One Last Fight

Saturday May 20, around 11:30 p.m., Laila awoke in pain.  This was not something new but it was sooner than the every four hours that she had been waking for morphine.  This immediately concerned me.  I tried to comfort her but I just couldn’t.  I woke Jack up and we decided to call Dr. Moody, our palliative doctor for advice.  She gave us the go ahead to give her another dose of morphine right then but it didn’t even touch her pain.

I crawled in her bed with her and tried to comfort her but the pain was so bad that she became very hateful and hurtful.  She told me to get out of her room.  When I explained that I needed to be there to take care of her, she told me that she didn’t want me taking care of her anymore.  I know that was not her.  Laila was definitely sassy but she was not hateful.  Again, the alarms went off in my head that we were in trouble.

Dr Moody told me to call her back within 20 min if the pain didn’t subside, so I did.  This began a cycle of several hours of back and forth phone calls and increasing and increasing her morphine until we were at 400 times the dose we had been giving in the days before.  Yes I typed that right, 400% increase.  And that only got her relief for about 45-60 minutes.  Her heart rate was sky rocketing, which is one way we can tell she is in pain.  She. was. so. tough.  How she survived even that amount of medicine, let alone the pain is truly beyond me.

Around 4am we called our hospice nurse to come out and access her and she arrived around 5am.  We had decided with doctor moody that Laila needed to be put on a fentanyl PCA.  Fentanyl has always worked better for her for pain during our hospital stays and a PCA would give her a constant dose while also giving us a button to push if she needed an extra bolus of medicine for a few minutes.  The hospice nurse couldn’t get the pharmacist on call to answer his phone but said she would keep trying…. and went on her way.  Jack and I looked at each other wondering how in the world we had gotten to this point.  How were we, two unskilled, medically uneducated people, left to care for our fragile girl on our own.

We kept up with administering the morphine on the hour for the next few hours and called Tammy when morning came.  She was such a God-send.  While hospice was supposed to be who was helping us during these difficult days, it was Tammy who was by our side.  It was Tammy who was there and explaining things to look for in her final hours, while she herself was dealing with her own grief of watching this precious girl that the three of us, Jack, Tammy and I, had worked so hard to fight for and keep “healthy” these last few years.  Yes she is our nurse, but this part was hospice’s job and they didn’t do it.  Tammy came as a friend and a family member to support us when we needed her most and for that we will be forever grateful.  Thank you Laila, for leading us to such a beautiful, wonderful person to share our life with.

When the hospice nurse left around 5:15am she said the pharmacy opened at 8am.  They use a pharmacy on the north side of Chicago, so when 10:30am rolled around and I still hadn’t heard from anyone that they were leaving to come to us, I started texting our hospice nurse again.  We only had enough morphine to last until 4pm so I knew the ball had to get rolling.  Long story short, over an hour of arguing and them telling me they were going to have to move Laila to the hospital for a few hours, and me momma bearing their….. butts and a pump was finally set to arrive to us at 3:15pm.  Turns out our hospice nurse wasn’t on call that day so she didn’t really want to work on it.  I finally had to say “I’m not a medical professional, today I need to be a mother so I need you to be the nurse.”  She proceeded to tell me that she wasn’t on call that day….. would’ve been nice to know earlier so I could’ve had someone who actually wanted to help us.  Once I found that out I called the 800 number and got the actual nurse on call who came out later that evening and was wonderful.

During this unbelievable day we had some visitors come in and out to sit with us or just pop their head in the door and hug us and again I see how God knew and was working things out.  Some family, some friends, some special people from her school.  I am amazed and thankful for how brave some of Laila’s special friends were to come and see her like that.  We were surrounded by those who loved and supported us for part of the day but we also had time that day were it was just us.  The six of us sat in the quiet and listened to the slow in and out sound of the oxygen machine and loved on each other.  Man… the six of us…  I wish I could still say that :(

We had many conversations with the three older kids about Laila and her health and the reality that we would lose her one day in the weeks leading up to this.  We thought it would be further off but we had already begun some family discussions and even a counseling session so that everyone would feel safe with their own feelings and opinions about what would happen one day.  They had decided at first that when the time came, they did not want Laila to remain at home when she was going to pass away.  Through discussions and counseling they had eventually changed their minds.  I desperately wanted to be at home.  I had spent too many days away from everyone sitting next to a hospital bed and Laila had come to the point where she didn’t really want to leave the house.  She wasn’t even asking to go to school which was completely unlike her.   She only ever asked to go to church.

The three big kids were absolutely amazing during all of this.  They weren’t scared, they weren’t mad, they were just concerned and sad.  They didn’t want to see her like this but they, like us, knew this was probably going to be the end days and struggled watching her suffer.  The boys read her stories and talked to her.  Emma painted her nails and helped change the cool cloth on her feverish head.  It was absolutely beautiful and absolutely heart breaking at the same time.  For 14, 12 & 11 years old, they should never have had to go through this but I have to say…. they were destined and designed for such a time as this.  I’m still amazed at how they handled and are still handling all of it.

The pain pump came just at the exact time we needed before we ran out of morphine that afternoon.  God gave me that one last fight for her and came through just in time.  As frustrating as all that was, I just kissed my baby girl and told her that her mommy would keep fighting for her right up until the very end.  And it gave God one more chance to show me that He continued to have us right in the palm of His hand.

As I  prayed during the weeks leading up to all of this, the only thing I would hear God tell me when I would be quiet and still was “I am with you always.”  I would question him and He would say “I am with you always.”  I would praise Him for the work I could see Him doing and He would say “I am with you always.”  I am crying to Him in my deep, deep sorrow and He says “I am with you always.”

That Sunday evening two weeks ago, I settled into bed with Laila for one last night.  Stroking her hair and gazing from the oximeter measuring her climbing heart rate and lowering oxygen level then over at my amazing husband sleeping in the recliner we had brought into her room.  I can still see it.  I can still feel it.  I never, ever want to forget how scared and loved and inexplicably peaceful I felt.  For one last night with my sweet, sweet girl.

Matthew 28:20 “teaching them to obey everything I have commanded you.  And surely I am with you always, to the very end of the age.”