Saturday, August 4, 2012
Tuesday, July 31, 2012
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!
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 20, 2012
Tuesday, July 10, 2012
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 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 8, 2012
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.
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)
Wednesday, July 4, 2012
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.
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.
Monday, July 2, 2012
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.
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 30, 2012
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.
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.
Friday, June 29, 2012
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 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 27, 2012
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 26, 2012
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!
Sunday, June 24th
I have felt like we never receive good news, but Sunday morning was the worse news we have yet to receive. I always wondered how doctors break the news that there isn't anything more they can do for your child, Sunday morning I found out. The doctor was extremely calm and basically told us that within the next few days we would have to make some extremely hard decisions, ones that no parents should ever have to make. We were told that they believed Garak's liver was failing and on top of that, they believed Garak had suffered severe brain damage due to lack of oxygen. We knew that his liver was having issues. The liver enzyme levels were elevated to 500, normal is 100. We also knew that his platelets continued to drop, the lowest was in the 30's after two bags of plasma he went up to the high 60's. After two additional bags it was in the 90's. His coags and ffp also continue to drop as well. The coag (coagulation) is blood clotting, the ffp is the time it takes the blood to clott. The brain damage came by surprise to us. Since the MRI came back normal the day before we did not think he suffered any brain damage. Unfortunately, throughout the night Garak continued to do neuro posturing. Small movements with his arms and legs that are not normal, especially being as sedated as he was. After receiving this type of news, your mind races to things you should have done, things you didn't do, things you want to do. To say the least, this was the worst day of my life and it was just going to get harder. We decided we needed to tell the boys so that it did not come as a shock to them. This was horrible.... all the boys digested this information in their own way, but they all cried a lot.
Saturday, June 23rd
Saturday morning a little after 6am I was awoken by Garak sounding like he was gagging or trying to throw up. With the neesan, I knew this was a bad sound. Immediately, I realized I had laid him down in his crib 5 1/2 hours earlier, since he has never slept for more than two hours on his own, I knew something was wrong. When I took him out of his crib his eyes were rolled back in his head, he was lethargic, very limp, not breathing well and his skin was on fire. Since he had been running the high fever for basically 3 weeks I knew his temperature was extremely high. I took his temperature rectally, 105, 106, 107, 108, at that point I did not even wait for the temperature to stop, we grabbed the oxygen tank, hooked Garak up to the oxygen and speed to the Riverton's Hospital ER.
Within a minute of arriving in the ER at least a dozen people were hooking him up to every type of medical equipment in the room. When we arrived his oxygen had de-satted to high 40's to low 50's, and his blood pressure was 57/22. The respiratory technician pulled a oxygen mask and tried to get is oxygen stat up, but no matter how high they turned the oxygen up they could not get is oxygen stat above 60 (normal is 90-100). At this point they decided to put an oral intubation in him, which means they placed a tube into his lung to help him breathe. They also tried to put in an IV to help give him fluids and meds, but they could not, so they put in an I/O (IV through his bone marrow). They drew a lot of blood and started the works on him. It was clear that after a half hour whatever was happening to him was extremely life threatening, they decided to life flight him to Primary Children's PICU (Pediatric ICU) in Salt Lake. 
Once he arrived at Primary's everyone realized he was in a very long seizure. At this point we knew it had started at 6am (possibly earlier). By this time it was 9:30am so it had been going on for at least 3 1/2 hours. They gave him Versed which also has an amnesia property to it to help him forget about everything. They also gave him Ativan which is another sedating medicine. Unfortunately, neither of these meds stopped the seizure so the gave him a bolus of Keppra which did not stop it either. They then took him down for CT scan on his brain, an MRI and EEG. By 12:30pm the seizure finally stopped. The CT scan and MRI both came back normal, the EEG showed the seizure. The doctors at Primary's also did a LOT of blood work, but they are not sure what is causing the high fever. That evening the EEG looked good, the fever was down to 103.6 and he remained sedated as they looked for an infection.
