Testing the Ol' Tubes

Good afternoon from the 7th floor of Orlando Health in downtown Orlando. Yesterday was a super rough day for the Zaner. For those who didn't see the FB post(s) yesterday, I'll sum up the last 24 hours here.

A CNA turned up yesterday morning as usual to give Zane a bedside bath. She comes 3x a week and we adore her. When she rolled Zane over to clean his back, his PEG stomach feeding tube fell out. This wasn't painful for Zane and these things do have a way of popping loose. We also have been feeling like it wasn't operating correctly; leaking and well, just not "right." We called Vitas Hospice and they arranged for a medical transport to the hospital. So all was well.

This is where things go a bit sideways. When we got the the ER and waited for an attending physician to look at Zane, the hole for the tube was quickly closing. Turns out they start to heal themselves rather quickly, especially since Zane's only had his since May. So, the process of this physician trying to reinsert a new one on a track he couldn't find was difficult and he attempted twice with no pain meds for Zane. It was bloody awful. Zane jus

t about came off the bed, moaning and groaning and it was very hard to watch and hold his hand through. They gave up and administered morphine in his muscle via an injection some time later and tried again. Still no luck. So I went out to make a a call and while I was out there, they tried again and success! An Xray was taken and things seemed to be all in order. Yay!

But, celebrations came early. As I attempted to get his meds in the new tube, I was just making a mess. Everything was flying out of the tube like Old Faithful. It wasn't going well. I called in the nurse and she tried putting in water and she also had no luck. Damn. Transport was already there to take us home and I had to call them off. Got a 2nd Xray and this time it was determined that it WASN'T placed correctly. Brought in the operating team and Zane went into surgery for a new tube feed system late last night. Surgeon came out just after midnight. Things went well, but she did warn me there was a lot of scar tissue in Zane's stomach from the two previous surgeries (PV shunt and PEG tube insertions). So Zane will be uncomfortable for awhile until this heals. What a freaking ordeal. It seems we see progress, then come crashing backward. I'm just glad I tried working the tube before taking their word for it and getting sent right back to hospital once we'd gotten home.

So we are still here and hoping to be released today, maybe tomorrow. Just in time for a hurricane and we aren't moved fully into the new place yet. Gah!

And I won't get into the whole bit where I was left and forgotten about in the OR waiting room and woke up 2 in the morning not knowing where Zane was and having security want to throw me out for being there after hours and all the rest of it. I wasn't able to stay overnight but they did finally let me see him before I went home at 3am. We'll just skip all that, shall we?

Remember, everyone! Please do your part to #MakeZaneBetter That can be ANYTHING. Prayers especially.