Obituary for Garak Tyson Emmett

Garak Tyson Emmett became our angel when he returned to his heavenly home peacefully in the arms of his parents Sunday morning, June 29, 2012. We were blessed to have our sweet Garak in our arms for over ten months where we treasured every moment with him.

Garak is deeply loved by his parents, Jailyn and Tyson Emmett; his four supportive big brothers, Tregan, Lincoln, McCade and Kyler Emmett; his grandparents, aunts and uncles, cousins and countless others that got to know him through all of his medical challenges and his determination to show everyone how strong and incredibly amazing he is. Garak will forever be our precious angel and will always be an example to everyone.

Garak is preceded in death by his grandfather, David Thomas Emmett.

A Viewing will be held on Saturday, August 4, 2012 at 11:00am at his Chapel at 2181 Harvest Moon Drive in Saratoga Springs, Utah, where a Funeral Service will follow to celebrate Garak beginning at 1:00 pm.

Interment will follow the Funeral Service in the Orem City Cemetery located at 1520 N. 800 E. in Orem, Utah.

Arrangements are under the direction of Matt Davis with Utah Valley Mortuary, 988 South 490 West, Pleasant Grove, Utah 84062, 801-796-3503.

Sunday July 29, 2012

Saturday, July 28

It's been a long time since either Tyson or I have updated this blog with any type of information.  There has been a lot going on each day, but the closer it gets, the more pain he is in, the weaker he becomes and the longer it goes; the harder it becomes to put anything into words.

Garak has been in a lot more pain then he previously was in.  Due to his brain damage he has been 'storming'.  This basically is a 'storm' of electrical activity which interferes with the brains' autonomic functions.  This is heart wrenching to watch our sweet baby go through.  Garak's heart rate jumps to above 180+, his temperature spikes really high and he postures a LOT (posturing...meaning his limbs go extremely stiff and his muscles start to spasm).  After the spasms his whole body begins to shake as if he were shivering, but it is more intense and lasts a long time.  The neurologist say this is an extremely painful process.  Due to this, we have increased his meds over the past few weeks.  When we first came home, we injected Garak with hydromorphone (similar to morphine) and lorazepam when we felt like he was agitated or in distress.  Within a week we increased to every 3-4 hours.  Over the past two and a half weeks we increased to almost every hour.  July 18 we put a medication pump on him that continually pumped both meds into him continually.  Since July 18 we have increased the amount of meds we continually give him to 5x the amount we started with.

Last Tuesday through Friday we thought were going to be his final days.  The hospice nurses told us once his oxygen levels dropped to the low 70s and into the 60s he would pass away very quickly.  Tuesday afternoon his levels dropped to the low 60s high 50s.  The hospice nurse took vitals and told us that he had hours to live.  I called my family to have them come say their final goodbyes.  While a couple of my sisters were there his oxygen level went down to 18 and we thought for sure it was going to be his last moment, but he rebounded.  Later that evening once everyone had left Tyson, me and the boys sat around Garak just waiting.  All night we watched the monitor and held Garak and his oxygen levels remained extremely low.  At 4am that morning his heart rate decreased to the 60s and again we thought he was going to go, but again he rebounded and his heart held steady.  During the next day, Wednesday July 18, he had 3 more events where both his oxygen levels and heart rate dropped off the monitor.  For at least 60-120 seconds (which felt like like an eternity) we thought he was gone; we thought he had taken his last breath and that his heart had given out.  He then came back with a huge breath and his heart started beating again at the normal rate. For the next 2 days his oxygen level remained extremely low, between 1 and 50.  Everyone thought he would go at any time.  On Saturday, he once again rebounded and his oxygen level and heart rate went up to normal.

