Frustration!

Today has really been a day. I had to unhook Addy's feeds at 3 o'clock this morning and switch her to Pedialyte until 6 a.m. for a sedation at 9 o'clock. She was scheduled to have her ABR test today. So I get her there and after waiting about 20 minutes we are finally called back by the nurse who will be monitoring Addy once she is sedated. She asks some general questions and then wants to know how long she has been on O2 and if she is on all of the time. I tell her that she's been on it her whole life and yes she's on all of the time right now. She gets us settled with the audiologist and says that she is going to check with the doctor to make sure we are good to go and she'll be back. Well twenty minutes later she comes back and says that she isn't an anesthesiologist or a nurse anesthetist and she just doesn't feel comfortable being the one to monitor Addy due to her significant lung and heart issues. Which she has no heart issues that we are aware of according to her cardiologist. She says that it would probably be better to do the test in the hospital. So I ask why wasn't it scheduled that way then? This office is the one that ordered the test! So we ended up not having the test done! So Addy's feeding and nap schedule was completely off today for nothing! Besides the fact that I had to get up at 3 and 6 to make sure her feeds were off! I just thank God that I didn't have school today due to ice and I wasn't losing pay for nothing! UGH! So now we wait to see what they want to do next. So now I'm waiting on the cardiologist to let me know whether we can do the tonsillectomy and adenoidectomy in Springfield or St. Louis and whether or not we can do the ABR test! This is so frustrating! It's not like the ENT hadn't ever seen Addy before or was unaware of her medical issues! So to top the day off we get home (30 minute drive) and I go to change her and she has this funky looking rash on her legs and her left one is a little swollen and feverish. So I call the pediatrician's office and wait for a call back. In the mean time her PT came to work with her and is like "What is wrong with her legs?" Addy was cranky because she'd missed her nap and now her legs were probably itching or hurting or something. It was horrible. The pediatrician called me back and just had me give her Tylenol and her prescribed medication for hives for the time being because he didn't want to have me travel back to Springfield and expose her to a million things in his office. So here we are! Happy Valentines to us! Addy's going to be up late since she had a really late nap and now I'm worried about her legs! Poor thing! So if anyone has any idea what this rash looks like let me know please!!!!!!! We did have fun in the bath tonight so I did post fun pix too. I fell so much better now that I have vented! Thanks everyone and have a great Valentine's night!