My life with the Sullivan boys

They help the body pass waste. They also help filter blood before sending it back to the heart.  So there's two tubes coming out of Dermot's back. Those tubes are connected directly into his kidneys to relieve excess fluid and preserve kidney function. Dermot has a peanut sized stone in his right kidney (unshelled) and an almond size one in his left. They are actually many stones that have fused together. Through many tests, CT scans and ultrasounds we discovered the stones after a mysterious illness that included vomiting, high fever and heart rate and aspiration pneumonia. Last week we brought him to Mayo Clinic and St. Mary's Hospital for the nephrostomy tube placement. Because of hospital permission issues and doctor schedules, Dermot has to wait an entire month for his removal surgery. March 7th is the date.  We hope to have all the stones out on that date, otherwise, the tubes stay and another procedure is scheduled. Dermot now has a G/J feeding tube, two adju...

I just "googled" depression. Not sure why, I know what it is. I'm pretty sure I'm in a chronic state right now. Lack of motivation, aching muscles, sleep issues and a feeling of impending dread. Or perhaps it because of my current life issues: My beloved old beagle blind, deaf and peeing everywhere. She's seems to be the last remaining part of a life before special needs. a life that was easier. where choosing my outfit was a major decision and the make and model of my car defined me. I'm aware that her time here is limited. and I mourn her and the life that she represents every time I clean up a puddle or wipe the crust off her chin. Dermot's nurses have been a godsend and a cause for worry. We have someone in our house each morning at 7 am to wake Dermot up, dress and prepare him for school while I sleep in and drink my first cup of coffee, away in the dining room. A physical relief, but emotionally a step back from his day to day care. We hav...

Here's grief again. It started with a phone call from my brother. I wished him a happy birthday and he returned my greeting with a sullen voice. "I guess you haven't heard yet", "What?" I answered. He returned my question with the news that my favorite aunt, and come to think of it, my only surviving aunt was dead. "What? WHAT?! What?!!" I stammered. Only weeks earlier I had received news that my mother had suffered a stroke, so I was expecting him to say something about her. But this time it was her twin. Her alter ego. Her best friend.  Judy was everything my mom wasn't, and my mom possessed the qualities that eluded Judy. They were yin and yang. Opposites in many ways, but when they were together they were a site to behold. My mom was the driver, Judy picked the restaurant, unless Joni objected to the cuisine. They could talk for hours about the past, their kids, their grandkids. They’d giggle about each other. Mom ...

Dear 35 year-old self: Don’t worry, I’m coming for you. You are always in the back of my mind. I’ve kept you there for safe keeping. Until I was ready to see you again. I revisit that day in my head, but not on purpose. Mostly when I drive by Hennepin Ave. or walk down the hospital hallway. I’m relieved that they remodeled the scene of the trauma. Too much happened to you in that room for you to go back there, ever. The doctors moved to a different building too, so that horrid day will be easier. When it pops up in my mind it usually brings me to a silent panic, then I stuff it down into the darkness again. Not ready to tell you what I know now. You were free back then, oblivious to what was yet to come. Still living in a world of fancy cars, lavish trips and casual friends all around. Sure, there was that one operation, but it was a common procedure, almost as common as appendicitis. You weren’t unique, you weren’t alone. You were still coping well enough. Worn down a lit...

In AA the 4th step tells you to do a personal inventory. It is not pleasant or easy, it takes time and honesty. I've done more than one of these inventories in my nearly thirty years of sobriety. I've learned that unmet expectations is my downfall. Or perhaps having high expectations of others. Expecting people to show up, do what they say they are going to do and know that things will run smoothly, without surprises. Growing up my life was never predictable. I was a latch-key kid, parents divorced when I was in the third grade. My mom left. My dad drank. The television was my babysitter. My brother, older by two years was either my partner in crime or my worst enemy. I learned at a very early age to take care of myself. Mothers leave. Fathers disappoint you. We are on our own. If I took care of myself, then I wouldn't have to depend on anyone else, thus relieving me from the worry of being disappointed. This way of living worked well as a survival technique for a l...

I cut my finger tonight. I was chopping potatoes for the vegetable soup I didn't want to make for dinner. I didn't want to make anything for dinner. I cut my finger tonight and nobody cared. I cut my finger and I yelled, "god dammit". None of the other people in my house noticed. I left my potatoes on the counter, and ran upstairs to the band-aid bin. I bandaged my finger by myself and nobody noticed. I noticed, that nobody noticed. I returned to my potatoes and exploded. I yelled at all the boys in the room. I asked them why they didn't ask me if I was okay. I asked them why they didn't bother to see if I needed any help. .. .. I continued to yell. I continued to ask why no one cares for their caretaker. I'm the one that makes sure everyone else is okay. I put the band-aids on. I give the hugs when someone is sad. I listen when someone needs to talk. I fix things. I put things back together. I tell everyone that everything is going ...

The bag of urine sits at the end of his bed in the PICU. It's connected to the tube that flows up to the catheter inserted last night while I was at home and my husband was here. The thin foam pads are installed on his forehead and cheeks to stop skin breakdown from the ill-fitted bi-pap mask. The fourth one we've tried in the three days we've been here. The bi-pap is one reason why we are here in the PICU and not the regular ward, recovering. The two viruses and bacterial infection attacking his lungs is another. Just three days ago we were baseline. Suctioning occasionally to clear the harmless mucus that he coughs up regularly. But Tuesday this sickness came on with a vengeance. O2 levels in the high seventies, wheezing, grunting because he couldn't get a full breath, fever. Eight hours was enough. We had reached our maximum output of homecare. I called the ambulance mostly so I could get a break and have the professionals care for him until he recovered. I e...