With Garak holding on for so long and fighting so hard it makes me wonder and question everything and everyone.  The things I know for certain is that I love my sweet baby boy more than words could ever state,  I do not want him to be in pain, and I want to do whatever is best for Garak!  I've had thought about feeding Garak so many times, wondering if he would want to stay here with us or if he would be happier in a perfect heaven.  This past Monday we had a pediatric specialist come out and Tuesday we had a doctor come out to discuss the pros and cons of feeding him (again).  Each day I would decide to do the opposite of what I decided the day before.  On Wednesday I realized the reason I continue to go back and forth on whether we should feed him or not is because it is an IMPOSSIBLE decision, and it is one that I can not make.  I had an amazing friend tell me because this decision is so hard for me, I should lean on my husband and what he thinks would be best for our sweet Garak and to use him as my crutch.  So, thank goodness for an amazing husband who has been my rock during the worst month of my life; and who wants what is best for our sweet baby and is trying to do what Garak would want us to do.

On Monday, Garaks central line (the line we were injecting meds into) was pulled out.  The nurses saved it very coming completely out and we were able to use it for a few more days.  Yesterday, the few millimeters that were left in of the line came out, this was very disheartening.  We had 3 options at this point. First, we could go to PCMC to have a radiologist insert a PICC line.  We weren't even sure this would work since he is so dehydrated.  Second, we could put a line in underneath his skin where the meds could absorb into his body.  Normally they do not put these types of lines into babies due to their skin differences, but because Garak has no fat to absorb the meds we were more concerned about the meds not absorbing and clotting then anything.  Third, we could do rectally or orally but since he can not swallow and his intestines had shut down neither of these options were very good.  We opted to go with the second option, opted out of putting Garak through a medical procedure, hoping the lines would work.  One of his nurses came and inserted 2 lines into both his legs, one for each meds, unfortunately we discovered today that one of the lines were  clotting and not absorbing.  At this point, the only option we had left was to go to PCMC.  So, this afternoon we went and after many attempts on his arms and legs they finally were able to place a PICC line in his jugular vein in his neck.  Normally, they do not allow parents in the radiology room (or the Jazz Room, which will explain the Jazz bear on the wall of the picture below) while they place PICC lines.  Since PICC lines are in one of the four main veins that lead directly into the heart, they need to keep the room clean and sterile; but due to our circumstance and the fact that Garak could have passed while they were trying to place the line they allowed both Tyson and I in the room.  Once we pulled both the lines out of his legs we noticed the other line also was clotting and not working.


Since Thursday Garak has declined on how he looks and sounds.  His lungs are very 'junky' sounding and nurses continue to tell us he has what they call the "death rattle".  The nurses are not giving us predictions on whether or not Garak will make it through the night any more.  They all feel really bad that they continue to tell us he has hours left when he continues to hold on for days, but both Tyson and I would rather know the worst possible scenario and be prepared.  We now know the Garak defies all odds an is one strong amazing little boy!! One nurse was very sweet Thursday night and said 'In most cases we would be calling the hospice nurse that evening due to Garak passing, however, this is Garak and Garak is on his own timeline."   So, until Garak decides it is his time to go, we will continue to hold him and treasure these moments we have with him!

Friday, July 20th

Today is Garak's 10 month birthday.  

Tuesday, July 10th

Two weeks ago today the neurologists told us that they were going to be doing another MRI because of the possibility of brain damage.   I never thought in my worst nightmare we would be where we are today. The past two weeks have been extremely hard and agonizing, but in the midst our devastation we have seen numerous acts of love and support. We are really blessed to have so many family, friends, neighbors and even people we have not met praying for us and showing us their love through so many different ways. 

Garak has held on so long that many people have been able to come hold him and to say goodbye to him. Tyson's sister Kelley flew in the day after we arrived home from the hospital and spent the week with us, her family arrived a few days after Kelley.  The rest of Tyson's family also came into town this past Thursday and were able to spend a few days with us.  To have Tyson's family here was such a blessing for both Tyson and I during this time. We also were able to enjoy the 4th of July as a family. My boys were really excited that Garak was with us to do fireworks. Both Lincoln and McCade mentioned that Garak was able to experience every holiday now, I agreed and didn't remind them of Labor Day.

