It gets easier, but sometimes it’s still hard.

I came home from Cleveland Monday night 5/11, wrote up a blog post summarizing all the big things going on and slipped in a few sentences and a update about Fulton being sick. I so desperately wanted to believe we had a handle on things, because in a lot of ways, he seemed to be doing really well. He was eating and in a cheerful mood. But he’d had a junky cough for more than a week. When a 103 fever developed, his oxygen dropped below 90 and his heart rate skyrocketed Tuesday night, I knew it was probably pneumonia. But with Tylenol he stabilized. I got him ready Wednesday morning and he seemed better. His stats weren’t so terrible. Did he really need to go to the Children’s Hospital of Philadelphia??? Since they started construction on a new tower a little while back, there’s no where for us to park our wheelchair van since the oversized parking only goes up to 8’2″ (considering many handicap vans are taller than this, it seems a huge injustice to the families they serve). Tony was in his last week of work at his company trying to wrap things up; did I really need him to drive us 45 minutes downtown (in Philly traffic) and drop us off, then possibly need to pick up back up if Fulton didn’t have pneumonia? We’ve never had great luck with Fulton at the local hospital, even though they claim to be a CHOP partner. They usually panic and send us to CHOP. But Fulton felt good; he wanted to try the local ER and so I drove us there and parked in one of their numerous handicap parking spots.

A chest x-ray revealed pneumonia in his lower left lung. Not terrible pneumonia, but still pneumonia. And once on their monitors, his stats again looked less than ideal. He was put on oxygen. Fulton quickly earned an admission and ambulance transfer to CHOP. These things take FOREVER and so, Tuesday night around 11 p.m., about 12 hours since we arrived at the ER, he was given a room at CHOP.

The first few days on antibiotics did not work as expected, and so he needed an ultrasound of his lung which showed fluid around the pneumonia. They switched up the antibiotic. Through it all Fulton remained in good spirits. Each day we hoped he’d stabilize enough to go home. I went home Saturday morning 5/16, Tony went in with Fulton and in passing he brought Fulton’s wheelchair to CHOP (it had been left at the local hospital because power wheelchairs don’t go in ambulances.) In frantic texts and phone calls we had to figure out what we were going to do Monday; the day Tony needed to go into the office for his new job. I went back to the hospital Sunday night, and thankfully I was able to line up one of our respite caregivers to be with Teddy during the day. Edie would be home, but she works third shift right now, and sleeps during the day. Plus, there are some aspects of Teddy’s care she cannot do. Once we learned Fulton would not be discharged Monday, Tony’s parents drove up from Virginia to help. Tuesday morning 5/19, Fulton was finally doing well enough to come home. Tony’s dad drove our wheelchair van to CHOP to pick us up. Tony’s parents stayed until Thursday; they’ll be back in a couple weeks for Fulton’s graduation.

Honestly t’s been a lot. Fulton has been sick since May 4. It’s been three solid weeks of breathing treatments every four hours during the day as well as help with the cough assist machine on demand. Since coming home from the hospital, I’ve had six alarms set on my phone to make sure I don’t forget anything. Being in the hospital was a bit of a break since the nurses do so much. It occurred to me today that this is the first time in probably ten years we’ve had a major illness/ hospitalization and not had nursing care at home and the boys in school. Tony is back in the office two days a week and not nearly as flexible as he once was even when he is at home. By this weekend, I felt an overwhelm that has not overtaken me for many, many years. I took it out on Byron’s heavy bag in the basement and allowed myself a good ugly cry. I felt better afterwards, but its hard to not be frustrated with myself for not being able to “offer it all up” and be a ray of sunshine while helping Fulton through his illness. I am definitely not walking the walk right now.

I’ve started questioning whether or not I can really pursue a Masters Degree later this year, or hope to work even part-time as a history professor in the future, because at the end of the day, if either Fulton or Teddy is sick and needs to be hospitalized someone has to be there with them and while I hope that someday that person can be their spouse, for the forceable future it needs to be me, and Tony needs to work. Even though I’m hopeful we’ll be able to get more home health aides in later this year, HHAs aren’t going to manage round the clock sick care and sitting bedside. If I was in a Masters Program, I would have gotten zero work done the last few weeks. I can usually do one German lesson every one to two days. I’ve done two since Fulton got sick. These times of illness just drain me of everything.

Tomorrow, Fulton ends his antibiotic. His numbers are better, but he’s still coughing and bringing up junk. I’m reaching out to pulmonary to figure out next steps. It’s not outside the realm of possibility for him to need to go back to the hospital. I just can’t even imagine. There’s also insurance “issues” as Tony changes jobs and that’s stressful when Fulton is sick. We’re having a very cool and rainy Memorial Day weekend here and I think that captures my mood perfectly. Rather than getting excited about warm weather and summer fun and sitting outside, I feel stuck inside peering out into the gloom, yet somehow also internalizing it. I know we’ll get through this, but I’m not walking through this mess all that gracefully, even though I know it’s not even the worst illness we’ve ever dealt with. It gets easier, but sometimes it’s still hard. I want to be stronger than the hardest times and its difficult to accept when I’m not.

Prayers welcomed for Fulton’s continued improvement.