Out of ICU!

Tonight I write from home.  Jeff came and brought the kids up to see Isaac tonight for the first time since they told him goodnight 10 days ago.  Jeff needed a break from the circus.  I needed a break from the hospital.  Tonight I got to talk to my kids about school, friends, Christmas, and their feelings about Isaac.  Tonight I got to drop off our secret 12 Days of Christmas gift with them.  Tonight I got to rock my baby to sleep.  Tonight I will sleep in my own bed.  Tomorrow after I help my kids get ready for school and drop them off, I will drive back to the hospital so Jeff can get to work.

Yesterday after a visit from the Utah Highway Patrol, Isaac decided he had had enough of being in the hospital.

He removed his pulse oximeter, his chest leads, his blood pressure cuff, his oxygen cannula, and even pulled out his feeding tube.  To me, this was a sign he was getting better.  As a result, he was strapped into these soft arm restraints, which he detested.

 It was finally time for us to leave the ICU.  We loaded all of our goods up on the foot of Isaac's bed.

 

 And off we went to the CSU: Children's Surgical Unit.

We got settled in for the night.  I unpacked a miniature Christmas tree from Aunt Kandi and Isaac finally fell asleep.

 As I listened to the comforting sound of him breathing normally, I read through all of the well wishes and generous offers of close friends and strangers that came as a result of Isaac's story appearing on KSL.

 

 Today, Isaac sat by himself for the first time.

 The physical therapist came first thing this morning (before I had my make up on) and simply stated that it was time for Isaac to sit up.  I was reluctant because I knew how weak he was.  The therapist helped him and showed him a few tricks.  Within minutes, Isaac was on the floor sitting by himself and lifting his arms to play with a ball with the therapist.

 Our next visitor was the Occupational Therapist, who will work with Isaac on everyday tasks like using the bathroom, getting dressed, and feeding himself.  Today, it required significant effort to place these shape blocks in the right hole.

 Next came Music Therapy.  This part was probably more therapeutic for me than it was for Isaac.  I couldn't stop the tears from rolling down my face as I listened to the beautiful voice of this amazing student sing sacred Christmas songs to my sick boy.

 After a morning filled with therapy, we had surprise visitors.  My roommate from college (over a decade ago) came with gifts, hugs, and well wishes.  Lauren is a nurse, and could empathize with all we are going through.  I am amazed that, at this time of year when schedules are so full and there is so much that needs to get done, my friends are so willing to sacrifice other things to make time to visit us.  Thank you!

 A volunteer brought by a stack of mail for Isaac.  He even tried to help me open a few of the envelopes.  I am simply astounded by the immense generosity and outpouring of love being shown to Isaac and our family.  Every single letter matters.  I am humbled by the selfless donations.

 I hang all of his letters up on what I designated the Well Wishes Wall in his room.

I thought that after extubation and moving from the ICU, Isaac would be almost better.  I was dead wrong.  I was completely unprepared for the road we are now travelling.  All day yesterday and all day today, Isaac remained completely unresponsive.  He refused to acknowledge anyone in the room.  He refused to answer my questions.  He will not play with me.  He will not talk or eat or smile.  Trying to care for and help this child whom I feel like I do not know has been incredibly difficult for me emotionally and mentally.  The many therapists that visited us today were all in an effort to bring Isaac back.  The Speech Therapist helped me understand what we are dealing with.  She explained that getting Isaac back to normal is like working through the alphabet.  "You are expecting Z and we are starting to work on A.  We have a lot of steps and a lot of work in between."  She described how intensely confused and overwhelmed Isaac is feeling.  He doesn't know if it is day or night.  He doesn't know where he is or why.  He doesn't remember what happened to him.  All day every day he is inundated with strangers who want to touch him in ways that make him uncomfortable.  He is hurting and sick and doesn't feel well.  Regarding his non-responsive state she said simply, "Isaac has checked out."

 And then the kids came to visit.  As soon as Isaac realized they were there, he smiled - a real, sincere, legitimate smile.  And then, for the first time in 9 days, he spoke.  He said real words.  As I heard them, I stood in the corner and sobbed.  I was overcome by how relieved I felt that he was really in there somewhere. 

 And then, for the first time in 9 days he opened his mouth to let food go inside.  We have tried and tried to convince him to eat.  After he removed his own feeding tube, the nurses and I coached and coaxed trying to get him to eat anything at all.  When he refused for hours and hours, and they could not administer his oral medication, they had to reinsert the feeding tube.  But tonight, he opened his mouth and tasted the treat daddy had brought with him (thanks Shari!!)

 I can't look at this picture without crying.  As hard as things have been, and even with the realization that we have 25 out of 26 letters still to go, when I see this picture, I know we will get there.  I know that with time and patience, Isaac will get better.

 Isaac lasted for about three minutes, and then he quietly shut down again.  He retreated back inside and would not smile, talk, or eat for the rest of the night.  He didn't even acknowledge this dog when he came for a visit.

 Another visitor knocked on the door and Jeff and I were invited downstairs.  We left Daisy with silent, sullen Isaac and found the entire Young Men and Young Women's organizations from our ward there in the lobby to visit and cheer us up.  They offered words of encouragement, and just seeing their familiar faces was so comforting.  I know that their offers to help are sincere, and I am realizing that the length of this journey is going to require a lot of help along the way.

When we returned back upstairs we decided to take Isaac for a ride.  We unhooked all of the tubes and monitors.  We carefully lifted him into the wheelchair.  I pushed the IV pole.  Levi pushed the oxygen tank.  Daisy pushed Isaac. 

 

We attempted to go to the Family Room hoping we could be together in a place that felt less like a hospital.  Our goals were too high, however, and the trip across the 3rd floor was too much for Isaac.  Our hopes for a family dinner ended in disaster.  We quickly made our way back to his room and tried to get Isaac as comfortable as possible. 

 

On our way home tonight, Daisy was crying as she expressed her feelings to me.  "Why did Heavenly Father do this to us?" she asked, sincerely searching for an answer.  My heart was pleading to God for help to know how to answer her.  As I started to explain that sometimes we don't understand why bad things happen, she said, "I just don't know why it couldn't have happened to me instead."  I cried familiar tears as I thought about how many times I had experienced those exact same feelings over the past 9 days.  If only I could bear the pain for Isaac, I would do it in a heartbeat.  As I listened to Daisy's sincere heartache in seeing her brother hurt so much, I understood a little more of how our Savior feels about each of us.  I watched the tears stream down her 9-year-old face and thought of the absolutely perfect love Jesus Christ has for each of us.  I felt a profound sense of gratitude in the indescribable power of His Atonement which enables Him not only to succor me in my time of need, but through which He suffered the pains of my beautiful children.  I am eternally thankful for all He is for me, and for all He did for them.