Life Update – Hospital Aftermath

As I write this Jeff is starting his fourth round of chemo. It seems like a nonchalant thing to say nowadays, and yet, whoa wtf is actually being injected into him? If you’re not sure what led us to this point, you’ll want to read that nightmare first.

*I know this looks like a lot of words and it is. There’s still so much that hasn’t even been touched. We would have to sit down for a few days to do that…and we don’t really want to do that.*

When Jeff was released from the hospital on August 18, 2018, he’d been in for 63 days. And apparently when your artery has been sliced and you’re laying in a bed 24 hours a day for 60+ days straight, your body is not the same.

What happened was a life reset for Jeff.

Waiting on discharge papers [8/18/18]
Due to the first round of chemo destroying his taste buds, Jeff wasn’t able to eat or drink much. Everything burned, even water. I’ll never forget him taking the smallest bite of macaroni and cheese and everyone practically celebrated. While it was great that a bite was taken, it was in no way providing value to the protein and 2,000+ calorie goals the nutrition team had set.

That lead to Jeff having a feeding tube inserted just days prior to his 34th birthday. After a week, the tube slid out. Due to Jeff’s weight (he was approximately 107 pounds when he came home) the doctors were contemplating putting in a semi-permanent feeding tube which he would have to keep in for about six weeks. Thankfully by the time the second tube started sliding out, Jeff was starting to eat more and it seemed as though the tube was just getting in the way. Upon review of the food logs I was taking and actually seeing him eat, the oncologist made the call for the tube to come out and ever since then he’s been a non-stop food machine.

One of many scans [7/9/18]
One of the biggest things that turned his eating around was the day he told me wanted our friend’s chicken tomato soup. Thankfully Lukasz prepared a lot of soup for us because it was in those days that Jeff would request 3-4 bowls a day. That soup ultimately led him to want to try other foods, which in turn led us to Uber Eats and Door Dash because oh.my.goodness I was sick of driving.

In between trying to make sure that Jeff had everything taken care of at the hospital – doctors stopping in, meds taken, physical therapy, wound care, the night shift nurse situation – he stopped eating hospital food all together and I was running around an unfamiliar part of town to get lunch and then stay with him until the majority of the doctors had come by. {There were no less than five doctors from different specialities during most of his stay.}

The hardest part of my day mentally was coming home. Nothing felt right. How could I leave him there, get in the car, and go home? Home didn’t feel like home. And it wasn’t. The hour+ drive each way was usually full of emotions, even when I was in the middle of singing out loud – tears, yelling, uncertainties of what was actually going on. {Side note: Mandy Moore’s Wild Hope album drove me back and forth 80% of the time.}

While the hospital was pretty easy to get in and out of, trying to find a parking spot in a garage had become mentally draining and overall exhausting. I’m not sure I want to know how many “don’t forget where I parked” photos are on my phone still. And putting that aside, the construction down Orlando’s main road, I-4, is completely anxiety-inducing, especially when you’re not the one that usually drives.

Why was I making the drive almost daily? To make sure that Chiker, our cat, knew that his people were still here and to gather anything that sold on eBay. Thankfully we had someone who could feed Chiks as needed. And when it came to eBay, no new listings were going up so any sales were surprises, and it was quite delightful to have a little money trinkle in. With Jeff not being able to stand on his own or even push himself up in the bed, there was no way for him to work.

You know what’s weird about living at the hospital and out of your own world for so long? You actually forget that other people are living their lives, working, and trying to pay bills. After two months of doing the exact opposite, coming back to our lives has been great, and oh so scary at the same time. Hospital bills, and their subsequent reminders, keep coming in and doctor appointments seem to be forever on-going.

About a week before Jeff was discharged from the hospital, he had a fourth thoracentesis to remove fluid that had built up on his lungs, partially from laying around. When the doctors were trying to figure out the best option, they decided to put him in a rehabilitation facility so he could get 4-6 hours of dedicated physical therapy a day for 7-10 days.

Physical therapy the day before discharge [8/17/18]
At first we fought the idea of another week away from home, but after lots of talks between us, we realized it would be best for him to build up strength. However, not having insurance and no open “charity bed” available at the facility made that impossible. So their next thought was an assisted living facility where he would get physical therapy 2-3 hours a day for the same time frame.

It was then that I immediately shut that shit down and we started the home discharge process. The hospital gave us his medications, a walker, a wheelchair, and a raised toilet to bring home. I am happy to say that Jeff is officially off everything on that list – including all daily meds.

On the front door when we came home [8/18/18]
The other part of coming home was home healthcare would come out for a few weeks to take care of the wound, physical therapy, and also occupational therapy.

Working on stepping up during physical therapy [9/19/18]
Those, too, are all complete and I am solely taking care of the wound. I have a terribly weak stomach when it comes to all things medical and yet somehow, I get such pleasure in seeing that it’s healing and getting smaller. After this, I am retiring from wounds, including seeing them.

Wound vac supplies

I learned way more hospital terminology and nursing procedures than I ever wanted to – I now know how to successfully change the dressing on a wound vac, change sheets with a person laying on them unable to move, silence a beeping IV machine – but we did make some friends, who we are still updating. Nurses and techs can really make or break a day/night and feeling that we had a handful of people on our side most days made things slightly easier when I needed to go home for a couple of hours.

After Jeff’s third round of chemo he had a PET scan which allowed the doctor to pass on great news that one of the masses had resolved and others were much, much smaller. At this point, Jeff has two more chemo appointments and then a follow up PET scan. If that scan shows what the doctor thinks it may, Jeff could be done with all of this before the end of the year!

After the PET scan results [10/10/18]
When Jeff came home I was having to help him off the couch and in less than two months he went from a wheelchair everywhere to walking the grocery store pushing a cart to walking the hospital without assistance to driving. He has gained close to 30 pounds and is feeling (and looking) more like himself daily.

Birthday dinner for both of us, months later [8/22/18]
With everything that has happened in these last few months, Jeff’s strength and willingness to fight for his life while getting poked multiple times a day, with way too many scans, x-rays, and surgeries to even think about, is something I greatly admire.

Napping after an appointment [9/26/18]
No matter how stressed things may be now, I am beyond happy that we’re home.