Day 2 of Brain Surgery-Super Zayne

Day 2 of Brain surgery.

 

He slept most of the night, my sister and I on the other hand not so much.  The nurse came in every hour on the dot.  I wasn’t looking forward to the morning knowing Zayne couldn’t eat anything until after his MRI.  He quit eating Wednesday at 9pm.  So the next morning was Friday.  He didn’t wake up enough to eat anything but a couple bites of pudding the day of surgery, so now going another 12 hours plus some was going to be brutal.  His MRI was scheduled for 10:30am.  I was really bummed it wasn’t 7am.  That would have been difficult already but to bypass breakfast almost into lunch was gonna be a task.  He woke up around 7:30 and said he was hungry.  I told him we had to wait until after the pictures of his brain before he could eat.  He didn’t put up too much of a fuss and quickly went back to sleep.  I was thankful.  After the disheartening news yesterday I didn’t have much in me to tell this kid no.  10:30 came and went.  Around 11am I went out and asked the nurse when they were going to come and get him.  She said she already called and they were running a little behind.  My stomach turned and I walked quietly back into the room hoping not to wake him.  If he slept til they came to get him it would be ok.  He was going on 38 hours with no food.  And my son…..doesn’t do no food well.  I looked over at my husband with a worried look and told him the news.  Zayne started to stir.  “Mom….”  He said already looking very uncomfortable.  “Yea baby?”  I went to his side and rubbed his arm.   Not being able to use the left side of his face well it came out so mumbled I couldn’t make it out.  “What baby?”  His eyebrows came together as if he was in pain.  I felt I couldn’t read him well.  The last brain surgery went so unbelievably well I was almost off my game trying to know what he needed.  “Mints please.”  My heart twisted with pain.  He wanted his junior mints his GG had gotten him.  He was hungry.   I spoke in the softest voice I had, “Just a little longer and they will come get you for your pictures sweetie.   And then you can eat whatever you want!!”  He pulled his right arm out of the covers and in the most pitiful gesture held out his hand in front of him.  His eyes were still closed and he said almost in tears “Mints please…..mints mom?”  I started crying knowing how hungry he was and just wanting to be able to take the pain away.  I can’t imagine how his stomach felt.  All the pain meds with no eating.  It had to be awful. He started to cry.  It was not a mad cry.  He was hurting.  I just didn’t know if his stomach was burning or if he needed pain meds for his head.  The feeling inside me made me sick.  I couldn’t do a damn thing for my boy who just had his head cut open.  He is so little.  And I couldn’t even comfort him.  I looked up at the clock…12:45pm.  I went back out to the nurse’s station while wiping my tears away.  “He’s miserable.  I don’t understand what’s taking so long.  We had a slot at 10:30… it’s almost 1.  He’s 6.  He hasn’t eaten since Wednesday night.  I’m gonna email Dr. Sandberg and tell him if they don’t get us in, in an hour I’m feeding him.”  The nurse kinda looked at me oddly.  “Let me go get the charge…hold on.”  I didn’t know what she meant by that but I waited.  A lady came out who I assumed was over all the nurses.  I told her my problem through tears.  I knew Zayne was in the room crying and in pain.  She called down to MRI and I stood there and listened to the conversation.  She was as mad as I was.  I gathered through the conversation that they thought he was an add in, meaning he wasn’t really on the schedule.  “Do you realize he is a little boy?  He is 6 years old.  I know that would be hard for an adult let alone a child.”  She was not happy.  She hung up the phone.  “You email the surgeon, maybe he can get something done faster.”  I nodded my head and asked everyone to stay out of our room so he would hopefully go back to sleep until they came.  I walked back into the room to Zayne screaming.  I couldn’t breathe.  My husband was almost to a breaking point.  “Baby, baby…”  I rushed over to Zayne’s side.  “It’s ok sweetie. I’m right here kiddo.  It’s ok.”  He rolled back and forth…”MOM…my stomach…..my stomach…” he screamed.  I wracked my brain for how to hold onto my sanity in this moment.  Did he need pain meds or would that make it worse?  Is it really his stomach or is his head hurting?  Zayne has had cronic headaches for 3 years now.  He has done a good job of teaching himself coping mechanisms.  Food being one of them.  If he says he is hungry after a meal I know a headache is on the way.  But this time it could be absolutely legit.  He’s starving.  As a mom I found myself not knowing what my son needed.  And as a parent that is the ultimate torture.  Especially when there is screaming and crying. I found myself trying to zone out.  Trying to just sit and be there but not so much that I lose my mind not knowing how to help my boy.  After 30 min. of screaming how hungry he was and tossing in the bed he drifting off to sleep.  I sat there looking at him.  My emotions that had been behind a wall for the past half hour came out.  I put my head between my knees and cried.  I felt as though I was gonna have my own heart problems if I didn’t find an outlet.  My body shook with each sob I tried to keep quiet.  He lay there sleeping but his expression still one of that in pain.  I reached out and softly touched his hand.  God….help me.  I can’t do this.  I can’t watch this.  Nothing about this surgery has been ok.  Help me.  I need to be here for him.  I can’t go down.  You HAVE to help me.  My plea’s turned into demands.  You said you would be here.  You told me this was the way to go. That we were supposed to be in Texas.  Now my boy can’t move his body.  Father….PLEASE.  The pain has to stop.  I need to breathe. You can take this away.  I know you can.  DO IT.  DO IT DAMN IT.  He’s so young…Be who you told me you would be.

