The Feeding Tube Extravaganza

Look at me!! Doing medical stuff! Never in a million years, did I think I was capable of this sort of thing!

What a week this has been! Please read that with thick sarcasm in your voice.

To start, Minke was scheduled to have a feeding tube inserted into his stomach on Monday. This is actually typical for ALS patients, and it’s also a good thing. Because … Minke lost A LOT of weight in the past 6 months and was not getting enough calories from eating food. The weight loss is obviously all muscle, but the result caused him to have extremely low energy. The doctor said he was malnourished, so we knew this day was coming.

For now, while Minke is still able to eat, the feeding tube will provide additional nourishment and calories. We can also put some of his icky-tasting medications in there so he no longer has to deal with swallowing those nasty pills. Not all of the meds can be crushed to go in the tube, but enough of them can be crushed, so it will make a difference. He will be getting a fiber-filled formula, not unlike the Ensure beverage that some of you may know about.

So … Monday was a total bust. They were short one doctor; the room where this procedure was to take place was occupied by someone whose procedure was taking longer than usual. His appointment was for 9:30 AM, and by 1 PM, he still hadn’t gone in.

Additionally, the bonehead who was putting in the IV took nearly an hour to do it with multiple pokes. Shrinking and disappearing veins are also typical traits of ALS. Doncha’ just love, love, love this fucking disease?

Anyway, Minke came home on Monday after an exhausting day of emotional and physical exertion. Thankfully, he slept like a baby that night. Tuesday, we laid low. And Wednesday, we were due back at the hospital by 6:30 AM.

I walked in there on Wednesday morning, ready for a fight. I didn’t need to be, thankfully. All went very smoothly. The nurse we had was EXCEPTIONAL! I love her. Also named Molly. What is it about these nurturing Mollys in my life now? I’ll take it. Molly was my paternal grandmother’s name. Never met her. But I’m meeting some amazing Mollys now!

AMAZING Nurse Molly!!!

Molly used an ultrasound to spot the vein for Minke’s IV. I watched the ultrasound and it was absolutely fascinating. Molly was a great teacher, and it turns out she’s the nursing trainer for outpatient surgery. She took her time, showed me on the ultrasound screen which vein she was going to go for, and lo and behold, with one poke and no pain, the IV was in. Minke and I breathed a collective sigh of relief.

The procedure went well; shorter than expected, and caretaker Molly and I went back to the hospital after the procedure to be educated on nutrition and, of course, how to use the feeding tube.

I was (and still am) nervous. There is a hole in Minke’s stomach. It cannot get wet. It cannot get infected. It CANNOT get any stomach acid on the skin!!! But Nurse Molly was a wonderful instructor, and as she taught me how to do things, Caretaker Molly videotaped all of it so I will have a constant reference.

I am reassured that once we get through the healing process, the use of the feeding tube will become routine, and one more thing we need to do to keep Minke healthy and with us for as long as possible.

This morning, DAY 1, Caregiver Molly and I worked together with what we’ve been taught, to have a somewhat successful first day; using the syringe and the feeding bag and flushing the tube and all the stuff we have to do. I flushed the tube a little too quickly, which caused it to leak. I panicked, of course, but I called my friend and neighbor Michele, who used to be an RN, and she, in turn, called her friend, Jamie, an RN, and we FaceTimed with Jamie, and successfully cleaned, dried, and redressed the wound. PHEW!!! I was not made for this medical stuff. There’s a reason why I was a theatre major! But here we are …

Minke resting comfortably. Or as comfortably as possible with a hole in his stomach. Feeding bag with formula in background.

And all during the craziness this morning, my poor darling Zelda had to be continually taken out for walks because she has diarrhea. Caregiving never ends. My poor baby girl. We went to the vet this afternoon, and we got some medication, and they are testing her for heartworm and other possible parasites.

I lost my shit at the vet. Started crying. It’s been so much, and the thought of anything happening to Zelda on top of everything happening with Minke was just too, too much.

The vet was wonderful. Empathetic. She said if Zelda does test positive for Heartworm, they will put her on medication immediately and she should be good to go. For now, she’s taking an anti-inflammatory and antibiotic to help with the diarrhea. I’m hoping she’ll be able to sleep through the night without having to go out repeatedly. I hope that for my sake and for hers. Right now, she’s sleeping and seems cozy and tucked in for the night. I love her so much. I hope she feels better tomorrow.

My sweet girl.

And finally, through all the emotional highs and lows of the day, was my loyal and patient rock; our caregiver, Molly. She is amazing, calming, steady, and keeps me from completely losing my mind. We are so grateful to her for going through all of this with us.

Amazingly, three of my playwriting colleagues decided to start a GoFundMe Campaign to help us keep Molly on as our caregiver. They launched the campaign today on Facebook, and I am overwhelmed with the support they have offered, as well as others who are responding to the call. I’m not good at asking for help, but there’s no way I can do this work alone.

And it’s often been said, to caregive for someone with any terminal illness, much less the beast that is ALS takes a Village. I never thought I had a village. Today, it seems, I do. In the worst of times, I find myself blessed.

If you would like to donate to the GoFundMe Campaign to help us pay Molly for her services, you can click here.

So grateful to my wonderful Molly!!