Walking by Faith

I kept thinking I should update my blog but each day I've hoped that we'd get to a stable point where I could see the path more clearly.  I don't care for surprises and the unknown is difficult for me.  But the truth is, we do not know what comes next in this mortal experience.
Neal checked into the hospital Sunday morning February 6th for his second aortic valvuloplasty which was scheduled for the next morning at 7am.  They began some preparations for Monday's surgical procedure but decided not to make a final decision about going ahead until the team could confer the next morning.  We really figured it would just be routine; in fact at 7am Monday Neal even told me not to come to the hospital until about 10:30am because he'd just be sleeping in recovery and there was no point in waiting around. 
But I couldn't wait so I braved early morning traffic and arrived at the hospital about 8:45 expecting the surgery to be underway and maybe almost over.  I stopped at the information desk where the volunteer was either confused about what was onscreen or just didn't want to tell me what she saw because she told me his name wasn't on the operating schedule.  I went up to Neal's room on the 4th floor to inquire and as I turned the last corner I saw a giant group of medical professionals gathered around one room and realized that was Neal's room.  I tried to enter but the nurse stopped me and told me I couldn't go in.  All I could glimpse were lots of people gathered around my husband's bed and one of them was his cardiologist Dr L which made me realize that whatever was happening was very serious.  He heard me and came out to explain that apparently Neal had had some kind of allergic reaction to the presurgery medication and they were working on him.  The nurse took me away from the room, gave me a chair and gave me more details about what had happened.  Because he had been on coumadin until the previous Friday his PT/inr level was too high (2 point something) so they had administered vitamin K, which is used quite frequently to help with blood clotting.  She said Neal immediately complained of nausea and promptly turned beet red from head to toe, then passed out.  He had gone into anaphylatic shock and that resulted in the response of all those departments - Xray, EKG, cardiac nurses, pharmacy, pulmonary, cardiac anesthesiology, etc.  I had no idea what to say so I asked the nurse to identify each person, a badly-needed distraction.
They let me enter the room to see him but he didn't respond to me and was still very red except for an area around his heart and left shoulder.  They told me he looked better and was probably sleeping from the massive dose of benadryl.  Then Xray needed to come in so I had to leave to make room for them on that side of the bed.  When they left I went back in and stood by him while the cardiac anesthesiologist administered more medication to bring up Neal's blood pressure.  He commented that it wasn't making any difference in Neal's stats, so I inquired if he was using a placebo.  Trust me to make a joke in a tense situation.  One of the ICU nurses replied "Yeah, it's probably a double-blind study" and several chuckled.  It didn't seem real to me to see my husband so bright red and nonresponsive when we'd just chatted on the phone two hours earlier.
Once his blood pressure was up in the normal range they moved Neal down to the 2nd floor to Cardiovascular ICU.  They asked me to drive Neal's wheelchair since none of them wanted to be responsible for it.  So I followed them through back halls, got to the room, then returned to the 4th floor to gather the rest of his things.  I spent the rest of the day sitting in Neal's room watching the monitors and worrying.  Neal was pretty groggy plus the original blood flow problems caused memory loss and confusion.  He was very weak.  Dr L told me that for an ordinary person the allergic reaction would have resulted in some itching and redness but for Neal  and his weak heart it was nearly fatal.  One of the pharmacy specialists told me that the vitamin K came from a new supply, so as a precaution they had pulled it from the shelves and sent it back to the lab for analysis and that the FDA was involved in the investigation.
I notified family and friends and stayed with Neal most of the day.  Tuesday Neal was confused but that was understandable.  In the afternoon I left the hospital and went to LDS Employment where Neal had texted the bishop and asked that I be given a blessing.  I talked with the bishop and then he and Gary (the director) gave me a blessing.   That evening Neal's daughters went to visit and his sister said that she would call him on her dinner break at Boeing.  Because Neal couldn't sleep they gave him Ambien which is on his list of daily medications only he became confused and disoriented. 
