Monday, July 2nd - Tuesday, July 3rd

With tears in my eyes and shaking hands I'm posting this blog, so if it doesn't make sense or has errors you will know why. Tyson has taken over the blog because to put this into words it is too hard for me.

Wednesday morning Garak is still with us and we are treasuring every moment we have with him. Garak has been held constantly and he seems to be completely at peace. His sweet eyes open a few times each day and once they are opened everyone gathers around him to look at his big sweet blue eyes. People are saying Garak is finally at peace and enjoying being held and that is why he is still with us, I completely love this idea and am loving the time with him. I am amazed by how much love Garak is giving us, even at his weakest moments. He has such a strong spirit and is doing everything he can to make this easier for us.

Monday morning he had a few seizure like episodes. We called his hospice nurses and decided once again to give him Keppra (seizure med)twice a day. Once we started the Keppra he did not have any more of these seizures. We also have started giving him the Hydromorphone and Lorazapam every 4 hours. When we came home we were only giving him these meds when we felt like he was in distress, but now we give it routinely.

At night we take shifts on being awake with him, not only do we want to be there when he passes, but we have opted to have him go through an autopsy. The department head of the neurology department at Primary's believe there is a 50/50 chance that they may find something regarding his conditions. I think the only reason we decided to do it was to help our other children, to know if this was a possibility for their children in the future. Like the decision to feed Garak or not, this was another extremely hard decision we had to make. The thought of him going through this is something I can't think of and try to push out of my mind.

Tuesday morning we met with the mortuary company and because of this it was an extremely hard morning. I think Tyson and I both knew it was going to be extremely hard, but no one can prepare you for how horrible it really is. This is one thing that no parent should ever have to do and never even think of. I can't go more into this because again it is something I can not think about at this time and is extremely emotional for me.

We have had so many family and friends visiting expressing their love for Garak. I am in awe with how many people, people I don't even know, love this little boy. He truly is an amazing baby who has brought so much love to so many people.

Last night Michelle arrived with our family pictures which were taken Saturday evening. I was amazed by how perfect each picture was. There were some that even looked like there were angels with us during it. I am so grateful for a wonderful and amazing friend that has such talent to make these pictures perfect. These pictures are so precious to me and will be in multiple rooms of my home for the rest of my life.

Sunday, July 1st

We were able to get family pictures, which made his mom very, very happy.

Though Garak may pass at any time, it's nighttime when we are the most worried.    We try to take turns between sleeping and watching him closely.   Early Sunday morning, his breathing was very low and his heartbeat was in the fifties.  His hands were cold, and his lips were white.  We thought it was near time.   While the house still slept, we went into the backyard and sat together on the porch bench with a blanket.   Garak always found calm outside.  It would make for a beautiful moment if Garak passed away listening to the birds with a little breeze.  Being outside would also curb his four year old brother Kyler's concern that Garak can't get to heaven if the ceiling is in the way.   We watched the sunrise hit the west hills, and watched the birds do their thing.   


We watched Garak's sucking-motions slow, his eyes were moving around slowly but erratically.   His mom whispered, thanking him for staying so long, thanking him for letting her get the photos she wanted.   She whispered that is was alright, telling him he could go now.  His eyes stopped moving and they stared straight up.  I kept staring, but his mom started a new cry.  For thirty seconds it seemed he was no longer there.   Then the dork started that sucking a pacifier gesture again.  For the rest of the day, he seemed strong.   His heart rate and oxygen saturation were about normal.  We don't know why he stays, he has given us all the love he could give, and he has hopefully accepted all the love we gave to him.   He served us well, all the while he suffered.   He needs go and find peace.

Saturday, June 30th

We came home with Garak last night.   Our options were to leave the ICU and be transferred to either the regular infant unit at Primary's or Riverton Hospital, or we could take him home.   There was no telling how long Garak had and we had been away from home for too long.  On the advice of the Child Life counselors, we spoke with each child and asked them how they would feel if we brought Garak home to them as he died.   Tregan was very happy, while the other boys agreed this was what they wanted, but you could tell it made them nervous.

Before leaving we tried our hardest to get all the information we could to paint a picture of our days to come.    There were all sort of theories describing different ways he would pass.   Nothing seemed cruel, he is not in pain, and we can administer Dilaudid as needed to comfort him when he appears in distress.   The downside of the narcotic is that it slows his breathing way down.  Each time it's administered, Garak appears to go somewhere else.

We left the hospital with the POLST order (Physician Order for Life Sustaining Treatment), which we need in case paramedics see Garak in distress.  They say sometimes neighbors call 911, and if this order is not presented, they are required to resuscitate.

We were told that we didn't have to use a car seat coming home.  I am assuming the POLST Order would work as proof we deserve special treatment.   It's too bad Garak didn't appreciate being in the front seat in his mother's arms.   I was ready to flip the bird to anyone judging us.

Not until this morning, and after having spoken with tens of people with experience, have we agreed to not feed Garak.   As it ways, he still hadn't been fed since the tube was pulled, and he still seems content.   His hunger sense is broken.   That's a blessing.  

There are a lot of ways of intervening when Garak is appearing in distress.  It's difficult to know if providing some assistance is just comforting him, or prolonging his suffering.  Do you clear some fluids from his mouth, or let the breathing difficulty tire him out?   Jailyn has agreed to permanently remove feedings if I don't mind that she clears his mouth if it's bad.   We were provided a little medical vacuum, and we also have oxygen in case we can't go through with this.

