September 2020 Blog, Hospitals and Bracelets
It had been the usual exhausting stay at the hospital with my son when I returned home to the piles of mail and other household things that needed my attention. But first, laundry! All of the clothes and linens (yes, I bring my own sheets, blankets and pillows) that had been with us for the 2 night stay we had just endured, needed to be immediately washed. Even pre-COVID, any time after being in the hospital, the first order of business is to shower, change clothes, then wash anything and everything that can possibly be washed. It was September of 2020, and this had actually been our first visit to the hospital since the pandemic started over 6 months ago. We had been fiercely avoiding it for obvious reasons but also because I had been told that there was a no visitor policy. For kids over age 18, parents were allowed to be there during the day, but I was told they could not sleep over. My son is pushing 21 and soon he will be going to the adult unit. He will no longer will he be on the 4th floor of the north tower at Cedars-Sinai, where we have been going to for about 10 years, too many times to count, for various reasons related to his complicated, aggressive Crohn’s disease. Sometimes it has just been for fluids, IV meds and evaluations. Other times it was in recovery from the more than 7 surgeries he has had since 2013.
With so many hospital stays and interventions starting with his first colonoscopy at age 2, we both have a pretty high level of PTSD. The traumas fall into different categories. The top level is from the most serious danger that occurred in 2013 after his bowel perforation from a double balloon endoscopy which necessitated immediate, emergency surgery and redo of such surgery 4 days later due to a surgical error of unknown origin. This was followed by several other surgeries over the years. In 2017 he had surgery to put in a gastronomy tube, where again, there was an error of unknown origin according to the surgeon, that resulted in a redo of that surgery in the middle of the night 2 days later.
The next level of PTSD is from all of the non-surgical procedures such as the many times he had Picc lines or central lines put in, only to have them get infected or clot thus necessitating removal of such device and then ongoing shots of blood thinner medication daily for 6 months to treat such clot. Plus, all the endless list of meds given by injection at spaced intervals, and countless IV placements.
The next level of PTSD involves other tests like MRI’s CT Scans, x-rays and the like where they ask people who already feel sick and often nauseous to drink large amounts of disgusting tasting stuff in order to get images of the digestive system and figure out where the areas of inflammation, ulcers or leakages might be. Since he has his G tube or before, an NG tube which was inserted through his nose down to his stomach, he was able to ingest these preps via the tube bypassing having to drink it ,which, when he didn’t have any other option, never went well. Even with the tubes, there was always some kind of messy leaks or technicians who didn’t understand why we insisted on doing it this way instead of just drinking it, and things often didn’t go very smoothly.
Through all of these experiences, the difficulties of each could easily be worsened by a comment from a snotty nurse, an impatient technician or a callous doctor. “You are not the only patient with Crohn’s we have seen today, and they were able to just drink the 3 bottles.” Or “Other patients don’t take this long to get ready for the MRI” Or “No one else gets nauseous from the IV contrast” which they inject at the end of the MRI to enhance the images. Lowell gets nauseous and has to be pulled out of the MRI every single time. But yeah, it doesn’t make people nauseous! So we are told. And to be clear, I know other people with IBD who have the same experiences as I mentioned even though they will tell you “this or that never happens.” Okay then.
For this hospital stay in September, Lowell had been admitted because of increased pain, more difficulty eating, waking in the middle of the night due to pain, and symptoms indicating a flare beyond his standard level of tolerable symptoms. While there, his doctor suggested he have an MRI along with the usual blood and stool tests.
My son’s baseline results of these tests are always not normal, sometimes the doctor calls that “stable”. Stable for Lowell but for anyone else, the numbers might cause alarm. The MRI was long, traumatic, loud and more stressful due to COVID 19 and the general vibe at hospital then. The result showed increased narrowing due to scar tissue from his Crohn’s disease surgeries, but that in general, his Crohn’s ulcers and inflammation — meaning active disease — looked better than the last time. Both good news and not so good news. Still, the balloon dilation scope was ordered and the doctor who does such procedure had a cancelation for the following Monday. He was discharged with the instructions to return that day, have the procedure, stay over one more night and go home.
Upon return home in between these visits, the exhaustion was profound. We have done this so many times and no matter how long the stay, 1 night or up to 14, it is always glorious to be home and sleep in one’s bed without the sounds, lights, and interruptions that are unavoidable at the hospital. But what has changed is the recovery time from such visits. I used to be able to bounce back quickly. Even at times keeping plans I maybe had the evening on the day we returned or wake up early the next morning for a workout. But now things have shifted, and it seems that the recovery time from each visit is slower, with the utter fatigue lifting slowly like smoke dissipating into the air until after about 48 hours, I begin to feel some sense of normalcy return.
This first stay, and then the second stay the following week for the procedure even though only one night each over 2 separate weeks, were fraught with anxiety, triggered feelings of past traumas, and the rearranging of other commitments, appointments and responsibilities took a lot of me. Out of both of us.
There is always the mail to open, the emails and calls to return, and appointments to reschedule. Sometimes during the endless hours of sitting in the hospital I am able to concentrate and get the things done. I always have work to do for our foundation, one project or another taking precedent. More often though, I just stare at HGTV, NBC news or ESPN which my son keeps on the tv most of the time, half paying attention. I will glance at a magazine, or If I am feeling really ambitious, read a book.
After we got home from the second of these stays, there was an envelope addressed to me, written in pen, from my half-sister and her 2 young sons. I had recently sent them some gifts as they had moved to a new townhouse where they live in Florida.
I sent them gift cards for things they would need at their new place, and some fun ones for the boys to get what they wanted. They in return sent the handwritten thank you note. After throwing all the clothes, bags, and linens into the laundry and changing out of the clothes I had worn at the hospital, I opened the letter. They had written a lovely note but more heartwarming was my 9-year-old nephew had beaded a bracelet for me and spelled out AUNT STACY. I don’t know why but this made me very emotional. I stood staring at the handwriting and the bracelet scotch taped under his scroll of words thanking me for the Best Buy gift card. Was I feeling so depleted at that moment that a simple handmade bracelet by a child felt like the kindest thing anyone had done for me in a very long time? Yes I was. The tears continued well beyond the time that one might think was warranted for such a trinket. Somehow picturing my nephew Charlie conceiving of the idea to string those tiny beads together all for me, filled me with warmth that I needed exactly at that moment. It reminded me that life is still be sweet and precious no matter how relentlessly difficult and trying things are. Chronic illness, a pandemic, utter exhaustion, and through it all, there are still small important moments to be had.