Wednesday Neal was confused most of the day, telling me he had enjoyed his visit with Lisa when she had told me she never had been able to contact him.  Wednesday night at ten his oldest daughter called me to say that Neal had been sending unusual texts about the birth of Anne's baby but he wouldn't answer her phone calls.  I tried to call him but he didn't answer for me either so I sent a text and tried to help him understand that everything was fine, the baby had arrived, no others were expected and to go to sleep.  He sent several texts about what the new baby should be named but finally quit texting about midnight.
Thursday morning when I arrived at the hospital, Neal was clear-headed and able to understand conversations.  He said he'd been very confused, had thought his stomach pain was related somehow to Anne's labor pains, thought there must be another baby on the way and that this one should be named in honor of his dad.  But he was lucid when I saw him and seemed like my husband again.  There had been a note added to his chart that Ambien caused him to have hallucinations and he wasn't to take it anymore.
We visited until the surgical team took him for the procedure and I wandered down to the cardiac waiting room to log onto the laptop and wait for news.  Two hours later Dr L found me and told me that it had not gone well.  The first attempt to stretch the aortic valve went as planned but after the second time Neal's heart hadn't resumed beatng.  He said they had to use heroic measures to bring him back and that he had to be intubated.  I knew what that meant but didn't realize how awful that would be.  When they let me return to his room, Neal was partially sedated and his arms were in restraints so he couldn't pull out the tube.  He couldn't make a sound with the tube in place but was desperate to get it out.  He tried to get me to undo the restraints or pull it out for him - his eyes were frantic.  The ICU doctor finally ordered a drip instead of injections so that Neal would be more comfortable with heavier sedation.  The doctor made some awful joke about the drip being safer for Neal's brain - I was horrified and didn't find it very funny.
That was Thursday.  Thursday night a long-time friend gave me another blessing of comfort and I felt I could cope with all the trauma our family was experiencing, not just in Neal's hospital room but other situations as well.  Not my news to share but the point is that Neal's health wasn't the only challenge family members are facing.
Friday was a continuation of Neal sedated yet struggling to remove the tube. I was encouraged that he could squeeze my hand and open his eyes when he heard my voice.  It seemed like just a matter of waiting for his breathing to stabilize and his kidney function to improve.  Dr L would stop by but he didn't have his usual confident manner.  He told me that there was no margin for error for Neal and that he was so fragile that any little thing could be the end for him.  He said the next few days would determine how or if he recovered but that side effects would be the concern.
Saturday morning there was a breathing trial - bringing him up out of the sedation enough to see if he could breathe on his own.  He was able to last an hour which was great but that evening the trial didn't go as well. I was so frustrated with Neal's daytime nurse.  She was very sweet but so slow to check on Neal when the various monitors would alarm, plus he kept struggling against the arm restraints.  I finally had to leave and not watch anymore.  I'm glad that I could call the CICU during the night to find out how things were going - the night nurse was very kind to me but she also told me that Sunday's early morning breathing trial had only lasted five minutes.
I went to church with the discouraging news that each breathing trial had lasted less time and that his labs showed more kidney problems.  His feet were swollen and dark, evidence of poor circulation.  Dear friends hugged me and inquired about Neal - I needed their support.  As I listened to the hymns and partook of the Sacrament I felt my spiritual sponge soaking up precious drops of comfort and looked forward to the talks, that they might add to that spiritual reservoir, expecting scriptures and gospel insights.  The talks were probably okay for someone else, but weren't what I needed so I finally decided my place should be in Seattle at the bedside of my husband rather than trying to listen and apply what I heard.
At the hospital the respiratory therapist was conducting another breathing trial.  It went much better so later that day the tubes came out and the restraints were removed.  Neal slept most of the afternoon as the medication slowly made its way out of his system.  Neal's sisters arrived for a visit and were there when a partner of Dr L came to check on Neal.  Since he had been involved in the surgical procedure on Thursday he was able to give us more details about what had happened.  The nurse was able to wake Neal and get him to respond although his voice was raspy and his answers were brief.  When I went home I was hopeful that he was finally headed in the right direction.
At midnight my cell phone rang - Neal's grandson said he'd just had a phone call from Neal wondering why he was in the hospital.  I called Neal and talked to him, gave him a quick summary and told him to not call anyone else.  "Why?"  "Because it's midnight and people are sleeping."  "Oh."  Sleeping in the daytime and waking at night are very disorienting - poor guy.
