Inaccessible

Talk about crappy weekend.  I think I have a shit time with nurses.  I really do.  The thing is, L is a nice person, but nice doesn’t always mean skillful or skilled nurse.  She’s a nice person and I am starting to wonder if this is just the nature of the beast when you have a home nurse.  Are home nurses all just a bit…  Lazy?

The first week went fine.  I got my medicine and fluids and everything went great.  At the end of the week, we needed to get my needle changed out.  The nurse was teaching us proper technique.  Now, Master has seen it done a kajillion times before (slight exaggeration).  I have seen the tools all laid out before, but I haven’t seen how the needle itself is inserted.  As the person with the port in their chest, I am well trained to look away.  I am not allowed to look down because I’m not supposed to be breathing on it as that could lead to an infection.  An infection in your central line is horrible.  Master Pravus, on the other hand, has seen the exact maneuver a lot of times.  It’s not exactly a straight stick.  A Huber needle has a little bend in the end so it isn’t the same thing as a “normal” IV line.  At the end of the first week, L got it changed out with no big deal.  First needle, no problem.

All week long I was able to flush my line with no issues.  I put in the Heparin.  I disconnected my lines.  I had zero problems.  L came back over at the end of the week and she disconnected me only because we needed to change the needle out again.  You must do this.  Every seven days the needle has to be changed, this is not up for debate.  It doesn’t matter if it’s still working.  You must disconnect and re-access.

Master has missed a lot of work at his new job because of my kidney stone, and they have been so understanding of him shuttling me around to doctor’s appointments.  So, unfortunately I was on my own for this appointment.  He wanted to be there because he was planning on trying to stick my port himself, but he couldn’t do it, so it was me and L on our own.  I was really, really unhappy with what went down.

She tried to stick me, and the first needle felt awful.  I felt a pop as it was going in.  L didn’t even get the needle all the way in before we both knew something was seriously wrong, she had to pull the needle out, and that was that.

She tried again with a new needle.  It wouldn’t flush at all.  She really didn’t seem to want to try to get it to flush either (that’s where “lazy” starts to come in), normally you need to have the patient change position and try flushing it different ways, etc.  She wanted none of that.  I’ve done this many times.  When you are doing home infusions, you have a lot more limited resources.  I was getting nervous.

“How much weight did you lose this week,” she asked me.

“7 pounds,” I told her.

She thinks that my weight loss is why my port is suddenly not working.  While my total sudden loss (I’ve lost nearly forty pounds since December) is probably making is harder to hit because it is moving around more, I’m not 100% sure if my weight loss in the last week has caused the port to become inaccessible.  I’ve been doing this a lot longer than she has.  You might not think that to be true, but she herself admitted they mostly do PICC lines and almost never get a port.

PICC lines are fine and all, but they are accessed 100% of the time.  You don’t need to use needles on them each week.  My port is under the skin, and you run into trouble from time to time.  I could tell I knew more than she did about this.

She stuck me three more times that day, and she didn’t manage to get me once successfully.  It was awful.  She kept telling me that maybe I should go to the ER or to the Infusion center.  The ER will not let me leave there accessed though, I reminded her, and the Infusion Center needs an appointment set up at least a few days ahead of time.  If we couldn’t get a decent stick, I wasn’t going to be able to drink today.  This is the only way I was managing to get any fluids in.

With the last needle available in the house, she finally managed a poor stick.  It was not flushing well (you had to press the plunger on the flush really, really hard) but she was trying to tell me that was “just fine.” You could only just barely get the faintest blood return.  I knew something was wrong.  I’ve been accessed many, many times.  After two hours, I could tell she wasn’t interested in “fixing” my port and she left.  She told me she would see me in seven days.  That was that.

Master came home two and a half hours later, and even though my valves were wide open on my line, the first saline bag wasn’t done.  Master decided to call L.  I was glad for it, but I didn’t want to talk to her because I knew she wasn’t going to fix my line, which (in my opinion) was pretty lazy and messed up.  It was her job.

