What Will Be the Dance For the Day?

The frustrating tango of progress and setbacks is enough to drive even the most patient person up the wall. Just when you think you’re making headway, OH! Here’s a curveball, leaving you feeling like Sisyphus pushing that ludicrously huge boulder up the hill.

I am not “into” mythology but do know the tale of Sisyphus. Admittedly, it is primarily because I found his name to elicit a giggle and wanted to know who he was. I will briefly tell his tale at the end if you are so inclined to continue reading.

The worst of the UTI is over and Mini Mayhem is back to herself for the most part. She is STILL NOT tolerating BiPAP. The “scuba” mask didn’t work. It started out well, but she was just not feeling good and wasn’t up to being feisty and messing with it. They hoped it would work since it covers more area and could help make the air feel less forceful. It was a little big and one RT meticulously cut out a barrier to take up space and protect her face. It ended up on the floor, so it had to be thrown away. The next night, they were apparently in a hurry, cut 4 small pieces of barrier foam for each side, top and bottom and skedaddled. It left gaps and the seal on the mask lasted about 5 minutes after they walked out of the room. Mayhem moves her mouth causing the mask to move and will move it sideways or halfway across her face. The following night the Pulmonologist wanted to try what he called a nasal pillow with a chin strap. One couldn’t be located so she got a mask that went over her mouth and sat under her nose. It has been an all-night fight. She unhooks the tubing or takes the mask apart over and over; put it on, take it apart, put it on, take it apart, put it on, move it, and disrupt the seal. The past two nights she has been wide awake, ALL NIGHT, and then goes to sleep once the mask is removed and sleeps all day. They are back on the hunt for a nasal pillow but aren’t sure if they will be able to get one since it’s the weekend.

The pop-up UTI sort of threw us off course from the main reason we were here, delaying progress with her respiratory issue. We are refocused but on weekend delay.

ENT came by Thursday and the fellow and I discussed my concerns and how although she has the BiPAP to use at night, she is not tolerating it and although we are working on that, her O2 saturation dropped last Saturday while she was AWAKE. I told her that I am a realistic person and did not expect a tonsillectomy to miraculously cure her apnea and she become ENTs poster child, but even if it helped a little, it’d be a win in my book. She was going to talk to the rest of the ENT team and see if they needed to do any tests and get back to me. I haven’t heard a peep since she left outta here Thursday.

Pulmonology’s question is could removing her tonsils improve her OSA (obstructive sleep apnea) enough to change from BiPAP (air blows and adjusts pressure on inhalation and exhalation) to CPAP (same pressure on inhalation and exhalation) and maybe she tolerate it better. Pulmonology has also mentioned potentially using high flow oxygen with the amount of oxygen turned down, so she mainly benefits from the air.

I don’t expect much over the weekend other than chillin' (us) and billin’ (hospital). I will also continue to facetiously harass the residents because it’s fun.

The ultrasound that was done last week showed a healthy Karla the Kidney. However, it did show a bladder diverticulum and hydroureteronephrosis. A bladder diverticulum is a pouch in the bladder wall where the bladder lining pokes through a weak place in the wall. The UTI is likely what caused it. Hydroureteronephrosis results when there is an issue with urine outflow and the ureter dilates. It all sounds bad, but her Nephrologist in AL has assured me that it is common, and I have no need to panic. Everyone is on the same page here and there on treatment. She will be on an antibiotic to prevent another UTI since urine can sit and hang out in the pouch and brew up germs. Often, they don’t cause issues but if she begins having reoccurring UTIs, we will discuss additional treatment options. She will have to follow up with a Urologist and they called for her to get an appointment scheduled. They called me and the first available is FEBRUARY! Feb 👏 u 👏 ary👏! They sent a note to the nurse who can speak with the doctor about putting her on the schedule and overbook the doc, but the scheduler doesn’t have that ability.

This is a HUGE frustration for me. It tap dances on my nerves. They tell you to follow up with “specialty” who will need to refill meds that were started. You get discharged with a month's supply but can’t see the specialist for 4-6 months, if not longer. It’s like this everywhere so it’s just not Le Bonheur, the adult world is the same. Nothing I can do but I am still gonna be mad about it. Most days feel like a test of endurance, patience, and sheer willpower as I limp my way through the maze of challenges that pop up without warning.

Sisyphus

Due to his continuous betrayal and deception, Zeus sentenced Sisyphus to an eternal punishment of a never-ending cycle of torment and frustration. He was plagued with the task of ceaseless repetition of pushing a large rock up a steep hill, only to have it slide back down every time he approached the top.

His endless punishment symbolizes the ongoing challenges that characterize the daily struggles we experience on our human path through life.

Example of Mini Mayham and her dismantling skills. The circles are the three separate pieces that should be connected. Her headgear (top L) should be connected to the mask (bottom L) and the mask connected to the tube (bottom R). 😦