Once he arrived at Primary's everyone realized he was in a very long seizure. At this point we knew it had started at 6am (possibly earlier). By this time it was 9:30am so it had been going on for at least 3 1/2 hours. They gave him Versed which also has an amnesia property to it to help him forget about everything. They also gave him Ativan which is another sedating medicine. Unfortunately, neither of these meds stopped the seizure so the gave him a bolus of Keppra which did not stop it either. They then took him down for CT scan on his brain, an MRI and EEG. By 12:30pm the seizure finally stopped. The CT scan and MRI both came back normal, the EEG showed the seizure. The doctors at Primary's also did a LOT of blood work, but they are not sure what is causing the high fever. That evening the EEG looked good, the fever was down to 103.6 and he remained sedated as they looked for an infection.
ER Visit/Pediatrician's Visit
On June 19th, five days after we returned home from the hospital for the G-tube, Garak was a little feisty and pulled his G-Tube out. The pediatric surgeons told us that this was a possibility, but said very rarely does this ever happen. Even more rare, was the balloon inside his stomach was fully inflated, so not only did the button come out, the 4ml balloon also came out. We took him to Primary Children's ER where they had to replace the tube. Because the tube had only been in for a week they had to x-ray the positioning of the tube to make sure the balloon was actually inside the stomach and not between the stomach and his outer wall.
While in the ER, we also brought up Garak's fever situation. Since Sunday, June17th his fever stayed between 102.8° and 103.6°. They drew his blood twice to do tests, but unfortunately the blood kept clotting so they were not able to do all the tests they wanted to. They were able to pull a CRP test to measure inflammation which tells them if he has some type of infection, but this test came back normal. Since the CRP test came back normal they felt comfortable to let us leave.
Two days later on June 21st, Garak had a temperature of 104.8°. At this point I felt like something was wrong, so I took him into his pediatrician. His pediatrician looked him over, and despite the high fever felt that he looked good. He diagnosed him with have Roseola (aka sixth disease). This is a viral illness in young kids, most commonly affecting those between 6 months and 2 years old. It usually is accompanied by several days of high fever, followed by a rash. At this point he did not have a rash, but that was the best conclusion they could come up with at this point. Knowing what I know now, I should have pushed for some testing and more answers, but thinking doctors know what they are doing (which I've now know most do not) I left the office.
While in the ER, we also brought up Garak's fever situation. Since Sunday, June17th his fever stayed between 102.8° and 103.6°. They drew his blood twice to do tests, but unfortunately the blood kept clotting so they were not able to do all the tests they wanted to. They were able to pull a CRP test to measure inflammation which tells them if he has some type of infection, but this test came back normal. Since the CRP test came back normal they felt comfortable to let us leave.
Two days later on June 21st, Garak had a temperature of 104.8°. At this point I felt like something was wrong, so I took him into his pediatrician. His pediatrician looked him over, and despite the high fever felt that he looked good. He diagnosed him with have Roseola (aka sixth disease). This is a viral illness in young kids, most commonly affecting those between 6 months and 2 years old. It usually is accompanied by several days of high fever, followed by a rash. At this point he did not have a rash, but that was the best conclusion they could come up with at this point. Knowing what I know now, I should have pushed for some testing and more answers, but thinking doctors know what they are doing (which I've now know most do not) I left the office.
G-Tube/Feeding Tube
Since the time we had to add Simply Thick to Garak's formula, Garak lost a lot of weight. In 3 weeks he lost just over a pound. Since he was already low in weight, losing the pound dropped him off their chart from three percentile to "zero". He was eating approx 20-24 ounces each day, once the Simply Thick was added that amount dropped down to 10-15 ounces. It was so thick for him to suck through the bottle, he just could not get enough volume. After 6 months of physicians inferring putting in a feeding tube we finally agreed. It was probably the best thing for him. At this time, we needed to figure out exactly what type of tube we wanted to Garak, we had the following two options.