So, Master called her.  She picked up and he talked to her.  She sounded surprised talking to him.  “2.5 hours for ONE BAG?!  THAT’S WEIRD!”  She had already told me that even if they shipped out new supplies she wouldn’t come back out the next day, but on the phone she told Master she’d come out on a Saturday to fix my line.  On Friday, it took six and a half hours before I was able to be unhooked.  It usually takes two hours or so.

She came back.  This time was even more disastrous than the first, because they forgot to send extra needles so we only had two.  Master didn’t like watching her access me.  She wasn’t listening to him at all.  The problem is, my port is wobbly, and yes, it might have to do with my weight loss but that doesn’t matter.  What matters is she always sits to my right and she won’t change that.  If she’s going to hit my port properly she probably needs to stand up or sit to my left.  Regardless, we could both tell she was having trouble with the first stick.  There are three bumps you have to feel for.  She even said out loud that she could only find two.

“Well, take your time, and make sure you find all three before you poke me, because we only have two more needles,” I told her.

It was obvious to both me and Master that she didn’t.  She nodded, but then she just stuck me, and again, the port wouldn’t flush.

Before she stuck me with our last and final needle, Master Pravus offered to glove up and help her locate that last bump.  He remarked he could see the port and from where he was standing it looked like it was tilted towards the left.  She didn’t even reply to him, and just stabbed me with the needle.  I yelped audibly (I never do) and that was that.  My chest was bleeding enough that we had to put gauze on it and apply loads of pressure to get it to stop.  She obviously had missed the port again.

I started to cry because I wasn’t sure what I was supposed to do.  Due to the gastroparesis, I cannot drink without my port right now.  I don’t feel like my nurse is really taking any of this seriously enough.  She didn’t take her time, she was rushing, and she was stabbing at me without locating the bumps on my port.  That’s not okay.  Master got on the phone with the pharmacy and got them to send a driver out on a Saturday with a bunch more needles and sterile gloves.  Then he called L and told her that he wanted her to come back when the supplies got there.  She had no choice but to agree because she is the on call nurse as well this week.

I sat still for about a half an hour, and then Master came over and we started washing off my chest carefully.  He gloved up and we slowly started palpating for my port.  There were tears because we thought it might have flipped and we thought that I might need day surgery, but I calmed down when Master found one bump, then another bump!  It hadn’t flipped!  It was just (as he initially suspected) facing left.  The port was facing the kitchen from where I was now sitting.  The reason why the nurse wasn’t getting it to work at all was because she never found that third bump.  She was just going back through the initial hole that I had, but that’s not the proper way to do it.  My port has moved.  After we located the port, the nurse was already on her way back over because the supplies had arrived.  Master looked at me square in the eyes:

“I can do this.”

“You.  You think you can?”

“I think I can.  We’ll ask L to watch me when she gets here.”

L showed up, and Master’s technique was ten times better than hers.  I’m not just saying that.  He looked like one of the Infusion nurses.

It was really easy for me once Master did it.  Smooth and it went right in.  So much less stressful.  I felt closer to him than I have ever felt.  There is something very special about someone who can access your central line properly.  That is a feeling I am not even sure how to describe.

“I’m glad you asked if you could do it,” L said “because I was going to see if you wanted to. I’m having no luck.”  (Yeah, because you never found all three bumps!  You CAN’T JUST GUESS with these things!)

So, Master was right all along.  My port had been facing left.  He got it on the first try.  It was amazing.  The tension in the entire room lightened up and we all relaxed.

Master was beaming from head to toe.  He was so thrilled.  There’s probably something pretty amazing that goes along with accessing someone’s central line for the first time, especially when that someone is your wife and slave.

I’m really upset with my nurse though.  She seemed to think it was OK to let me go until I got to surgery being unable to drink and with a broken port.  She told us “Oh, they’ll fix it there.”

I’ve had plenty of surgery.  Let me tell you something.  No.  No they won’t fix it there.  If my port wasn’t working for surgery they would have just gotten a peripheral somewhere.  Then I would have gone home and still been UNABLE TO DRINK.  Responsibility.  Time to learn some, please.

The moral of the story for me?  I’m not letting her anywhere near my port.  I don’t trust her now.  Even Master said he’s planning on just accessing it himself.  It’s either Master or the Infusion center now.  I guess I won’t have any choice at the ER but here’s hoping I won’t have to go back there any time soon.