With Garak holding on for so long, I have to wonder if the decisions we have made are the right ones for Garak. I always thought that if my children, Tyson or myself had the amount of brain damage Garak has I would want them to go back to their Heavenly home.  I would want them to be happy and be able to do anything they want. I always believed keeping anyone here in that type of state of mind would be a horrible prison to them, where they would be stuck with no decision of their own. Now, actually facing this decision, I never knew how unimaginable this decision would actually be. I would like more than anything to have him better and to forget these past few weeks ever happened.  Garak not reacting to anything reminds me that Garak is not the same.

Since Garak was born, we worried constantly as to what Garak would or would not be able to do; we worried about if he would be able to walk or talk.  We wondered if he would be able to see us or be able to communicate with us.  Now I realize, him being able to smile at me and to know I was holding him or kissing him was all I ever needed. I would give anything to have those few things back.

The past two days I have gotten away from everyone and everything for a couple of hours and have been able to hold Garak in sweet quiet places outside my home. These are moments that I will always treasure.

Late this afternoon we had an had an appointment with the neurologists to go over in detail Garak's previous MRI. We went frame by frame and looked at each MRI image they took of Garak's brain. They explained to me exactly what each area of the brain does and what it means for Garak. The radiologist described the damage as Diffuse Cytotoxic Edema, meaning the whole brain is going toxic and Necrosis will set in within the next few weeks.  Although I already saw these images while we were in the PICU, I did not realize the extent of damage.  I was hoping that there would still be some good portions of his brain left undamaged, giving a possibility where his brain could adapt, and he could learn to use what was left.  Unfortunately, the only portion of the brain that was not extremely damaged was the brain stem which controls heart rate, breathing and sleeping.  


Although it will never be any easier to let Garak go, after reviewing the MRI (again) does help me know it will be the best thing for Garak.

(Garak and cousin Channing)

(July 4th)

Sunday, July 8th

Garak's little body is strong.


For many consecutive days we were told that Garak wouldn't survive the night.  We were told his breathing would continue to weaken and his heart would continue to slow.  We were told the damaged portion of his brain would result in necrosis and spread to the good portions of his brain.  We were told he would aspirate his own saliva, contributing to choking or leading to pneumonia.  We were told his organs would react to the lack of brain signals, and would begin shutting down.   Yet he survives and appears to be stronger. His heart rate and oxygen saturation are healthy and lungs sound pretty good.    


We find ourselves questioning everything we have been told.   It was easier to withhold feeding if his death was imminent and food may cause discomfort as his body shuts down.   There was some comfort in knowing his body was making this decision and not us.   If he wants to live, and appears to be improving, shouldn't we resume feeding him?

They may have been wrong about his body, but the end-all factor is his brain.   The hospice team asked our neurologist to call.    She spoke with Jailyn and offered to go over each image of the MRI, and explain what functions were affected by the damage.   The doctor told Jailyn that Garak's brain wasn't just damaged, it was "very, very, very damaged."   If we fed Garak, he could last a couple of years, but he would never improve.   He may even begin to twitch and shake uncontrollably as he grew.  This put us back into the frame of mind that Garak is not coming back. If we held him onto this existence, the image of the beautiful, sleeping boy may be replaced by someone in pain.   It's now completely up to us to determine how long Garak lives.

Jailyn and I have gotten along pretty well through all this.   We fight about how long to water the lawn, but our disagreement on whether to sustain our child has not led to any real quarrel between us.  I understand that as a mother, she is programmed to protect her children.  It's just a matter of realizing if sustaining Garak for a couple of more years while his body changes, his muscles shake, and he faces infection all the while his mind remains absent, is really protecting him.

Yesterday, Jailyn decided she would continue this course.  She took the decision to not feed him with her to the temple, from where she prayed.   She returned with a calm feeling, that we were making the right decision.  She felt that Garak indeed wanted to return to his Heavenly Father.

It has been ten days since he has been fed.

(Garak with cousin Tessa)

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.