AHHHHH! After two weeks up many ups and downs, uncertainties, and rescheduling, today I hit my breaking point.

Last Thursday, after waiting anxiously all day for the confirmation that surgery was scheduled for Monday, we got the news that the surgeon down south wanted me to get an ink test done first to see if there was anything wrong with the structure of the port. The next day, a hospital in the city called to set up the test, to take place on Tuesday the 23^rd. The nurse booking us in said surgery would likely follow the test.

Fast forward to yesterday.  After fasting since midnight (and staying up until almost 3), I was up at 7:30 am, dragging to get myself out the door. My nerves finally set in at bedtime the night before, and followed me the next morning into the hospital. We got in right away, prepped; and before being wheeled down, was told by the head nurse that after the dye test they would most likely be setting up a temporary IV since we “weren’t getting it looked into for no reason, after all.”  When questioned about the temporary part, she admitted she meant a port, as they “don’t stay in there forever.” Temporary or not, it sure didn’t sound like she meant surgery, but rather another peripheral IV…you know, the ones that last a week, max?

Matt was allowed to follow me to the operating room’s doors, which I was parked just outside of in a dark nook that I jokingly referred to as the “storage closet” while we waited; and then I looked up. A box, labelled, ‘Christmas decorations’ was on a shelf above my bed. It didn’t just look like a storage closet! The surgeon came out and explained what was going to happen. My port would be accessed, I would have contrasting ink injected…and not to worry, they would give me pain meds and sedation. “…for the ink test?” I asked, unsure of why that would hurt. “No, for the port insertion” he answered. I told him I wanted to be put under, as I was last time. Sedation doesn’t usually work on me, I said from experience. Apparently he would have needed to know that beforehand in order to book an anesthesiologist, and told me that if it were him, he wouldn’t risk the potential side effects for a procedure like this. I would, and said so; but, wanting to get off of this emotional rollercoaster, I agreed to the grand finale, and said I would go ahead with it, so long as he sedated me as much as possible. He told Matt I would be 15 minutes for the ink test; and an hour if the surgery went through.

Gripper's safety latch removed & set aside; port accessed

We went in and I was prepped “just in case.” He asked if I needed pain meds for this part, too. I declined, thinking it would be the usual port access (and not wanting to look like any more of a baby than I already seemed to!) Then a gripper twice as large as what I am used to was clumsily inserted into my port. Unable to shove it all the way in (due to size, or inexperience? The jury is still out on that one) the gripper cap hung from the end of the needle at a 45 degree angle, dangling, only half-inserted; like a large spoon laying in a mixing bowl. It wouldn’t flush, and it wouldn’t draw blood, which he mentioned anxiously. And then, without holding the port down, the gripper was ripped out hurriedly, my IVAD trying to follow. Another (shorter) gripper was inserted. This time it entered my port, albeit painfully, in full. The doctor, unable to remove the safety latch, worried aloud about the inability to flush or draw from it again, after he struggled to remove the latch off the gripper. I briefly made a suggestion as to how to remove it, but he ignored my idea, stating that the plastic would just crack. Ripping it out, once again without care, he requested a 90⁰ straight needle to use.

Huber needle inserted in port

Well, it took the poor nurses roughly half an hour to scour the entire hospital looking for one. After plenty of foot-tapping, strained small talk, and wondering what was taking so long, the doctor finally had his “old-school” gripper in hand. Because it was one made without a safety lock (with nothing additional to remove), it was much more easily inserted. He was finally able to get it to flush and aspirate this time, and the ink was injected.

The ink showed nothing. The port filled nicely, and flowed along through the catheter tubing without incident. And, even though it still burned when he flushed and filled it, he deemed it structurally sound, and therefore just fine to use—“so long as I use the [new kind of needle] to access it, and forget about using grippers”. He said the grippers and the incorrect insertion of them were likely the problem (ha!) and so long as I switched needles I would be fine to continue using my port. That was easy! Right? I asked him if he would leave the port accessed (so I could use it instead of this pain in the arm!) and strangely, he declined, saying homecare could do it (but not before inserting-- and removing-- another one to do a forgotten heparin flush)!

So, I got wheeled back to the place where I left my belongings, met the new nurse on rounds, and asked her if she could access my port for me. She obliged, using the recently recommended access needle; and accidentally broke it, thinking it had a safety clip to detach, like the other grippers (which would remove the sharp from the centre, leaving a hollow, blunt tube inside). This new needle was just that: a needle, and would stay so, pointed end and all, once accessed.

Beveled needle on a Huber needle

WELL, upon realising this, she said she wouldn’t access it again because she, couldn ‘t just let me leave like that—with a spike in my chest! (“What if something happened, and it came out, and poked you again?!”) So I asked her what I was supposed to do. “Home care,” she answered. Each and every time I need an IV run (up to 3 times a day); with a new needle to poke me each time (what the heck is the point of having a port if you have to get poked every time?!!) I told her that that wasn’t possible—I see homecare once a week for a port access; they won’t come 3 times a day! So I ask if I can talk to the doctor again. The woman was a fortress; a steel wall. No WAY was I seeing that doctor. Because my port was deemed structurally sound, there was nothing they could (read: would) do about it. Now my logic may be skewed, but see if you can follow me: if I can’t use a gripper, because that was the problem (in the doctor’s words); and I can’t use the new access needle, because it won’t suit my medical needs, then the port isn’t in working order at all, since there is no way for me use it. Make sense? I thought so, anyway. She didn’t. Finally, exhausted after going around in circles, the head nurse came back. The doctor passed along that he didn’t say I couldn’t use the grippers, but rather that he couldn’t get them to work. Okay… (even though that was NOT what he said), could they put a gripper in for me then? Oh, NOOOO. No, homecare has to do that (now)!

SO, we drove 45 minutes out-of-town to see our local doctor and nurse. Both of whom still think I need a new port, regardless of what the (“inconclusive”) test shows. So, after getting my port accessed with a gripper (might as well try), and having it burn, slightly swell, and hurt, we are now back to waiting to hear from out doctor down south (who was working until 11 pm tonight!!), so we can schedule a surgery hours away from home (…or not, since, you know, nothing has been certain in this regard); only to recover in a strange bed for days before I am well enough to come home.  Do I want to have another surgery? Of course not! But I do want (actually, need) to be able to access my port, and continue my treatment pain and worry-free.

I sure hope we don’t have to cancel Jack’s swimming lessons for this. 

Blessings,

Kate

“Come to me, all you 

who are weary and burdened, 

and I will give you rest.”

Matthew 11:28

“I am always with You; You hold me by my right hand.

You guide me with Your counsel, and afterward,

You will take me into glory.”

Psalm 73:23-24