Faith's Recent Hospital Stays (Part 1)

Faith was hospitalized twice in September. The first time revolved around getting a UTI that was resistant to the antibiotics she was taking. The second time was due to the fact that she had ongoing fatigue and the doctors wanted to make sure the initial UTI was gone and also figure out why she was still so fatigued. 

Faith enjoying a beautiful September day

Recurring UTIs

Faith got her first urinary tract infection (UTI) in 2023. At the time, I would not have even known she had one, but she had a procedure done at the hospital and ended up getting really sick afterward. They tested for a UTI, and it came back positive. There were other things going on at the time, and she ended up in the hospital for 5 days. 

She had a few recurring infections after that and her doctor at the time thought she might have a neurogenic bladder, which sometimes happens with those who have cerebral palsy. Her doctor suggested Faith see a pediatric urologist. 

The urologist recommended urodynamic testing to see if in fact she had neurogenic bladder. Unfortunately, during the appointment, it was determined that the catheter used for the test was too big for Faith. There were no other options, so we couldn't complete the test.

Since then, I researched ways to prevent Faith from getting UTIs. I tried various types of cranberry supplements, D-mannose, keeping her hydrated, finding the right probiotics, etc. I know that for her, it can be hard to prevent them as she is incontinent and what comes out the other end can get into her urinary tract. 

Despite my best efforts at preventing them, she continued to get UTIs. Maybe she would have gotten more, had I not tried some of the supplements, who knows. Last year, there was a 10-month stretch where she didn't get one and I thought we had won the battle. 

Art in the Park was our only event this past 4th as she started getting sick soon after

Around the 4th of July, however, she came down with another one, and we had to make a trip to the ER. Unfortunately, the only way to test for a urinary infection is to draw a urine sample via catheter, which can only be done in the ER. 

Another UTI   

In mid-September, I began to notice how tired Faith seemed. She had gone to her day program on the 14th and an appointment that afternoon but Tuesday morning after sleeping for 12 hours, she still looked tired and pale. 

I took her to the ER and wasn't surprised when the urine sample came back positive for an infection. When they prescribed the antibiotic, I said no to cephalexin as that made her tummy very upset, even with food. The doctor opted for Bactrim instead. 

For the remainder of the week, she seemed to get better but then would regress. I just didn't think she was bouncing back very quickly, especially since she was more than halfway through her antibiotic. 

That Friday, she tried her best to go to OT and her day program. We actually made it to therapy, but once we got there, she just didn't have any energy. When we got home, we both ended up taking a 3-hour nap! Something seemed really wrong and I wondered if she had picked up a virus or something at the ER on Tuesday. 

New Test Results 

On Friday night, after she had gone to bed, I remembered to check her MyChart. I was shocked to see that her culture had come back with e. coli - ESBL. I had never seen the ESBL before and had to look it up. 

Basically, it is a strain of e. coli that produces enzymes that make it resistant to most antibiotics. It also stated that a consult with an infectious disease doctor was recommended. I was really upset that nobody had called me that day to tell me about these test results. 

The next morning while Faith was still asleep, I called the ER and explained what I had seen on MyChart. The receptionist spoke to a doctor, who recommended that I bring her back in. Thankfully, it was a pretty short wait before we went to the back. 

The doctor we saw that day recommended IV antibiotics and at least one night in the hospital. They also did lab work to check for kidney infection and to ensure the bacteria did not get into her blood. 

Overnight Hospital Stay 

After moving to a room, my mom came so I could grab some food and go home to get extra clothes, pajamas, Faith's feeding pump, her stuffed kitty, her tablet, blanket, and a few other things. 

That night, we didn't get to bed until past midnight because the nurses were constantly doing stuff. It did give me a chance to watch a late-night NDSU Bison game. But also, we were waiting to change rooms so that I would have a couch/bed to sleep on instead of just a recliner.

Watching a late NDSU Bison game in the hospital 

Somehow, we both managed to fall asleep, but then of course were woken up when the nurses had to come in and do all their stuff again. Around 6 in the morning, they needed to come in again to draw blood. Around 8 in the morning, new nurses came in to check her again. I just couldn't imagine what it was going to be like if we needed to stay another night. We were both exhausted! 

Shortly after that, the attending physician came in and said the IV antibiotics were a 7-day course. She said if we didn't want to stay in the hospital that long, we could put a portable IV into Faith's arm and she would go to the infusion center to get the remaining doses of antibiotics. 

I was fine with that plan and noticed that the IV antibiotics seemed to be helping. The problem was, they would not be able to put the IV in that day, which meant another overnight. 

After the doctor left, Faith became adamant about sitting up. It was hard for her to get comfortable being propped up in the bed. I took down the bed railing and sat her up over the side of the bed sitting next to me. 

When the nurse came in, I told them she wanted to sit in her chair. It took a while for a sling to get delivered, but the nurses were able to use the Hoyer to get her into her chair. It was just in time to watch our church service online. 

Faith watching TFL's live broadcast (that's my little bed in the background!) 

Another Opinion 

Toward the end of the service, another doctor came in and stated he was with infectious diseases. Faith did not really like being interrupted from what she was watching and said, "I don't want to see this doctor." He told her it would just take a few minutes. She then asked, "Are you a real doctor?" 

Thankfully, he laughed. He was very nice and explained that he believed Faith did have a neurogenic bladder and that's why she getting UTIs. He then explained that because this UTI was so close to the last one, it developed the ESBL to fight resistance against antibiotics. 

He did not think she needed to be on an IV antibiotic though. He said the one she was on was typically for kidney infections and he didn't want her to become resistant to that antibiotic, in case she developed a kidney infection later on and needed that particular antibiotic. 

He said we could switch her to one that was in a different class than the ones that she normally took for UTIs. He also said we should be able to get it in liquid form so we could put it through her g-tube. That also meant Faith could get discharged that day! 

When he asked if we had any more questions (I had already asked a lot) Faith said, "How long did it take for you to become a doctor?" He did answer her question! 

Medication Frustrations 

We got discharged in record time and headed to the pharmacy to pick up her prescription. Unfortunately, we could not pick up her antibiotic because it required prior authorization. I was a bit frustrated as she was supposed to get started on it right away. 

Relaxing at home in her new cozy jammies

The next day, I called the pharmacy and they explained that the medicine was being prescribed as a liquid, which is why it required prior auth. All we could do was wait to see if Medicaid was eventually going to approve it. After talking to them, a case manager from the hospital happened to call to check on Faith and I explained the situation with the medicine. 

She then called the doctor who prescribed the medicine and the pharmacy to see what else could be done. Apparently, there was a similar medication that came as a capsule that we could just break apart, add to water, and give it through the g-tube. I also learned the main problem with the liquid form of the medication was that it cost over $1,000 (compared to $85 for the capsule form!) 

Lots of Rest 

The next day (which was one week after our trip to the ER) Faith and I got ready to go to her counseling appointment, which she was adamant about going to, but just as we were leaving the apartment, she didn't look well at all. I canceled that appointment along with everything for the rest of the week so she could rest and focus on getting better. 

She was still sleeping for 12 hours each night. I had to interrupt her sleep however, because she took the antibiotics every six hours. She needed to take them with food as well, so I gave her a few ounces of her food through her g-tube followed by the antibiotic. 

It was kind of a rough September, hopefully October is better!

Even after being halfway done with the antibiotics, she still had not bounced back. I was concerned there might be something else going on. Last Saturday (September 26th), I called the number for a nurse that had been printed on her papers from her previous ER visit. She recommended that I take her back to the ER for further tests.  

To Be Continued...