Bedside Vigil - Week 1 of Hospice

In the wee hours of Monday, May 1, KK was transferred from the ER to a room on the ninth floor.  A room just a couple doors down from the one we stayed in 2 years earlier.  The charge nurse remembered us and did everything she could to make us feel as comfortable as possible.  At that point, I sent my parents home to get a couple hours of rest.

I advocated for my girl every step of the way.

• They offered to hook her up to monitors, but I declined as I didn't see a need for monitors since there were advanced directives in place.
• KK was in a lot of pain the first couple of days.  KK never complained about being in pain, but I knew the pain had to be intense just by how grumpy and snappy she was.  Her team kept trying to get it under control with morphine, but it wasn't working.  I talked to PACT (Pediatric Advanced Care Team) about changing the steroids schedule from every 12 hours to every 8 hours in order to control the swelling in her brain.  As soon as they did, we didn't have to use as much morphine and KK wasn't as lethargic.  Though still weak, she was back to being her sweet and sassy self.
• We had some amazing nurses...then again, we had a couple that I wanted to send packing.  I absolutely loved the night shift nurses that came and went throughout the night without waking KK or me.  Then there were the ones that insisted on turning KK  throughout the night (so she wouldn't get bedsores) or waking her up to ask her if she needed to be changed.  When her doctor made the rounds after experiencing the latter kind of nurse for the first time, I asked him, "Do the nurses have palliative care training?  Don't they realize that bedsores are the least of our concerns?"  He admitted that they all could use some training in end of life care.

The first week of hospice found us keeping vigil by KK's bedside.  I fully expected that any minute could be her last.  My parents as well as the staff at Chapel spent many hours with us, while a few friends took turns doing the night shift with me so my parents would feel comfortable enough to go home to get some rest. KK wasn't eating and only had sips of water here and there throughout the week.  There were multiple times when there would be a pause in KK's breathing when we thought "this is it".  We spent hours just singing to and with KK...of course, Jesus Loves Me was at the top of our setlist.  I will never forget the conversations that we had that week -- from the sweet, to the sassy, to the spiritual.

Here's a glimpse of the sweetness...

• KK was sure to say, "Thank you for helping me" to every PCA, nurse, and doctor...even when she was grumpy and in pain.
• She shared "special KK hugs" with the nurses so they could give them to other kids "even when they didn't deserve them".
• She reminded me to tell her birth mom that she loved her and forgave her and that she would always have a special place in her heart.
• My sweet girl said, "Thank you mommy for choosing me.  Thank you for sharing Jesus with me."

Oh, the sass...she had us all laughing at her one-liners.  Here are a couple of classics...

• After her medicine pump was beeping for quite a while and a nurse finally came in to shut it off, KK quipped, "That beeping is frustrating.  Don't you know I'm trying to die here?"
• When the staff were leaving one afternoon, Andy told KK to ask God if the Patriots were going to win any more Super Bowls.  Pastor Derek followed by asking her to find out if the Chiefs would ever win one.  As clear as day, KK said, "I never really thought of the Chiefs as real competitors."

As for the spiritual...

• KK was adamant when she told the doctors, "When I die, don't bring me back. I'm going to be in a better place."
• At one point, I told KK that she didn't have to fight anymore and that she could go to Jesus.  With a little frustration in her voice, she said, "God said 'No, ma'am. Not yet.'"  I laughed at the thought that God said "No, ma'am" as I had taught KK to respond with "No, ma'am/No, sir" and "Yes, ma'am/Yes, sir" when she first came to live with me.
• KK kept asking about heaven.  I would describe heaven from what I knew from the Bible, but she kept asking, "What do you see?"  It finally dawned on me to ask her, "What do you see?"  She said, "Mom, I see your spirit and your spirit is strong."  Oh what a beautiful glimpse into eternity.  Since we think so finitely in these mortal bodies, we forget that time is different in heaven.  On this side of heaven, I wait to see my baby girl again.  To her, I am already there. 

