Precipice - And A Day of Miracles

Yesterday (Saturday, 10/18), it was as though we stood on the edge of a great precipice.  We looked over the edge trying to see what lay at the bottom, but it was completely obscured by fog.  Today (Sunday, 10/19), we had to make a choice, and just jump.  But today was also a day of fasting and prayer, and a day of miracles.  We are so grateful to each and every person who has been praying for Nicole.  Thank you.

I am tired, and this post seems very scattered to me, but it'll have to do.

Nicole had a comparatively quiet, restful night last night, and the CO2 level in her blood improved.  Unfortunately, nothing else did.  I'm not sure what this morning's EKG showed, but the chest x-ray showed a significant change for the worse - filling with fluid.

There are four different teams involved in Nicole's care:  Bone Marrow, Cardiac, Infectious Disease, and Intensive Care.  They're all working together, trying to understand what is happening to Nicole, trying to help her.  We also had the same nurse again today.  As I've mentioned before, there's a lot of things going on, but the heart failure is the pressing concern right now.  Throughout the morning, various members of the staff came in and spoke to us, giving updates and opinions.  It was made clear to us that later in the morning, all of the stake-holders would gather together and talk things over, and then come to us and discuss things, and ask us to make a decision.  As this went on, Cathy and I made our choice to go all-in and make a final attempt to preserve Nicole's life; which I'll get to shortly...

We had our immediate family with us again today, but at one point, I was completely alone in the room with Nicole for a few minutes.  She was awake and seemed responsive, so I leaned in close, and asked her a few questions.  These days, Nicole is most likely to respond "no" or shake her head to most questions, so I purposely phrased my questions such that she would need to respond in the affirmative in order for me to stay strong in my own resolve - Nicole is only three years old, and doesn't really understand what is happening to her, but Heaven has been close the past couple days, and I needed to know if she still had the fire in her, the will and the determination to fight; because if she didn't, then I knew in my heart that couldn't bear to put her through what was coming.  So I talked to her and carefully watched her eyes, strained to hear any audible response through her breath-mask, and to detect even a small shake or nod of her head.  Nicole still had the fire, and I told the Lord that Cathy and I were going to press forward, so if that wasn't right, then He had better let us know now.

I suppose that I am a little anti-social to begin with - I don't enjoy big social gatherings and events, though I do better one-on-one or in small groups.  And although I am truly, deeply grateful for the outpouring of support by family, friends, and even strangers, and am strengthened by others, when I am hurting deeply, I just want to be alone, want to be with my own thoughts, want to try to commune with my Heavenly Father.

However, I was very grateful when my younger brother and his wife came to visit us.  And also, earlier that morning, when a neighbor called and asked if I wanted him to come down and give me a blessing, I consented.  I knew that we were faced with impossible choices today, and needed all the help we could get.  I told him that if he was going to come, then he needed to come immediately; otherwise, there would be no need.  So, mid-morning, right before the consultation with the medical staff, I received a much-needed priesthood blessing, and then we administered a blessing to Nicole, and then finally to Cathy.  I had been strengthened again today, and reconfirmed the blessing my brother and I had given to her the day before.  Immediately following this, the room was cleared, and our immediate family came in for a few minutes to be with Nicole one final time, and then is was down to just Nicole, Cathy, and me.

There are three possible reasons that Nicole's lungs are filling with fluid:
  a.  Her lungs are bleeding, which would most likely be caused by Graft Versus Host Disease (GVHD).  This remains a possibility.  If this is true, then some measures could be taken that may, or may not, help put an end to the heart failure.
  b.  She has an as-yet undetected virus or infection.  This is still a possibility, but seems the least likely reason at this point.
  c.  The lung failure is incident to the heart failure; as the heart continues to struggle, other organs are affected, and may also begin to fail.  In this case, there is nothing more medically that can be done to keep Nicole alive, and the measures that are currently being taken are futile.

