If you can't hack it then get out of the way

We are finally home from Olivia's MRI/Hearing test and I'm so frustrated I just have to vent a little bit.

For the most part I feel that the care we've received at Madigan (the hospital here at Ft. Lews) has been good. There are even times I would go so far as to say it has been outstanding. Today was not one of those days. I am so frustrated! If you're not capable of coordinating various services to provide for my child then admit it and move out of the way so that we can make sure she is seen by someone who's capable of caring for her!

We've had Olivia's MRI/Hearing test scheduled for several weeks now. I'd spoken with the chief of audiology. I'd given her hard copies of Olivia's last three hearing tests. I'd given her literature about Sanfilippo Syndrome and hearing loss. She was prepared and was on board with our plan to administer the hearing test while Olivia was sedated for her MRI.

Last Friday we spent 3 and a half hours at Madigan doing our series of pre-op appointments. We met with an anesthesiologist. We explained to her that Olivia would be having an MRI as well as a hearing test. I gave her copies of the "difficult airway" paperwork that we were provided after Olivia's last surgery. I gave them literature about Sanfilippo Syndrome. I even handed out purple awareness ribbons because it happened to be International MPS awareness day. She assured me that they would meet and come up with a plan that would address our special needs. We met with a nurse coordinator who was responsible for coordinating all aspects of the MRI and the hearing test. We were there for 3 and a half hours!

Today when we arrived as instructed at 7:45 am for Olivia's 8:00 am MRI. The woman at the check out desk was rude but it's early in the morning lets give her the benefit of the doubt. She told us to sit in the waiting room and someone would come find us. Olivia hadn't had a thing to eat or drink since 7:00pm the night before so she's thirsty and hungry. We wait, and wait. Finally around 9 am we see an anesthesiologist. He says they're running behind but they'll be ready soon. "Great, do you have the information about her "difficult airway", I think it's in her chart" (I'm being super polite here, I know it's in her chart, I saw them put it there). He responds by saying that he hadn't looked at her chart. Hmmmmm. NOT OK, you are not about to take my child and put her to sleep without looking at her chart. I give him the info, he looks it over and is concerned. He's not sure they can sedate her here in the MRI area, they might need to go do it in an operating room. He needs to confer with the other anesthesiologists. Go ahead, please take another copy of this paperwork. They return about 45 minutes later with their plan. We're being sent up to the OR. They will put Olivia asleep up there, then bring her down stairs to do the MRI and then bring her back upstairs to do the hearing test. Why didn't they have this plan in place before!!!! We go upstairs and at 11 am they are finally ready to put Olivia asleep to do the MRI and then the hearing test. They told us the entire procedure should take a couple of hours, it ended up taking 7!

Olivia did great, it's all over. I don't know the results of the MRI. We never spoke to anyone in radiology. They didn't give us any results, we never met them. By the time it was all over I just wanted to get home.

But seriously, get it together people. My child has some special needs, I provided as much information as I could. If you can't get it together then I do not have time to deal with your incompetent system. UGGGH!