And the conversation that I will remember the most...

• I told KK, "I promise I will tell Mommy Paulette (her birth mom) that you love her and forgive her.  And I promise that I will adopt again."  As soon as I said that, KK reached for her necklace that says "Love like you've never been hurt".  To which I responded with tears streaming down my face, "And I will love like I've never been hurt."

The Day I Went Radio Silent

I just read the last posts I wrote before I went radio silent when KK was admitted to the hospital for the last time...

On April 27, 2017, I wrote:

...this week, I trust that God will continue to lead us no matter what the MRI reveals.

We didn't make it to the scheduled MRI on May 3.

On Sunday, April 30, KK and I went to church.  It was Chapel Family Sunday and I had to speak during both worship services.  KK did what she loved most during first service -- she loved on the babies in the nursery.  During second service, she sat with me in the sanctuary and laid her head on my shoulder, trying not to fall asleep.

It was a pretty low key afternoon as KK took a nap and enjoyed a long bath.  As I tucked her in bed around 7pm, I told her, "I'm going to come in and check on you in a little while because I'm worried about you."  When I went to check on her an hour later, she didn't budge.  I figured she was just in a deep sleep and would check on her in another hour or so.  At 9:30, I went in to check on her and get her up to go to the bathroom.  Again, she didn't respond to my voice or my nudging.  I turned on the light and she eventually opened her eyes.  However, she wasn't able to sit up.  I called Dana Farber.  While I waited for the doctor on call to return my call, I was able to get KK to sit up in bed.  The doctor said I needed to bring KK to Children's Hospital and that I could call for an ambulance to bring her there if need be.  I called my parents and told them I needed them to come immediately.  KK and I worked together to get her down the three stairs of her loft bed and to the living room where we were able to get her shoes and jacket on.  I put a few more things in our hospital bag then helped KK painstakingly down the stairs and to the car where we waited about 5 minutes before my parents arrived.  As we waited, I wrote:

We are heading to Children's for an emergency MRI. Prayers appreciated.

In the emergency room, KK needed to be changed and for the first time (at least while she was conscious) she was unable to assist in the process.  When KK was unable to "bridge", I realized that KK's final days would be spent in the hospital.  Previously, KK had stated that she wanted to die at home if at all possible, but she understood if it wasn't possible.  Unfortunately, I knew that I wouldn't be able to care for her by myself at home and hospice care only provided a nurse to assist in the morning and evening.  So once the MR vent check revealed what we already knew, I told the doctors that we would need to do hospice at the hospital.

3:38am Wake Up Call

Breakfast of Champions

Here's the reason I needed to get away to process and blog about KK's final weeks...

It is 5:24am and I am sitting here with my breakfast ready to write.

I know this is not an unreasonable time to get up for most, but it is crazy early for me (especially on vacation).  The kicker is that I have actually been up since 3:38am after going to bed well after midnight.  I laid in bed for almost an hour and a half unable to go back to sleep as I formed blogposts in my head while tears streamed onto my pillow before I finally decided it was time to get up and start writing.

A Daunting Task

I can hardly believe that it has been 10 months since I have posted anything here.  I have taken to Instagram here and there throughout the year, but I have not been able to muster up the energy to write the blog posts I "need" to write.  I know I need to process KK's final weeks in order to "keep moving forward".  I process best by writing, but the emotional wherewithal it would take to do so seemed too daunting. I have found simply writing a short caption under a photo on Instagram to be emotionally draining.

I have continued to go to counseling with Dr. Chuck, but our time together is mainly spent on how to deal with what is in front of me.  I shared with him that I needed to find time to blog when I didn't have to worry about having the energy for everything else in life.  He suggested that I check out a place called Forest Haven in New Hampshire.  Forest Haven is a small retreat for those in ministry to go to free of charge.  I contacted them to see if they had availability for the last week in October... and they did!  So I drove up to Bradford, NH this afternoon and am ready to face the daunting task before me.

Stay tuned...