I wish I had been keeping all of the visitor’s badges with the various spellings (butcherings?) of my name from the past six months. Today’s doozy was “Susazane” (SOOS-uh-zayne?). Really? I even usually spell my name for them when I get there. Several of the security guards know me by sight (and name) by now, and today one of them mistakenly thought I was an employee because he’s seen me there so many times. They are supposed to call up each time to verify that the patient is able to take visitors and that I am on the approved visitor list, but now they just give me a visitor’s badge and let me go right through.
The CRRT (Continuous Renal Replacement Therapy, a.k.a. continuous dialysis) machine that Kendall is on apparently isn’t a standard thing used by many patients. So Kendall often has various nurses coming in for a chance to “train” on it, and we had several who were very excited to get to help change the filter (done every 72 hours), or who were disappointed that they had missed it. The CRRT is the teal machine in this picture (Kendall’s ventilator and another IV pole are on the other side of his bed).
As if that wasn’t unusual enough, I learned today that Kendall is the ONLY (!!!!) HICU patient right now. At all! There are a few other patients on the floor, but they are overflow from other parts of the hospital (mostly surgery) and only need a little occasional “watching” or vitals taken every four hours. No wonder Kendall (and I) have gotten so much attention during this stay! And no wonder they wait for me each day to do their rounds on him. Wow.
Kendall’s encephalopathy is still quite severe, and he’s often agitated, seems to be in pain, or appears frightened. Today a chaplain from the hospital came in and talked to me. That was the first time I had met him, and I asked if there were any members of the Church of Jesus Christ of Latter-day Saints currently working who would be able to give Kendall a priesthood blessing. Kendall did noticeably calm down after getting a blessing, and was able to (thankfully) fall asleep for a bit. He continues to do better if I am there with him, and usually nights are his hardest. My dad had the great idea that I could record my voice saying calming things, for the nurses to play to him when I’m not there. We have a voice recorder ordered and it should arrive tomorrow.
There are so many things that Kendall’s body is fighting right now. The doctors are especially worried about how long his heart will be able to tolerate these extreme hypotension (low blood pressure) dips he keeps having, even while on high doses of norepinephrine they are giving him to combat it. The next few days will be very critical. If Kendall’s body isn’t able to stabilize and regulate his blood pressure and heart rate on its own, there won’t be much the doctors can do for him. His heart will eventually give out.
The past week spending every day in the ICU has been exhausting, both physically and emotionally. Kendall’s mom will be flying back out to Utah this coming Saturday, so it will be good to have an adult here at the house while I’m gone so much. In the meantime, I have been finding a lot of comfort from the words of the hymn “How Firm a Foundation.” Tonight as I played and read through the different verses, I was struck by the following things:
Verse 1: I have a firm foundation when I exercise faith in the Lord’s word. I really have been given the guidance I need to get me through this (“What more can he say than you he hath said”), and I should be turning to the Savior for refuge.
Verse 2: The Lord’s promise that “As thy days may demand, so thy succor shall be.” These are some incredibly demanding days, but I can trust that God will give me the strength I need to get through them, and in the very personal ways I may need.
Verse 3: I don’t need to be afraid, God is with me and has promised to give me the aid I need. “I’ll strengthen thee, help thee, and cause thee to stand.” His righteousness and His hand will uphold me.
Verse 4: This whole verse gets me every time. There’s no question our family is being called “through the deep waters” right now, and I’m amazed we haven’t been “overflowed” by everything. Then that reminder that “For I will be with thee, thy troubles to bless, And sanctify to thee thy deepest distress.” I’m so grateful to be able to see the blessings and the beauty and the goodness that has come out even amidst my “deepest distress.”
Verse 5: This one, too. Yes, our pathway has definitely been lying through fiery trials. But God’s grace gets us through. And it reminds me of the smelting process, “Thy dross to consume and thy gold to refine.”
Verse 6: If I’m being honest, I often skip this verse, because it makes me incredibly sad to think of not growing old with Kendall.
Verse 7: God will NEVER forsake “the soul that on Jesus hath leaned for repose.”
So those are my thoughts for tonight. Tomorrow I’ll be back at it, and also making some decisions I would rather not have to deal with. I would gladly welcome some extra prayers during these critical next few days.
This is Susazane, signing out.
