The good, the bad and the ugly
- 18 minutes ago
- 3 min read
Pain and fatigue have become overwhelming the last couple of days. I've had to decrease the interval in which I take my pain meds resulting in needing more pain meds a day. The fatigue was unbearable. If I was quiet for 15 to 30 seconds, I automatically fall asleep on the spot. I spent most of my days curled up in bed snoozing away.
Then, on Tuesday I was awakened from my napping slumber by a new pain in my shoulder, neck and jaw. At that point, hubby decided it was time to take me to the ER.
Except we go to the ER at a major teaching hospital where all my specialists are and that often means long waits. We arrived at the ER at 4:30 p.m. I was triaged with an EKG, blood work and a chest x-ray and then sent back to the waiting room but marked as a "priority case" because of my extensive cardiac history. More than 6 hours later I finally got called back to a room in the ER. Once I was back in my own room in the ER we thought things would move quickly, but after 45 minutes we hadn't even seen a nurse or a doctor. And did I mention that the blood pressure cuff/heart monitor just kept beeping and beeping and beeping. So even though we had all sorts of down time, it was nearly impossible to sleep. We eventually saw a nurse and a doctor - which led to them ordering a CT scan. Two emergent cases came in and got to have a CT before me. The CT scan itself only took 10 to 15 minutes -but then we waited another hour for the CT Scan results to be read. The CT report showed comparable findings to the pet scan I had at the end of April. With these findings they were willing to admit me to do some further investigation. They found a bed and admitted me to the hospital, nearly 12 hours after we had arrived. But the fun doesn't end there...
As I was settling into my new room and being admitted, my blood pressure bottomed out. After retaking it, calling other nurses, then talking to the PA it was decided that they would call a "rapid response". Within seconds my room was flooded full of doctors, nurses and critical care specialists. I had IVs placed in both arms as they formulated a quick plan to get my blood pressure back up. Well my blood pressure did stabilize. My MAP (mean arterial pressure) score still remained just under their guidelines. At this point the decision was made to move me to the ICU for monitoring.
The morning was a whirlwind - The ICU team, cardiothoracic surgery team, and infectious disease team all came through to assess the situation. And somewhere during this conglomeration of the minds, the attending went back and modified my CT report. The initial report had been read to say that everything was stable when compared to a previous scan done a few weeks ago. When in fact, this scan showed things to be much worse than anticipated. My pseudoanyeurism is no longer holding in place, there is another fluid-filled collection of new
infection, and I am likely bleeding into my chest cavity. I've started on additional IV antibiotics, been given two units of blood, received an arterial line for constant real time blood pressure monitoring, seen the cardiovascular surgery team and the vascular surgery team.
We are now presented with three possible scenarios moving forward.
1. Do nothing and go home. At some point the aorta will rupture.
2. A very radical and complex surgery where they would try to avoid the scar tissue in my chest by opening my back first, then my neck. The scar tissue makes it impossible to go through the chest because it would rupture the aorta as soon as they start.
3. See what the vascular surgeon can brainstorm. He said he has a couple options but none are great. "Just a bandaid on top of a bandaid" in his words. He will be talking again with the CV surgery team though.
We now have an excruciatingly difficult decision ahead....which no words can really describe.
As always we appreciate prayer and if tangible help is how you would like to help here is my wish list:
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