November 22, update to friends and family: “Praise the Lord, Joey is done with dialysis! His kidneys are producing urine and lab numbers are almost back to normal!… The plan for tomorrow is the removal of the tunnel catheter (the one they used for dialysis), and then Joey is headed to the LTAC (long-term acute care) hospital!”

Joey finished with dialysis. He went from producing no urine to outputting so much urine that it caused his sodium levels to become elevated. Thankfully, the solution was simple – IV fluids. Praise God for simple solutions.

We’re Moving On

I remember, early on in this journey, I envisioned Joey coming home. I would anticipate doctors coming in the room and telling me that Joey would soon get to go home. But then I’d look over at his sedated body and realize that wasn’t happening.

That’s how I felt for much of this journey- always waiting. Waiting for healing, for God to answer our prayers, for answers to why this is happening. Waiting to see if Joey would come home. It felt like forever. Then, finally, one day, when I least expected it, I learned we were moving on.

At first, I was a little confused. Joey was still in a fragile state. He was still on the ventilator, not altogether in his right mind, still using a feeding tube, very weak, and unable to walk. But Joey’s doctors assured me they felt he was ready to move on to the LTAC. They encouraged me to visit the LTACs and choose which one we wanted to send Joey to.

A Bittersweet Ending

I had mixed emotions. It was like a part of me didn’t want to leave. I know, that sounds crazy and contradicts all I’ve been saying this entire time. But the thought of moving somewhere I had never heard of before, was unsettling.

Sure, I was in awe of what God was doing. And I was amazed that Joey’s team believed he was ready for this. But the nurses we had were amazing. I was comfortable with them. I trusted them. Nonetheless, Joey’s doctors and team brought reassurance.

They informed me that moving forward, Joey’s care would be aggressive at the LTAC and recovery would be slow. The typical rule for recovery time was one week for every day he was in the ICU. That sounded like a looong time.

I remembered what one of our nurses said. “Joey’s a fighter. Not many people who get as sick as he was, make it.” He was right. Joey was still fighting and I knew he wasn’t going to stop till he made it home.

Joey Moves to the LTAC

November 23. After forty days in the hospital, Joey was transferred to the LTAC down the street. Since he was transported late into the evening, I was unable to be there as he arrived. But I was there the very next morning when visiting hours began. Visiting hours started much later at this hospital, and truth be told, I wasn’t upset about it.

I wish I could say that it was smooth sailing from here on out, but I’d be lying if I did. We definitely had some “bumps” during this next part of our journey. Some bumps caused panic. Some caused frustration. And spoiler alert, some bumps caused Joey to pass out which made me want to smack some people upside their head.

If you saw the video in the previous chapter, you remember how eager Joey was to have a hot-dog and a coke. He forbade staff “…not to feed me that crap anymore.” Understandably, he was not a fan of the feeding tube. I suspect it was due to a couple of occasions when he vomited profusely following a tube feeding.

As I visited with Joey in the new, extremely small, hospital room, nurses and techs came in and out. Most of the nurse’s were traveling nurse’s. Communicating with some proved difficult. Either their English wasn’t very good or their accent was so heavy that I couldn’t understand them.

Thankfully, there were no issues with Joey’s doctor. He was wonderful. The first time we met with him, he thought he had the wrong room. He said according to Joey’s medical reports of how sick he was, he was surprised at how good Joey looked and thought there was a mix up. He said, “Joey is making an incredible recovery!”

The Treatment Plan at the LTAC

Staff explained the plan for progression going forward. It was as follows:

1. Tolerate being off the vent longer, using trach collar with speaking valve. Since the valve makes his breathing muscles work, his goal is to be on it longer with good oxygen stats without fatiguing and having to be put back on the vent to soon.
2. Then “cap” the trach and use a cannula. Tolerate this over a period of time.
3. Then eventually remove the trach.

Cue Bump Number One

November 24. Staff came to prepare Joey for his swallow test. While staff was getting Joey ready, they kept running into the issue of his oxygen dropping. If his oxygen wouldn’t stabilize, they wouldn’t do the test, which meant continued tube feedings and more delicious ice chips. 

After many failed attempts and multiple devices, they gave it one more try. In the process they ended up “capping” the trach, (See #2 above) and put a cannula on Joey. We weren’t at this stage yet – but God! God in His miraculous ways, said differently.

Doctors said that since his trach got capped, if it remained capped for a few more days, Joey would be done with the vent for good.

Cue Bump Number Two

With his oxygen stable, Joey was wheeled off for his test. Shortly after, they returned and began transferring him to his bed.

Nurse number one, brought Joey close to his bed, transferred him over and stepped out of the room to retrieve something. Meanwhile, nurse number two takes the chair Joey was in and leaves the room with it. I’m standing at the foot of the bed, watching.

As I’m looking at Joey sitting on the bed, I notice his oxygen tube. The end of the tube was lying on his bed, not attached to anything. As nurse number one walks back in, I say, “Joey, you’re not attached to any oxygen.” The nurse looks around quickly and says, “Where’s the chair?!” (Cue my own little internal heart attack!)

The chair held the oxygen that Joey was attached to. When they sat him on the bed, the other nurse disconnected the oxygen and took the chair away, taking the oxygen along with it. Thankfully, they quickly hooked him back up to oxygen in the room. Whew!

Hold off on the Hot Dog and Coca-Cola

Joey had trouble with his swallow test. Because of this, he was at risk of choking, so he was only allowed soft, moist food and thickened liquids. It wasn’t the hot-dog and coke he wanted, but it beat ice chips; one more step to be thankful for.

While it only happened a couple of times, I sent Joey’s meals back because they didn’t follow the orders that were in place to prevent him from aspirating. I reminded the staff of his limitations and pointed to the orders on the wall. It was frustrating. I felt I couldn’t depend on them to make sure he wouldn’t choke. And poor Joey, well, he was just happy to eat and wouldn’t remember to tell them.

Thursday, November 25 was here, Thanksgiving Day. It was sad to know we wouldn’t celebrate as a family like everyone else. It was depressing to see everyone going on with their lives while ours seemed to be at a standstill, stuck in circumstances we’d rather not be in.

A Time to be Thankful

Rules and regulations at the LTAC prevented us all from being together for Thanksgiving. Unlike the ICU, which allowed one visitor at a time, here, only one person a day was allowed. We decided I would spend the day with Joey while our kids would spend the day with my parents. It was hard not being together, but it helped that our kids FaceTimed us while at my parents house.

Celebrating the holiday was different. We weren’t gathered all around the table for a turkey dinner. There would be no board games or pumpkin pie to share. Instead, Joey had his “special” hospital food as I sat and kept him company. Fortunately, my kids had my mom and dad. It was different. Life was different. But there was so much to be thankful for, and we were.

I believe a conversation between Joey and a staff member sums it all up…

Staff: Did you come in on the vent?
Joey: Yes
Staff: And you're already off the vent??
Joey: I've been off for almost three days
Staff: We have magic oxygen!
Joey: I have a great God!

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… to be continued.

While we experienced a couple of bumps that week, one incident truly took our breath away. You can read it, here.