This post is a continuation of our experiences since the end of March. The posts in chronological order can be found on the Timeline page.
Francis and I were really looking forward to things getting back to normal after the past several weeks, as normal as life could be with a new Crohn’s Disease diagnosis and a second child due this month. It didn’t take long for the train to normal to derail.
On Monday afternoon (May 7), we got to take a return trip to the ER by ambulance for Couper. Perhaps because of the exposure to all of the germs that Francis or I carried home from the hospital (and perhaps not), Couper spiked a very high fever during his nap and had a febrile seizure.
A febrile seizure is an incredibly scary thing to witness. I wish that I could go back and erase those few minutes watching the seizure unfold. It’s still painful to this day to see him like that in the movie reel of my mind. A febrile seizure doesn’t panic emergency responders or emergency room personnel as much as it does the parents of the child. But, we learned that a 911 call for a child having a seizure triggers a full alert to all available emergency medical responders.
I am very thankful that Francis didn’t panic along with me, although I know he was just as frightened. I am also thankful that Francis was home with me, and that neither one of us had to go through that alone. Fortunately, it is unlikely to occur again. Although, knowing this doesn’t do much to relieve the parental paranoia of something like this happening again.
Expecting that our troubles were now behind us, we drove home exhausted and hungry after about four hours in the ER late that afternoon and evening.
Back to real life, Francis was concerned about gaining back some of the weight he had lost while continuing to rest his intestines. After literally starving for a few days leading up to his hospitalization, his stomach capacity was incredibly diminished but his hunger was not.
We did our best to read what we could about Crohn’s disease so we could match Francis’ diet to the suggestions found on support websites. Francis did his best to eat as much as he could. Unfortunately, by Tuesday we started to notice that the grumbling sounds we had been hearing before his hospitalization seemed to be returning, along with the “bubble” pain.
On Wednesday evening, Francis told me that he would like to eat pasta with meat and vegetable sauce for dinner. Almost immediately after eating dinner things started to worsen. I put Couper to bed so that Francis could go to bed also. When I went to bed later that night, Francis woke up and proceeded to toss and turn well into the night.
In the middle of the night I awoke to find that Francis was no longer in bed. I found him on the couch in the family room, unable to sleep because of his pain and discomfort. He told me to go back to bed, that he would be fine through the night. However, we would need to take some action in the morning. I slept fitfully the rest of the night.
I called our babysitter, Melissa, first thing in the morning. She packed things for herself and headed to our house. When she arrived, we left for the emergency room.
This time, our emergency room visit was much shorter than the last. We were also fortunate to have a very helpful ER physician in Dr. Escobar. He prescribed pain medication upon our arrival, and Francis was able to get some sleep. Another CT scan was ordered, and Dr. Escobar came to see us.
Dr. Escobar told Francis that he was going to go ahead and admit him, assuming that was what Francis wanted. Francis preferred to be admitted because we both feared that he may have been sent home too soon after feeling better during the last hospitalization.
Dr. Escobar encouraged Francis to demand a colonoscopy be done in the hospital while he was there. He also counseled us that a hospital’s general rule of thumb was to get people out of the hospital as quickly as possible. We don’t completely disagree with this philosophy. No need to be around sick people once you don’t feel sick anymore. Dr. Escobar urged us to fight the common course of action and be sure Francis stayed until we were both confident he could go home and return to normal life.
While in the ER, we had the opportunity to consult with a colleague of Francis’ GI doctor at the Digestive Disease Clinic. We immediately pressed him to perform a colonoscopy as soon as possible. He was very encouraging and agreed that performing this procedure was the best thing to do to determine the proper course of action. The colonoscopy was scheduled for Friday, and prep began Thursday.
For anyone familiar with a colonoscopy, the worst part is the prep. First, Francis had to drink a jar of fluid (approx. 16 oz.), of which I can no longer remember the name. Then from a gallon jug (which appeared to be more like 3 gallons), Francis had to pour and drink an eight oz. glass of a liquid, called GoLytely (the irony of the name still strikes me), every ten minutes until the jug was empty. It takes approximately three hours to finish the full jug of Golytely. By the one hour mark, most individuals will have had their first round of colon blow. Now imagine doing this prep with what is a very sensitive intestinal tract at best and a partially blocked intestine at worst.
After drinking two-thirds of the jug of Golytely, Francis still had not realized the expected laxative effects and was becoming visibly bloated. His discomfort was terrible, and both of us feared that what had been a partially blocked intestine was now a fully blocked intestine full of Golytely with no where to go. The day was getting late and I needed to go home, relieve Melissa, and give Couper a sense of normalcy before bedtime.
I left the hospital afraid of what the hours ahead held for Francis. His nurse told him to stop drinking the fluid two-thirds of the way through, hoping to see movement before determining whether to finish the jug. Fortunately, the fluids eventually began to work and Francis began the regular trips to the toilet late that evening and into the night – a big relief for both of us.
The next morning when I arrived, the fluids had been doing their job, but the job wasn’t complete and the nurses weren’t satisfied that the appearance of the bowel movements was “clear” enough. So, the doctors ordered warm water enemas to complete the flushing of the colon. This was by far the worst of the prep experience – painful and uncomfortable for Francis, and heart-wrenching for me. I wouldn’t wish such an experience on my worst enemy.
Thankfully, the number of times the process had to be performed was not as many as originally planned and things were a go for the colonoscopy procedure. The patient care assistant wheeled Francis to a different floor for the procedure while I waited in the room for a call from the recovery room nurse telling me to come join him there.
When I arrived at Francis’ bedside, he was resting comfortably, and was much more alert than he was following his upper endoscopy. Unfortunately, the nurse failed to call me soon enough to give me time to waddle to the recovery room before the doctor came to talk to Francis. For reasons unknown to us (and anyone else who has been the patient for a similar type of procedure), doctors come to speak to patients about the procedures and findings while the patient is still too groggy from the anesthesia to remember, let alone comprehend, the information the doctor is giving. This is a process that really should be addressed by the medical community.
Upon my arrival, the nurse came and informed us that the physician who performed the colonoscopy had been called into an extensive procedure that could take several hours. I wasn’t likely to see him again. The biopsies that had been taken were “rushed” so the results could be back soon. “Soon” we surmised, was likely to be Monday since it was by now Friday afternoon. We’d come to learn that each person we spoke with in the hospital had a different definition of “soon.”
Surprisingly, the physician suddenly made a personal appearance at Francis’ bedside. He went through the procedure, explaining that he found a significantly restricted portion of Francis’ colon where the colon meets the small intestine. He was able to biopsy a portion of that area. He also found a tight portion of the colon, 40 centimeters above the rectum, where he had trouble maneuvering the scope. This difficulty made it impossible to obtain a biopsy. Looking back, we probably should have had some questions about all of these findings, but we also didn’t know the right questions to ask without all the information we would have later.
We moved back to Francis’ hospital room after seeing the doctor, and had an otherwise uneventful Friday evening together before I headed home to relieve Melissa and put Couper to bed. We made arrangements for Melissa to return first thing on Saturday morning so that I could be at the hospital with Francis all day in case the doctor arrived with results, as unlikely as we believed that would be.