It’s February 22, 2018, exactly 5 years to the day after the first surgery when my son Lowell’s Crohn’s disease related complications escalated, and we are currently in the same hospital room –4013 — in the north tower of the pediatrics floor at Cedars-Sinai Medical Center, coping with yet another unexpected, Lowell only, out-of-the-norm, confounding medical situation.
Complications such as joint pain, eye, issues, rashes, bone density concerns and more, often accompany Crohn’s disease or ulcerative colitis, known as inflammatory bowel diseases or IBD, but there are also issues that arise that are specific to each person’s disease. Lowell has a gastronomy tube (G-Tube)which was placed last June in order for him to get extra calories. This feeding tube delivers formula from a button that opens up directly into his stomach that you place tubing into, and hook up to a pump. You can read about the surgery to place this tube here, which went awry, and again, as has so often been the case with Lowell, the surgeons told us this RARELY happens. Anytime a doctor or surgeon says the word “rare”, or “unlikely”, or “I have hardly ever seen this”, it means nothing to me because those things can and do occur no matter how uncommon, and more times than not, they have occurred with Lowell.
Since returning from our 6 weeks stay in Palo Alto 13 days ago which I wrote about here, we have spent 8 nights at Cedars Sinai. And while the reason for this stay is not due to what you would typically call an extra intestinal manifestation, it is just another of the many complications Lowell has experienced from having Crohn’s disease.
Slow growth was the reason we made the decision to get the feeding tube last year. After years of using a non surgical NG tube that he was a champ at doing, like many patients, it became too hard to continue the nightly insertions so the surgical G-Tube offered a much easier way to hook up the formula that provided him the extra calories he needed to grow. He had hovered around 75lbs for years, warranting a red alert from the computer system at doctor’s visits. In the 8 months since it was placed, he has gained about 20 pounds and grown a few inches.
Two weeks before we completed our stay at Stanford, Lowell started having pain around the inside and outside of G tube site in his stomach. We saw a surgeon at Lucile Packard Children’s Hospital, in Palo Alto and also had to make a trip to the ER one night for pain. The Sanford ER was not much better then Cedars, busy, people sick with the flu everywhere, small waiting area, long wait to be evaluated. We changed the tube (it sounds more complex than it is to replace this tube but it’s not, we did it ourselves after getting the next size up) because he had outgrown the smaller one. Things got better, he was back at the program the next day, swimming, doing PT and OT and the pain subsided. We finished the program the following week. At our last Care Conference with the pain team, Lowell received high praise, positive feedback for his participation and motivation, and we had a plan in place. Upon our return for him he was ready to go back to school, continue 30–60 minutes of physical activity daily, and keep on a structured schedule with the providers we had been seeing already here in Los Angeles.
Within a day or 2 or our return to our house (let’s be real, mostly we were happy to reunited with our dog Ruby, and NBC on TV because the Olympics were starting, and for some reason we didn’t get that channel in our room at the Ronald McDonald house) the tube pain returned. Three nights later we were checking into Cedars for pain management and to figure out what was causing pain. Lowell had some tests, nothing obvious showed up. We went home hoping the pain would go away like it had before, but the pain continued and three days later we were back at Cedars, admitted again. He received a regional nerve block that didn’t help, ordered a new type of tube and did some other tests to see if we could figure out the problem.
Meanwhile, he missed more school. Many appointments we had set up upon our return had to be canceled. Things felt the same as before we went to Stanford. Had all of our progress been lost with this acute unexpected issue that was outside of the normal pain that he had targeted and learned how to mange with the techniques he had so willingly learned just a few weeks ago?
That remains to be seen once this episode passes.
On day five of the second hospital stay, they found inflammation in the G Tube tract that could be infectious or possibly a flare of his disease localized in the G tube site because Crohn’s can occur anywhere in the digestive tract.
Antibiotics were started and the new tube arrived (after waiting four days because it had to be special ordered). The surgeon came to his bedside and quickly yet painfully switched out the old tube for this new one which has a different mechanism. The goal: this acute pain to subside so we can return home (Ruby missed us, though she was well taken care of at our kind, dog loving friend’s house).