The nurse opened the door and I quickly ran over to her and shuffled her out the door.  “I will talk to you out here.  What is going on?”  She looked at me sympathetically and said “The surgeon is on the phone for you.”  I walked over and picked up the receiver.  “This is Jessica”  “Jessica it’s Dr. Sandberg, I’m so sorry he hasn’t been taken down to MRI yet.  I’m very disappointed and have been calling regularly.  I will call again, but please do not feed him.  I know you want to and as a mother you just want to fix things. But we need to see how his brain is and make sure there is no swelling.  This needs to be done.  Do you understand what I’m saying?”  I started to cry again.  “I understand but then they need to get this done. I can’t do this anymore. This is not ok.”  I held the phone tightly to my ear trying to control my emotion.  “I know, I know, I’m so sorry.  I’m going to call again.”  I got off the phone and turned toward the nurse.  “Who do I need to talk to, this is ridiculous.”  Moments later I was talking to a social worker and she was handing me a card to contact someone in patient advocate.   I held onto the card as I told her of my story.  After a couple minutes I went back into the room to see Zayne stirring.  It was going on 2pm.  The anger that wrapped around me seemed to be almost materializing.  I felt my muscles tense and my lips become tight.  “MOM…”  I felt like a different person walking to his bedside.  One with vengeance.  “I’m right here bud.”  He tossed and turned and began screaming of his stomach again.  To sit here and write about the next half hour would not only be brutal on you but me as well.  Even trying to go back to that day now makes me sick to my stomach.  30 minutes passed and he finally drifted off again.  I simply sat there feeling hot angry tears roll down my face.  My stomach felt like a rock.  I got out of my chair once more.  I walked toward the door fearing what was going to come out my mouth.   As I put my hand on the door to step out to the nurses station I almost felt bad for the person who was to get my wrath.  I stepped outside breathing hard.   I saw a girl walk by in a tech uniform, she looked at me and said “I’m here to take Zayne down to MRI.”  My anger disappeared so fast I almost dropped to my knees.  I exhaled as I pulled her in for a hug.  “Oh my goodness,  you ok Ma’am?”  I pulled back and smiled at her.  “We’ve been waiting for so long….yes let’s get him”  She was a mother as well and as I told her my story she became more determined to get him down there as soon as possible.  She was supposed to wait for another tech to come help and decided the poor boy had waited long enough.  As we wheeled his bed out of his room I grabbed his hand and walked beside him.  “We are going to get your pictures baby!”  I said through happy tears.  I looked up at the clock it was going on 3pm.  Jake and I walked with him down to the MRI room.  Through talking to the nurse they weren’t even aware he was an ICU patient.  They weren’t told his age.  Someone dropped the ball.  I couldn’t take anymore.  I looked at my husband and we agreed Jake would be the one to be with him while they put him to sleep. Only 1 parent could take him back.  I kissed his forehead and looked in his eyes.  “I love you baby, I will have a chocolate pudding waiting for you when you get out.  Ok?”  He nodded his head and looked off into space.  I leaned closer to his ear, tears rolled down my nose.  “I’m so sorry baby, I’m so sorry.”  I looked at my husband. The look that we exchanged was so short but meant so much.  My look said Are you sure you’re ok? I can stay.  And his face said I’m nervous but I got this, go take some time.  I winked at him with tears in my eyes and walked out.