There are three options that Cathy and I had to choose from today:
  1.  Shy away from the two real choices, because they are so painful to contemplate, and just keep battling blindly, hoping to find a needle in a haystack before her heart gives out.
  2.  Send Nicole home, and make her as comfortable as possible until her heart stops.  End the struggle, end the madness, let her go home where she belongs, and enjoy her company briefly while she still has some life left in her.  If reason 'c' above is the truth, then this is the correct option.
  3.  Put Nicole on a ventilator (intubate her).  This would allow the doctors to be able to get samples of her lung tissue, and perhaps gain some insight into what is happening, and what might be done to help Nicole, if there is anything that can be done.  It would also likely help to relieve the distress on the heart, since a machine would be breathing for her.  It would also allow the doctors to take some other measures to try to help her heart, in at least a small degree.  However, it might also kill her during the procedure.  Nicole's body has endured so, so much, and her current weakened and fragile state make it a very risky choice, and even if she survives it, it may ultimately just be more trauma, more brutality, for nothing gained - there may be nothing really to do, nothing really to find, and she may die anyway.  And it isn't just the trauma of the procedure itself to consider, but also the semi-coma-induced state that follows.

We had the consultation with the medical team.  It was a very somber meeting, and was, in its own way, as sacred as when the priesthood blessings were given.  After some discussion, we indicated to them that we chose door number 3 - understanding that due to her terribly weakened state, there was a high probability that she would die during the procedure.  We talked about things that no parent should have to talk about, though so many do, especially in the childhood cancer world.  After the meeting, preparations began immediately, but it took a while to get things ready - to prepare for all possible, even probable, contingencies.

As the preparations were being made, Nicole started to struggle with breathing, even with the BiPAP.  Part of my mind registered concern (and Nicole's nurse told us several hours later that if they hadn't proceeded with the intubation, he felt that she wouldn't have lasted through the night).  However, I had a tremendous sense of peace; I felt certain that Nicole was going to get to, and go through the procedure, and that despite the cards being stacked against her, she would survive it.  At the same time, I also knew that if she died it my arms at that very moment, then I would mourn, I would be devastated, but I knew that it would be the will of the Lord, and I would accept it.

At about 1:00 P.M., it began.  They sedated her somewhat, but she was still awake.  As they were stretching her out and making the final preparations, she became a little anxious, afraid.  Cathy and I were allowed to each hold one of her hands and talk to her, comfort her, until the very last moment - then we had to step away...

Perhaps at some future time, I will record my thoughts, my feelings...but not today; just too much to express, and I am too tired to try to put it into words.

Today we witnessed a miracle - executed by mortal hands, guided by Heaven's power; the procedure was successful, and by 1:30 P.M., the immediate danger was over, and the staff went about the routine of getting Nicole situated and comfortable as possible.  She receives both sedation and paralytic.  The sedation is enough to help her be comfortable, and she will sleep more, but she is still often conscious, often aware of her surroundings.  However, due to the paralytic, she can hardly move a muscle, not even open her eyelids.  I have tried to imagine what that must be like - it can't even be explained to her what is happening -  she is conscious, aware, but unable to do much of anything.  She can shake her head, and wiggle a little.  She cannot communicate; in fact, with the tube, she cannot even cry audibly, and the paralytic suppresses most of the shudders she might otherwise make.  I have tried to imagine, but I cannot.  All I can do is weep when I think too much about it.  We talk to her from time to time.  I sing to her.  Cathy started reading "The Secret Garden" to her.  Time passes very slowly for us, and I am certain it is even worse for Nicole.  I played some of her favorite songs on my phone for her, and she wiggled her thighs like she was trying to dance.

They're doing all kinds of things, including putting her on a high-tech cooling pad to help reduce her body temperature due to the fevering.  Overall, as the day has passed by, it seems like her heart is definitely doing better.  Unfortunately, today's miracle, by itself, is insufficient; the next 48 to 72 hours will determine whether or not Nicole will eventually be able to return home to live.  Despite everything, Nicole's spirit and determination still seems strong, but the next couple days will be very hard.  For now, all we can do is continue to pray and wait patiently on the Lord to stretch forth His arm of deliverance.

The Veil has been very thin in Nicole's room for the past two days; and she has been seeing angels that the rest of us can perhaps only feel from time to time.  We have watched as Nicole has stretched-out with her hands to try to touch outstretched hands unseen by everyone but her.

The medical staff here at PCMC - how grateful we are to them.  How grateful we are to all who are praying and working for Nicole.  How grateful we are to our Father in Heaven for allowing us the privilege of being Nicole's parents.  And how grateful we are that He is with her.  I know that miracles have not ceased among the children of men.  "And now, I, Moroni, would speak somewhat concerning these things; I would show unto the world that faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith." (Ether 12:6).  I know that is by the faith of many people in calling down God's power into a little hospital room that Nicole is still alive today.  Miracles have not ceased, because faith in God has not ceased.