I Don't Recall Getting Into A Handbasket

Mini Mayhem has a UTI. Again. Despite coming in for the second time with respiratory distress, that has been overshadowed by a UTI both times. 

Growth came back today, and her bacteria's name is Sue D. Moanus. Last time it was a dude named E. Coaleye. We changed gears today with IV antibiotics to one that will get rid of Sue. While getting her second dose, I laid down next to her in the bed and her arm board (which keeps the part of her arm straight where her IV is) was wet. The arm board and her bed pad got her antibiotic. Her IV leaked. So, although it's bedtime, we are waiting for the PICC team (IV experts with a cool handy dandy ultrasound machine to find veins) to come start another IV, she will get re-dosed on her antibiotic because the majority of it did not go to her and then she can go to sleep.

I am more exhausted than ever. I am too old for all of this. Sleeping on concrete would probably be more comfortable than sleeping on what they call "furniture" here. I haven't slept more than 3 hours at once. It's been very busy throughout the day, so I haven't been able to even nap, until today. There was an hour and a half this afternoon that I didn't know I was part of this world. My legs are swollen and even my good hip is achy. My knees feel like they are being flipped backward every time I walk. The stress has been much more as well so that contributes heavily to the overall exhaustion. 😫

When the Nephrologist came by today, I told her that I wanted a care conference set up next week and she was more than happy to oblige. She gets my frustration. Regardless of being unable to get an airway evaluation for MM while she has a UTI, we STILL NEED A PLAN! I do not feel waiting another almost 2 weeks for her ENT clinic appointment on 8/22 to begin making a plan to get her scheduled for what is necessary is unjustified, considering we continue to have issues! We were only home 12 days and back in patient! 

If ENT wants to print me something saying that it is completely safe to discharge when Nephrology and Urology say it is ok from her UTI standpoint, and that they accept full responsibility for anything that could potentially happen at home while we wait for her ENT appointment and then wait further for any tests, ok. (We know that won't happen.) ENT may have been resistant to coming to consult last time while in patient and more or less said it would be a waste of time this stay, they sure better be at that table next week.

This has been the most horrible stay in this hospital yet. To put it frankly, it's been hell. I have been very vocal about some of the ridiculousness that I have experienced every day! I have even made jokes. Sarcasm for me is a coping mechanism and posting about it originally was to help me keep track of things that have happened. Now I have a lengthening word doc going for this stay as well as mentioning things that happened during our stay in May and July. They have poked the Mama bear, over and over. My patience is gone. GAME ON!