At the hospital, in this room that is one of the nicest and does not have the chaotic art that many of the other rooms on the pediatric floor now are subject to, so many things are the same as in the dozens of times we have been here.
1. I didn’t buy a parking pass which costs $30 for the week because like many other stays before, I thought we would be here one night. The next day I still thought we would be leaving and then it became a lost cause and I spend $10 each day on parking.
2. This particular room, though as I mentioned has simple white walls, is larger than most, has 2 windows, and faces the better side of the hospital, is a PTSD trigger for all of us. Scary things, neglectful nurses, and the news that the first surgery on February 22nd, 2013 had gone wrong were delivered to us in this room.
3. Other parts of the hospital, certain nurses, residents or doctors, can also evoke PTSD like reactions unexpectedly from any of us at any time we are here as snippets of memory arise from the initial trauma 5 years ago, and the subsequent ones that followed.
4. I miss the fresh air but when I go outside, I feel disconnected from others, from the world still moving around me.
5. We generally don’t get the hospital food but nutrition (as they call it-that could be a whole other rant some day I will write about) comes in or calls the room daily asking for our meal order. I am not hungry or conversely I am starving, but nothing seems appealing. I go to the in house Starbucks and get a soy latte. Lowell has certain things he wants to eat if he is not NPO (currently he is allowed to eat and he is getting his tube feeds). Instead of the hospital provided meals, we get Postmates, or I walk somewhere nearby, or Sam or family member or friend brings food.
6. I miss exercising (the idea that I will go out for a quick run or bar class up the street-I still entertain the thoughts, but too many reasons why it doesn’t happen), but I do what I call my hospital workout-50 push ups, tricep dips, stretches, and lunges in between the chair that turns into a bed and the hospital bed and IV pole.
7. Too many people come in, all with good intentions or just doing their job, but require too much of our precious energy that is depleted more and more with each passing hour and day.
8. Not enough service dogs have been here this time but one named Teddy and then another named Madison finally showed up.
To be fair I have noticed improvements over the 5 years since we became frequent visitors to the hospital. One night Lowell and I praised our night nurse as she was getting his meds ready, and told her about the positive things we have noticed. Besides the aforementioned stress inducing paint job in some of the rooms, and other questionable design elements, there are small steps being made towards more patient centered care. The nurses and residents allow for shared decision making and show more respect for families and children, and value our knowledge of our own health situation. The Child Life Specialist who is there to support families, provide fun things and distractions for kids, offers an array of activities while also respecting that we may not want to engage in them. There is a parent council that listens to feedback from families. I do notice that the quality of nurse care is much improved and all of them genuinely seem to care about the child’s needs and treat him or her very respectfully.
The long days of residents, pain team, surgical team, his regular doctor, medical tests, schedule of medication administration, volunteers, and whomever else coming in and out of our room, the nights where sleep is nearly impossible, and the often elusive answers to Lowell’s unique medical occurrences seem never ending, certainly takes it’s toll on us. Then discharge is talked about, decided upon, home plans are made and we leave. (The $10 daily parking fee gets reduced to $5 on discharge day!)
The second visit since our return from Stanford was for 5 nights. At the hospital we went for frequent walks around the halls, did some easy stretches every day, and the Olympics provided entertainment while the regular news was pretty abysmal. We went home with antibiotics and steroids on board. Lowell can more easily practice his mindfulness, hypnosis, biofeedback, etc., get comfort from hanging out with Ruby, and there is simply nothing like sleeping in your own bed after a hospital stay.
On the way home from the hospital, I made an observation about something that occurred during our hospital stay, I can’t remember what, it is not important, but he said, “yes mom, you were right about that.” And I said to him “you know Lowell, one of the best things that happens between us is when one of us makes a suggestion or comment and instead of arguing, the other one concedes the point and says yes, you were right about that.” We both agreed that in those moments we are stripped of ego, the need to be right, and we find those little bits of strength and the hope that the new day will offer even the smallest positive movement in the right direction. We hugged. Lowell went to hang out with Ruby who was waiting for him on his bed.
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