Monday Neal was moved back to a regular room on the 4th floor, Chris came to visit and we talked quite a bit while Neal dozed.  Tuesday grandson Isaac came to visit and Neal was more lucid.  I think I was surprised that Dr L wasn't more encouraging but the fact is that the kidney labs hadn't stabilized and the swelling in his legs and torso were a balancing act between what his kidneys needed and what his heart could tolerate.
Each day out of ICU Neal and I spent at least an hour or more working to help him remember the things that were confusing to him.  We reviewed what had happened in the hospital (he had no memory of the previous week), the names of family members, where they were and other details.  It was a struggle.
Wednesday Chris returned for a few hours and was there when we tried a bed to chair transfer.  It didn't go well - too many people making suggestions and Neal not as strong as he used to be.  I was frustrated and recognized that he would need more time in a rehab facility before I could care for him at home.   I'd stayed too long on Tuesday (or else left too early) because I found myself in the middle of the after-work commute in pouring rain, so on Wednesday Chris and I left during the afternoon.  I stopped for some retail therapy at The Landing and found a darling Easter dress for Celestina as well as a few things to replenish my baby gift stash.
Thursday morning Neal had occupational therapy followed by physical therapy, which included another bed to chair trial.  We had a different PT and she was willing to let me direct each step but Neal had a hard time sitting up in bed.  Each time he needed to rest and breathe before continuing.  Finally he said, "I'm sorry but I'm not strong enough to do this today.  I want to but I just can't."  We laid him back on the pillows and he complained of being cold so the PT brought him some warm blankets.  I put them on him but he began to shake.  I've seen him do that before but this time was a little alarming because his lips turned blue and so did his face.  About that time one of the cardiologists walked into the room and couldn't get a response from Neal.  I cranked up the oxygen supply and his color improved but he was nonresponsive.  The doctor called for support and once again the room filled with responders.  The doctor asked me to confirm that Neal was "full code" and told someone to page Dr L, that she just wanted to talk to him.  Within minutes Dr L was in the room.  They tried various things to bring Neal back and finally Neal was able to speak clearly to Dr L. The pulmonary specialist told me they were moving him back to ICU so I drove Neal's chair and followed Neal and the nurses as we moved from hallways to elevator to more hallways.  I made another trip to the 4th floor for his belongings then had a confusing conversation with Neal when he thought he was at a dentist office to have someone work on his feet. Dentist? His feet?  Gradually he became more focused and we talked...funeral plans, financial details, how to be a widow.  It was not pleasant but he felt like death was close and he wanted to talk.  Xrays were okay, the ultrasound didn't reveal any new clots, but his kidney function was worse, his pancreas was worse, his blood pressure was too low and his heart was in atrial fibrilation from 11:30am until the time I left last night.  Doctors came and went and the most wonderful nurse spent the day with Neal.  She's from Montana and it was refreshing to talk with her.  Gwenan came after work and stayed for several hours so she was there when Dr L came at 6.  He told both of us that sometime very soon we'll need to have a more in-depth conversation about when to stop trying to revive Neal.  Neal and I trust this man and we have told him we'll follow his lead about that.  We agree that putting Neal back on a ventilator is prolonging the inevitable so that won't happen again.  I guess I need to make changes in the standing orders we signed and confirmed when he was admitted.
So the afternoon was spent listening to my husband talk about dying and the doctor talk about the likelihood of it and trying not to break down.  Neal was asleep - all those meds have that effect.  Gwen and I had a great visit - talked longer and more openly than we ever have.  She's such a lovely person and I love her.  When Neal woke I told him I thought we'd go home and he became upset.  He really thought I was leaving him alone to die.  I told him, Gwen told him and the nurse told him "You are not dying tonight!"  Once he understood that her offer of food wasn't his last meal, then it was okay for us to leave.
I've called the nurse's station twice since then to check on him.  The nurse reports that he's comfortable, that he's had some juice and is stable.  Why can't I sleep? 
I guess I'll take a shower and head back to the hospital.