMETHING to help her until we can see infectious diseases. I guess I've lost track of time, because after looking at a calendar today, I realized this is actually the 10th week we've been dealing with this. Isn't that long enough?!

So for tonight we'll just pray that she doesn't aspirate and have another coughing fit. I'm not sure what to even feed her tomorrow since she's gone 24 hours now without any calories. She still vomits with the pedialyte, so I might mix in some nutren jr. tomorrow to get her strength back up--which will surely mean more vomit again tomorrow, which means no school again too, but the pedialyte makes her vomit anyway, so we might as well try for some calories.

I've realized today that one huge blessing I've been grateful for is that even with all this vomiting and being off schedule, Annie hasn't had any seizures. Normally this amount of vomiting means she can't keep her seizure meds down and her seizures start going crazy. I'm absolutely amazed that her seizures are still being controlled--yet another tender mercy.

Sorry for all the venting in this post. My patience is starting to wear thin. But to end on a happy note, let me share the highlight of my day, possibly even my week... We managed to take Annie to her parent-teacher conference today after school. She struggled to demonstrate her eye-gaze communication device and I knew she wasn't feeling well. We then sat and listened to her 3rd grade teacher, special ed teacher, and other therapists tell us about the wonderful things Annie has been doing at school. Her peers love doing buddy reading time with her and she's able to take her turn "reading" by using her communication switch. I loved hearing all about how great things are going in school and felt so sad that she's having to miss so much of that lately.

But then as we were about to leave, Annie starting giggling. Not just a small chuckle, but full out laughing and grinning ear to ear! She got laughing so hard at one point that she was even squinting her eyes closed as she laughed. All of us just stood there soaking in the beautiful sight and sound!

Annie is my absolute hero. She always will be. Although she has been struggling for 10 weeks now with issues that no one can seem to help her with, although her condition only seems to be worsening, she still manages to find joy and happiness, and share that joy with others. I continue to be humbled to think that I was chosen to be her mother. Many days I don't feel worthy. I am forever grateful that she is my daughter and that we have her celestial spirit in our home. I just need to better follow her own example of patience and faith.