Life Update – Hospital Edition

// updated July 27, 11am, at the end //

Most of the time when I sit down to write I have no idea where to start. This is absolutely the same thing.

Life doesn’t seem real. None of what I am about to type seems like our lives.

As of today, our lives are still in a weird limbo phase. How much do I say? How much is just TMI? Let’s walk that line together because I know so many people have questions, and well, we’re still waiting for answers.

In April, Jeff was admitted into the ER to get a wound checked out. It was something that had been hanging around for approximately a year and he was doing whatever he could to take care of it himself before that. He had his first wound surgery on May 1.

Upon discharge, he was feeling a bit better, but the underlying issues still seemed to be present.

We spent about 3 weeks at home working to get his antibiotics in order to help get him healed.

And then his leg started to swell up.

Long story (somewhat) short – Jeff’s lymph nodes were swollen, which lead to a lymphoma diagnosis a few days after his second ER admission on June 17. The oncology team stated that a good goal to have was to be home by my birthday – June 28.

A day or so after the diagnosis, he had a port placed for chemo.

That surgery sent him into the ICU and within hours, he was given eight pints of blood and two bags of platelets. What happened was (and still is) so hard to understand – an artery was cut during the port placement.

Jeff was rushed to a different hospital location where the surgery that saved his life took place.

Finding out that he had cancer was scary, but seeing him wake up with a breathing tube, unable to talk and move, was absolutely heartbreaking.

That setback has caused nothing but other setbacks.

Fluid has been drained from his lung area, twice.
His blood pressure and heart rate were all over the place.
He had to have ANOTHER port placed on the opposite side of his chest.
The amount of medications he’s having to take is out of control.
Kidney function is out of whack due to so many fluid being pumped through him during the emergency.
Walking and moving around had to take a backseat for quite a while, and he’s still working on that.
Eating became difficult.

I am beyond happy to say that Jeff has completed one round of chemo! There’s still a long road ahead with that, but the road trip has started.

In between all of these things happening, there was still the need for wound care – the original reason Jeff came to the hospital.

Once the artery was “fixed”, I had to keep reminding them about the wound. I was changing it three times a day at home due to the discharge orders, and yet it went down to once a day when he was readmitted to the hospital.

There seems to be a better treatment plan for the wound now that he’s in a bigger branch of the hospital, but damn it if this all hasn’t been over overwhelming in so many ways.

HOSPITAL RECAP:

4 wound surgeries (3 to clean, 1 to cauterize a vein that was cut, which lead to losing lots of blood)
1 biopsy surgery
3 fluid taps from the lungs (2 on left, 1 on right)
2 port placements
1 emergency artery surgery
2 blood transfusions (post chemo)
2 hospitals, two times each
4 ambulance rides (it was raining the night of the emergency, or it would have been helicopter)
6 hospital rooms + 2 in the ER
1 round of chemo
1 feeding tube

There are so many hands on this case and yet so many things left unanswered, STILL.

And the fact that there’s no lymph node biopsy result yet is the biggest mystery of it all.

Everyday is a new battle to be fought. And we’re here to win.

**I want to thank everyone who has sent well wishes/cards, checked in on us, brought Jeremiah’s ice, fed us, let me use their shower, let us borrow their blankets for an entire month, and just been there. The support has been overwhelming in the best of ways.**

July 27, 2018

Jeff is on day 40 of hospital life. I’m not even sure how that happened, yet here we are. We celebrated his birthday (July 25) as much as we could, however the next one needs to happen at home 🙂

There has been a diagnosis of sorts and there is a chemo plan in place, and a backup one if those meds don’t work. Apparently it’s a super rare form that isn’t really named, so right now, there is a made up one…kind of. [We’ll be keeping that on more of a private level, mainly because there’s so many questions on every part and really no definite answer.]

Yesterday started off alright and then once the meds started going into the feeding tube – clogged! I had a mini-major panic attack and started freaking out in the hallway. Tears and words. There is nothing more frustrating than feeling like you’re getting ahead only to be taken a quite a few steps back.

While Jeff handled having the feeding tube inserted okay, the last thing I want to happen is for him to have to go through it again because they want to try one thing and move on.

Thankfully the staff listened to our advice, per the ICU nurse who put the tube in, and Coke was used to unclog instead of having to change it out. {I did a high energy lap in the hallway to let the nurses and staff know it worked.}

Jeff does seem to have a bit more energy today and I’m hoping physical therapy will show their faces somewhat soon because I know he wants to get out of bed. And there’s a whole mess of people on this floor that are ready to celebrate him walking again.

On today’s plan is also a new wound cleaning system, so we’ll see how that goes. Fingers, eyes, toes, and ears crossed!

We’re waiting on white blood cell counts to go up, along with his hydration and numerous other going-ons, before chemo round two can begin.

Hopefully he can go home within a week or so. Until then, we’ve moved in here.