Wednesday, April 25, 2012

Day 92

The Ordeal...

Here is a small narrative of the past 36 hours, which I will assure you from the beginning, has a happy ending.

Tuesday, 4/24

10:00am: I confirm after an hour of staring at mom's NG tube that it is not working. After close analysis of my constant companion, the GOMCO pumping machine, I discover that the problem lies not with the position of the tube from my mother's end (a solid relief since we've learned that means a trip to the ER),  but in fact from the manufacturing end of the machine. No suction.

10:01am: I call the hospice hotline to report the problem and I am assured by Martha, the lovely and apathetic Nurse Mgr., that a new machine will arrive via Apria Healthcare soon.

2:15pm: Apria Healthcare delivery arrives with a new box, which they switch out for the old one. Alas, it is still not working. I am then told by the driver that it takes a while to get the thing working. We wait. It's still not working. He calls whomever with his walkie-talkie and he is advised that it will take an hour to get started. This is not so,  I tell him. I am quite familiar with this machine after 2 weeks of use, I explain, and it should be working. It takes an hour, he says. Please sign here. I sign, more to get rid of him than to appease him.

2:45pm: I call the hospice hotline again and speak with Martha, who is again understanding, and she tells me that a nurse will be out to help with the machine. She is also going to ask Apria to bring another machine out just in case.

5:00pm: I receive a call from a different Apria driver who tells me he is supposed to bring a new machine out though he confesses he's not familiar with the device and then begins to ask me inane questions about a machine he doesn't himself understand. I ask him not to call me, but rather to speak directly with hospice to arrange the delivery. What's hospice, he asks. I breathe in. I breathe out. You know, I think, I've been waiting for a reason to let off a little steam. Now's as good a time as any. After he fails to grasp my explanation of hospice, I hang up.

5:30pm: I call hopsice again and ask them to take over full control of the situation as I am losing patience. All this while my mother is not getting drained.

6:00pm: I get another call from Apria.  The same guy. He doesn't improve. We argue. I hang up again.

7:00pm: I get a call from hospice (it's Margaret now) explaining that they've spoken with so and so's supervisor and a new device will be delivered. I also hear that the hospice nurse has been delayed by an urgent patient and will arrive as soon as she is finished.

7:45pm: I get a call from Apria again. Different tone this time. He's very sorry. He's leaving San Jose and picking up the machine from Menlo Park.

7:55pm: I call hospice again. Again, Margaret is a joy to talk with. She asks how I'm doing through all this. I tell her the truth. She understands. She then offers the first practical solution to helping my mother in the moment that I've yet heard: if you feel up to it, she says, I can walk you through manually draining your mother's tube in an effort to relieve some pressure. Agreed. Success. Relief.

9:00pm: Apria calls from Menlo Park asking for my address and directions. Really?

9:15pm: Chris, the hospice nurse calls. She's in San Jose. She needs directions. This takes far too long. She's on her way.

9:30pm: Apria arrives with the machine. I leave the room. John stays and it's a good thing too, because after the Apria guy breaks the new filter for the new machine, John realizes that the old filter is the problem... not the machine. It's water logged. So, we've discovered the problem, but again are left with no solution. I'll put an order in tomorrow, the driver explains. It should get here Thursday. No, I say (I'm back). She needs it sooner it's urgent. He repeats himself. I sign his paper. He leaves.

10:00pm: Just as Apria is leaving, the nurse pulls in. I explain about the filter. I explain about the machine. She is thorough and agrees it is not working properly. She takes mom's vitals. Is content she's in no immediate danger.

10:45pm: Mom is finally able to sleep.

Wednesday, 4/25

9:20am: Martha from hospice calls. She has reviewed the notes from last night. She apologizes again. No, it's still not working, I tell her. A filter in the mail on Thursday, I tell her. No, it's not acceptable, I agree.

1:30pm: Apria arrives. New driver. He brings 2 filters. Could you set it up please? It takes an hour to get started, he says. That's incorrect, I repeat and repeat. He sets it up. Let's test it, I suggest. Marvelous! It works - and we didn't have to wait an hour!

2:00pm: I hook mom up to the machine. It's not working. I wait. I fuss. It's not working. John comes home. We wait. We fuss. It's not working. I breathe in. I breathe out. Leave it alone, mom says. I'm fine. It's still not working. A little morphine. A pull here. A tug there. A little suction. A little pleading from my soul.

3:00pm: A little of John's magic touch. It's working! We put mom to bed, where she rests now. In the comfort of a functioning NG tube. I told you... happy ending.

I'm only sharing now, because... well, because I needed the therapeutic exercise of getting this experience on the outside of my being. Also, although this was a rare complication, it is the stuff of our everyday. I'm not complaining, I'm communicating. So, please forgive us if we're not quick to respond. If we seem frazzled or over-exhausted.

I feel like a new parent. Clumsy, unsure, restless and bumbling. All of your encouraging words have meant the world to me. To us. Please know that even if I don't respond right away. I'm reading. I'm appreciative. And, most importantly, I couldn't do it without you.


  1. Thank you Jess. I love you and I love that you and Benj are there. You and all are in my thoughts constantly.

  2. CRAP ! As my mom would say. Its only through the grace of God that you made it through those hours. Glad that part is are now an ng tube expert! I'm breathing for you over here and throwing a temper tantrum on the floor for you. Love you lots

  3. Oh my Jess, so get it, been there, nightmare and panic on the caretaker's insides and all the while and ALWAYS in hine sight, God's got it handled. Even when we don't get it, especially, when we don't; reminder we are not in control, He is. In the darkest of times, it's what we must assuredly know. So very crazy making here on earth, gotta know all of this is temporary for all of us here.
    Auntie Darla sends much u, Ben, Josh, and dear Johnny, everyone in my second family there.
    XO to my BFF and ever.

  4. You're doing a great job Jess - DON'T TAKE ANY CRAP FROM PEOPLE WHO DON'T KNOW ANYTHING, AND DTRY TO COME OFF AS KNOW-IT-ALL'S!!! God bless you for your diligence.


  5. It sounds like you are fighting hard to advocate for your mom when faced with people, machines, and systems that are incompetent and ineffective. They are messing with the wrong woman! Keep fighting, keep writing it out here and getting it outside of your being, and be assured that even your most clumsy caretaking is a beautiful, powerful, and exactly what is needed in the moment.

  6. Dearest Beth, We are all walking the journey with you through your communications so feel free to vent. It gives us out here some purpose as well. You are a love and working so hard to care for your mom. It's such a test of your strength... and so hard I'm sure. Stay strong little one, and know that you are being loved from afar. Please give a big kiss to your Mom and to John from Michael and me. Love Doreen

  7. Jess, You are doing an amazing job and I know your Mom appreciates every battle you take on for her comfort! Most importantly, your sweet, strong spirit is an encouragement to her. You are not alone and I hope you write more about your lets me know how to pray for all of you! You are loved completely. Hugs and Kisses to you and all the family! Kathy

  8. Very hard to deal with, but sounds like you were able to stay strong, make them tow the line, and hold on to your faith. Though it is tough, you are being an amazing blessing to your mom. Praying for you.