Still Sick

 If my naivete weren't so discouraging, my last post could seem humorous.  How dare I think that "two steps forward, one step back" was in our past?  How could I be so foolish to believe that Isaac would not be "stepping back"?  I so desperately want things to be "normal" that I ignore how long his recovery is really going to take.  I forget that "normal" will never mean the way things used to be.

 We returned to Primary Children's for followups on Monday.  Isaac had a delivery for one of his favorite nurses, Rosa.  I didn't expect the rush of emotions that came over me as I walked with Isaac into the Children's Surgical Unit to the "J" Pod.  He had never walked through those doors, only been wheeled through them dozens of times.  We weren't lucky enough to catch Rosa there, so we left her letter and headed down to get some lunch.  As we were walking away, Isaac said, "Mom, I liked when I was in J."

 Isaac had a good day.  Although his chest xray still reveals the ugly pneumonia his body is still fighting, his labs had all normalized (yay!) and the doctors said that we could do all remaining followup through our regular pediatrician (quadruple yay!) 

 So we celebrated with an ice cream sandwich.

 It is still hard for Isaac to walk very far, so he hitched a ride with Titus in the parking garage.  On the way home I called my family and told them the good news.  Isaac was better!  No more Primary Children's for us!

It turns out I contracted a hospital-borne illness during our stay: insomnia.  I haven't slept since Isaac was admitted.  Sleep and I used to be the best of friends, but not anymore.  Any parent knows that when a child is sick you maintain some level of consciousness listening for any indication of distress.  It makes me wonder, do parents of chronically ill children ever sleep?  I thought that Sleep and I would kiss and make up when Isaac was finally discharged, but my insomnia has gotten worse since we have been home.

With Jeff working out of state part of the week, and working the midnight shift the other part of the week, we don't get a lot of time to talk.  When we do, we try to focus on the positive things. Neither of us has ever voiced to each other our fears or concerns regarding our current situation.  Yesterday he worked a full day and then drove eight hours home so that he could see the kids before they left for school this morning.  Sometime in the early hours before dawn he was talking in his sleep (which he does frequently) and he kept repeating, "It will all work out.  Everything is going to be ok.  You just have to give yourself some time.  It will all work out."

 Monday night Isaac started complaining that his neck hurt.  Yesterday he woke up with a fever.  He had no appetite and laid on the couch most of the day until I took him with me to Titus' doctor appointment for the chronic rash on his face.  I asked the doctor about Isaac not feeling well, but he didn't have an appointment, so he wasn't examined.  Last night, Isaac didn't sleep at all.  This morning his fever continued and he wouldn't eat so I called Primary Children's and left a message.  He spent the day too weak and sick to even do sedentary activities that he has enjoyed lately like coloring and doing puzzles.  Right after the older kids got home from school, Primary Children's finally called me back and said Isaac needed to see a doctor.  I rushed out the door and told Daisy and Levi that I would try to arrange rides for them to get to dance and wrestling.  "Do your homework!  Get along!  Call if you need me!"

The doctor visit was more of the same.  More xrays.  More pneumonia.  More blood drawn.  More money.

Isaac's whole body was shaking and he was throwing up before I tucked him into bed tonight.  For now, he is sleeping.

We continue to rely upon the prayers and support of so many.  My mother-in-law came last night to be with Isaac so I could take Daisy and Levi to basketball and wrestling.  She helped with homework and dinner and stories.  My niece came and picked up the kids today so they wouldn't have to be home alone while we were at the doctor.  My sister-in-law fed them dinner.  My friend took Daisy to dance and another friend took Levi to wrestling all while we were at Isaac's doctor appointment.  More friends offered to help in any way they could.  My grandma put our names on the Prayer Roll in the temple.

I thought about what Isaac said, "I liked when I was in J."  He doesn't remember the days in the ICU.  Not many parents have the chance to spend 14 days with just one of their children without the distractions of every day life.  When I was in the hospital with Isaac I didn't worry about preparing meals or calendaring schedules or grocery shopping or doing dishes or cleaning bathrooms or PTA meetings.  I just worried about him.  I got to really listen when we had conversations because I wasn't on my way to do something else.  I didn't have anywhere else to be.  In discussing the clarity that came during this time, Jeff and I are determined to do our part to help each of our children recognize how amazing and precious they are.  My mission is to remain undistracted even outside the hospital walls.

I will listen, and feel, and love...and maybe, someday, sleep.