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Post-Amputation (August 18th and onward)

Foreword (long form: not the TL;DR you're looking for): Right now, I am swimming in a deep sea of raw experience and emotions. I really cannot explain, capture, or translate these feelings as they swirl and flow around me. It's been three days once we ellipse 10:28AM (at the time of writing this paragraph, and it's currently 10:05AM). There are two reasons for this: (1) it's just the nature of dismemberment and how surreal it is to join this club and how all of my life experiences now and moving forward will change; (2) the untold amount of pain and the nature of phantom limb pain/sensations, especially as they contribute to tonic contractions and eventually contractures.

It has literally taken me three days, to tell most of you that I made it through the surgery and that my body was physically still alive on Earth, while weathering most of this agony in silence, along with my Mom along with myself advocating for better pain management. Moreover, there were moments that due to complications unavoidably and avoidably put me back into agonizing pain.

Let's start this retelling by first updating you with where I am now in this experience. The good news is if we keep up on all of the IV and oral pain meds, I'm actually at a 3, and sometimes a 2 on the pain scale. This is a vast improvement from my average of 7-9, then 5-6 as slow progress is made on catching up with it, to the eventual 4 which is the edge of tolerable (or the bare edge of tolerable). This pain started with awakening from my amputation and the lack of an epidural. Although the tube had been placed in my back in the OR (along with a temporary spinal block), only to awaken in 12/10 pain. It was untreated by oral and IV pain meds, even together. I eventually had to ask where my epidural was and eventually they had to be honest "it's ben ordered, we are just waiting on the pharmacy to fill it." In other words, it wasn't filled prior to the end of my surgery. I had to senselessly wait for a whole hour for that to be straightened out. My response was "Jesus Christ... I don't know if I can handle this anymore~!" My pleas for them to expedite this process fell on cold shoulders. Finally, after administering it, it did nothing! But fortunately a nurse came by and said it can take up to 30 minutes for it to fully kick in. In the meantime, while waiting, I took it upon myself to administer a second bolus at the 15 minute mark.

Aside from this, my pain oscillated from trending to managed, to unmanaged (the epidural falling out: new order wait and transition to PCA pump), to managed (slowly catching up), to unmanaged (IV for vancomyecin switched to 'good one' and pain PCA switched to 'the bad one' - ultimately leaked from the cannula), to managed (a new temporary IV in same right hand and finally all IV gone with the introduction of a new two-lumen PICC catheter line). So taken altogether, here's all the stuff hooked up to me at current and I feel rather good/in bright spirits:

  • Foley catheter
  • Wound vacuum on guillotine amputation site
  • Nasal cannula for supplemental oxygen for maintaining oxygen levels while on the pain meds
  • PCA for said pain management, alongside oral ketamine for the phantom limb pain, in addition to an oral regimen of pills (my regular pain regimen)

The staff are nice and seem non-judgmental and truly want to help their patients. This is truly a far-and-off departure from Presbyterian St. Lukes Medical Center experiences of yesteryear and all of my doctors and most of the staff in there (except minus my oncologist, who has practicing rights there).

To briefly hit on the issues I was experiencing with my IV sites: prior to the PICC placement, in my right hand was haphazardly held together by a single thread between the tubing and needle. Loose enough so that on several occasions if the top of my hand is to graze my bed table, the IV starts to lose fluid and I immediately retighten it to its one and only thread. Fortunately, I have a two-lumen PICC line that was just put in, so a load has been lifted there. No more IVs. Again, the two other/prior IVs were placed in areas of my arm that bend. For instance, the first one was placed in the medial cubital area - inner left elbow (the standby for most phlebotomists, both seasoned and new) of my left arm . The problem is this area is prone to bending and infiltrates and blowouts. This was my pre-op IV site for the original amputation of 8/18. The second IV site, was placed on my right hand. In all reality, quite probably right after they dosed me with an induction bolus of ketamine (they told me of this as they were doing it) for my general anesthesia. But, how did I know they were placing it right after I was asleep? Because with the anesthesia mask tightly sealed over my face, I was mumbling to the anesthesiologist and my OR nurse that my left IV was really burning as they pushed their various boluses of anesthetic into my line. At that point, I realized that I was probably less than 10-15 seconds from losing consciousness entirely, to let them know that blood pressure cuff on my right side was starting to inflate to the point/duration that it was getting out of hand. They told me that it can get that way and to not worry. When I woke up, they used the original right hand IV site (that was quickly taped-up, but later leaked and was no good for my PCA) to quite a bit to deliver a lot of medication (the irony!). Anyways, enough about that.

It turns out I'm writing this over the course of yesterday and today (August 22nd). I haven't fully addressed the elephant in the room (of missing my leg), primarily because I fortunately have everything handled by the nurses and various stuff hooked up to me. So I still at some point will be forced to look into the mirror metaphorically speaking and realize that when I don't have these nurses tending to me, it will be my Mom (time free from her job and availability permitting). But, moreover, the point is that I'm going to need to learn to rely on myself. This is one part creativity/ingenuity and the other is simply augmenting my tools (wheel chair and eventually prosthetics). Having said that, nurses have asked me on multiple occasions about in-patient physical rehab. To be honest, I'm not at all entirely against the idea, so long as what I'm learning is invaluable, applicable, and strategies are personalized to me (rather than the typical older-aged, diabetic demographic). Furthermore, given the traumatic experiences with my former providers... I really don't feel safe entering such a program on blind faith alone. What I am interested in and must discuss with case management during my discharge from my current hospital stay are the offerings I am hearing about that UCHealth offers on this very same floor. Basically there are 10 rooms dedicated to UCHealth's in-patient physical rehab program. So long as insurance covers it, I would be interested in it. However, again it depends on how diverse and complex the strategies they teach to keep patient's independent.

Lastly, in this post, I wanted to share that I'll be going through my second surgery here (at time of writing, having completed this post today: 8/22/2022: wheeled down to pre-op at 11:30AM and will be undergoing surgery again here from 12:30-3:30PM for the removal of the previous antibiotic nail, deep bone biopsy, and formalization (closure of the wound by Stoneback) and before being closed up Greyson will be performing the TMR. As a reminder, Targeted Muscle Reinnnervation is the process by which existing nerves (usually redundant nerve tracts are repurposed to plug into terminal nerves, due to amputations. By providing these terminal nerves have a neighbor to talk to again. In theory, this reduces phantom limb pain and sensation.

Wish me luck! Depending on the level of post-surgical pain, it may be a while until my next blog posting. But I'll try to update this blog post to inform you I have completed the surgery, or to update you - while things are still vivid, on how everything went.

With peace and love, ~Z/aeth