Last night was pleasant, he slept in our bed through the night without complaint.   He constantly makes a cute snoring sound, letting us know he still likes it here.

Karen Miller made a hair appointment house call today as we would like to get family pictures today and Jailyn is not going to be leaving the house anytime soon.   I believe Michelle Perry moved back to Utah specifically so she could take our picture.  It's the least she could do.  While Karen continued working on Jailyn's hair, Jailyn administered the Dilaudid while Stephanie James held Garak.   Some pretty serious multi-tasking.  I must have been busy.  After getting the narcotic, he slowed his breathing way down.   As it is, his breathing and heart rate have already slowed down.   His hands and feet feel colder, confirmation he is getting tired.    The hospice nurse believes we have hours to maybe days left.   We have an hour until the photo shoot.   We wonder if we should move it up.

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)

Wednesday, June 27th

Today has been the hardest day yet.  They ran another MRI to look for brain damage.   The first MRI was ran too soon to see the true affect of this incident.  With the first one, we heard the result almost in passing as nothing was found, and thus didn't warrant any conversion.  This time was different.  I hear they want to speak about the results, which in itself is a bad clue.  Then when I walk into Garak's room I see the crisis counselor waiting with the Doctor. The NP and Nurse are also present and they are scrambling to find chairs, another ominous clue.   The Doctor explains they found some massive evidence his brain went without oxygen/blood-flow.  He tells us he will never be the same.
He also points is to the EEG readings and explains that with the amount of sedative that they have stopped administering, Garak should no longer have the flat readings he's producing.  His brain just isn't firing.  He still has some strong drugs in his system that can relax the EEG a bit, but not to the degree we are seeing.
Neurology estimates his brain lacked the right blood-flow for about 30 minutes.  It's a bit of a mystery why only his brain & liver have been affected. 

Despite being on a respirator, they let Jailyn hold him the rest of the day.  The boys came up and were explained that Garak will be going to heaven soon.  Kyler asked why a lot, then said "goodbye Garak."

Now has come the time we are supposed to make the impossible decision.

Tuesday, June 26th

This morning when I walked in the PICU I noticed there were a lot of people around Garak's crib. He was in a 20 minute seizure and everyone was trying to get him to come out of it. After a lot of Ativan and a loading dose of Phenabarbital the seizure finally subsided. Shortly after, neurology came up and looked at the EEG. The attending doctors and the neurologist were very confused regarding his actions and the EEG. His actions were very rhythmatic, he had a jerking backward action which happened five times lasting anywhere from two to twenty-two minutes. However, the EEG did not show elevated spikes which would be consistent of a seizure. So, the theory is that he may be so sedated that the sedation meds are covering up the EEG or that his body is reacting to the meds. At this point that are not sure, so the plan is to continually decrease the meds and get his phenabarbital level (which is 50) down, so they can see how he truely acts on his own without any meds. Regarding his liver, the liver enzyme test keeps getting higher. Today the numbers were 6000 and 7000. This is very concerning to them, but they are hoping it will eventually peak and drop. This enzyme in the blood is the indication that the Liver was damaged. It's not an indicator of liver failure, unless it doesn't start to go down soon. They sent out at least 30 labs today for all different types of disorders. These came from the handful of departments that have meant with us and helping to figure out Garak's issues. Most all of these are extremely rare disorders, but they feel at this point whatever he has is something very rare. There is a theory about a disorder that he was tested for yesterday. The result came back very high, but is not conclusive yet. The disorder is HLH - Hemophagocytic Lymphohistiocytosis. A quick summary of this disorder is that he has too many white-blood cells that have accumulated in the tissue of organs like the liver, spleen, spinal cord. These cells hang out waiting for an infection, but in this case, too many have hung out and they're affecting the organ(s). While they said his HLH result was way high, they said his Sodium level changes don't quite match that theory. Hematologist/Oncologist came in to talk to us today about this disorder and what it means. They will be sending off test for this, but they will take a couple weeks to get back. Until then, there is another test they can run from his bone marrow that can tell us if he has this disorder, however, if this comes back normal it will not rule this disorder out. They are planning on taking bone marrow from his nip tomorrow. He also has a MRI scheduled for tomorrow morning. Since they fear the lack of oxygen caused severe brain damage, they are doing another MRI tomorrow to look at his brain again. We were told that oxygen damage to the brain sometimes does not reveal itself the day it happens, but after 2-3 days (which tomorrow will be the 5th day) it for sure will reveal itself. We are praying this comes back normal!!

Monday, June 25th

Monday morning they had a shift change of doctors and today's doctor, Dr. Bennett, seemed a lot more positive then Dr. Chan (doctor from Saturday and Sunday). Dr. Bennett brought in a lot more new ideas and new things they could test for. He wanted to give us hope, not false hope, but a little hope. He said that Garak is in critical condition, his situation and all the complications he is having are life threatening, but he is optimistic that he can possibly recover from everything. This was a breath of fresh air and we welcomed the positive attitude. Today they send it many many labs, too many to even keep track of, but we are hoping things will start to improve soon. Dr. Bennett thought it was very worthwhile to involve some of the other departments besides the PICU and neurology. So today we saw a handful of other specialists. Infection dept, genetics dept, liver team and the pediatric surgeons all came to look in on him. They all are working on his case and bring to life some of their own theories as to what is going on. Each department has requested labs on different type of things so we once again we have to just wait for labs to return. Tomorrow they plan on weaning him off some of the sedation meds to see how is acts. So we are very hopeful that tomorrow will be a really good day for him!