Thursday, June 28th - Friday, June 29th

At the time of this writing, Garak is still with us.  He can't make up his mind.

We were brought into a small room with soft cushy chairs.   The Doctor, NPs, Nurse and the Counselor were in attendance.    It's been less than a day, but I can't recall a single quote from that meeting.  Every moment afterwards have been an emotional trainwreck, blocking my memory.   The outcome in this meeting was us giving our consent to let him go.    They let us linger in that office, as we weren't fit to for public display.

We called Jailyn's parents to ask that they bring the kids up for a final goodbye.   We also invited Garak's second-mom Stephanie.  Jailyn's sisters, parents and brother in-laws also said goodbye.

Each brother took turns holding him.  The hospital's Child Life counselors helped us make color stamps of each brother's foot, next to a stamp of Garak's swollen fat piggie foot.   They also made a plaster cast of Garak's hand.   The boys were then taken by the Counselors who again spoke with each one.   They wrote messages for Garak on balloons then went to the hospital roof to let them go.   The boys walked back in and kissed Garak on the head and said goodbye one last time.

I handed Garak back to his mom.  She rocked him.  Our Bishop and a Councilor arrived.   She continued her time with him as everyone waited for her word when to begin.   During the wait, our nurse assisted cutting off some of his red hair for keepsake.    This paragraph is short, but it cannot describe the feelings, thoughts, emotions of making a decision to end your child's life.   He seems fine, he's just napping.   He is just napping, but for a week.  He is finally relaxed and not complaining.  He's still our big blued-eyed little Gare-Bear.   I feel sorry for myself more than I feel sad for him.   I think of my feelings when I cry.  I feel selfish.   I have to remember that he may never wake up again.  He may already be gone, and who am I to force him to stay.   

It took another hour for Jailyn to say ok.   It was about 5:30pm when I informed the nurse who paged his team.   The Doctor, NP, and Councilor were on hand as the Respiratory Tech and Nurse removed his breathing tube.   Jailyn held him and rocked him as he gasped for air on his own.   The sounds he made were frightening.  It was like a fish out of water.   There was no reason to believe we were not watching our Son die right then.  Everyone was crying as he gagged.   He won the struggle, and  relaxed.   They told us he could give in immediately, or an hour, or a day, or weeks.   Now we wait.  

The medical team left the room, and Jailyn continued rocking the tired guy.   We took pictures of his face as we hadn't seen it in a week without tape over his mouth.    Jailyn washed him and discovered his first two teeth have come through.   It took about an hour to calm down.   One moment your child appears to be dying, struggling, but the next moment he is just sleeping calmly.    

Jailyn sang to him and rocked him as the Bishopric waited in the hallway.   We were delivered a bed/chair and Jailyn laid with him.   Jailyn resisted eating, but I was happy to have the Bishopric provided BK.  Jailyn fell asleep, and the Bishopric entertained my caffeine fueled tangents until they left at about 2am.

Garak would occasionally start making a congested sound.  He aspirates, has a bunch of fluid in his lungs and he can't cough.  He starts breathing rapidly.  We don't know if this is how it will go.   At some point I stopped waking up to those sounds.   Jailyn would often wake to see to discover he was still enjoying sleeping with her as much as she enjoyed this rare experience.   He wasn't crying, he was peaceful and comfortable in her arms.  

It is now 10am.   Garak had a hand-bath and his eyes were open for the first time in a week.   It was a happy moment, but contributes to our confusion.   If he were older you would see the change he has undergone and be assured he is not well.   With him already being under-developed and still an infant, he still looks like an infant, just really tired.

The hospital is going to move us out of the ICU.    I hope we still get a private room.   Our other option is to bring him home.   Jailyn and I are not on the same page.   I worry how the boys will react to seeing him again, and gaining the wrong expectation, and having again say goodbye.

He hasn't been fed since 6pm yesterday.   He hasn't complained one bit.   The old Garak wouldn't let you walk away without something in his mouth.   Do we start feeding him again, giving him more strength, prolonging the inevitable?   We want him comfortable, but I am not sure if he even cares for food anymore.  It sounds cruel to not feed him, but its also cruel to endure more choking episodes.

(older picture)