Both type of tubes are reversible, meaning we can take them out any time we feel like he doesn't need them. However, the Nissen Fundoplication is not reversible so we will never be able to undo this. We opted to go with option 1. Since we will continue to try to feed him portions by mouth, he would continue to have the bad reflux. With doing option 1 we hope to eliminate his reflux to make him feel better.
- G-Tube with a Nissen Fundoplication: A gastric feeding tube (G-Tube) is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enternal nutrition. In the Nissen Fundoplication, the Gastric Fundus (upper part of the stomach) is wrapped around the lower end of the esophagus and stitched in place. This reinforces the closing function of the lower esophageal sphincter. The nissen is to help people with severe reflux, it prohibits anything from go back up. This will prohibit him from throwing up, burping and also having reflux (acid) go up.
- GJ-Tube: A Gastrojejunostomy tube is similar to the G-Tube, but once in the stomach is then threaded into the jejunum (the jejunum is the middle section of the small intestine)
Both type of tubes are reversible, meaning we can take them out any time we feel like he doesn't need them. However, the Nissen Fundoplication is not reversible so we will never be able to undo this. We opted to go with option 1. Since we will continue to try to feed him portions by mouth, he would continue to have the bad reflux. With doing option 1 we hope to eliminate his reflux to make him feel better.
On June 11th we went in to place the G-Tube and to have the Nissen done. We were told we would be in the hospital for 2 days, but right after surgery he came out with an extremely high fever again and lasted four days. Garak was also inconsolable, regardless of touching is hand/foot or rubbed his cheek or held him he would cry and cry. The nurses continued to give him morphine thinking he was in extreme pain. After 2 days they had to take him off morphine since they do not want infants on a hard drug for more than 48 hours. Once the morphine got out of his system, his demeanor improved tremendously. Since the only thing they changed was the morphine, the doctors believe he had a bad reaction to the morphine. They say some side effects small children and infants can experience on morphine is severe pain throughout their entire body and hallucinations. On June 14th we left the hospital and returned home. We were hoping with the feeding tube and the Nissen we would have a happy baby, but unfortunately that was not the case. Garak seemed to get fussier each day and his fever came back.
Since his bronchoscopy, his fever has remained very constant, the highest being at 104.6°. Despite the meds we gave him, we had not been able to drop it less than 100°.
Bronchoscopy and pH Probe
Due to the aspiration, they performed a bronchoscopy on May 29th. The had to sedate him in order to put the scope down into his lungs, they also wanted to check out his airway and stomach area during this time. His left lung was perfect, his right lung had a small amount of scar tissue, but it was very little compared to what they thought they would see. This was very good news.
Since he was getting sedated and had to be at the hospital anyway, they also did a pH Probe. The probe study was to measure the amount of reflux he was having. The results of the pH probe was very surprising. In 24 hours he had 126 episodes of level 3 reflux. Level 3 is the worst level of reflux anyone can have. The episodes lasted an average of 7.5 minutes, the smallest one lasting just over 5 minutes. From these results they determined that in those 24 hours he refluxed at least 15-18 hours.
Late that evening, Garak began to have a very high fever of 103°. They continued to give him meds to get the fever down, but it didn't seem like the meds were helping. They let Garak go home the following evening thinking the fever was not due to the scope, but perhaps his reaction to Aesthetics and morphine. They sent us home telling us to continue a Motrin/Tylenol regimen. He continued the fever for 7 days at which time they put him on Azithromycin, which is an antibiotic. They were pretty sure he had pneumonia due to the bronchoscopy. On June 5, after being on the antibiotic for 2 days the fever finally subsided.
Since he was getting sedated and had to be at the hospital anyway, they also did a pH Probe. The probe study was to measure the amount of reflux he was having. The results of the pH probe was very surprising. In 24 hours he had 126 episodes of level 3 reflux. Level 3 is the worst level of reflux anyone can have. The episodes lasted an average of 7.5 minutes, the smallest one lasting just over 5 minutes. From these results they determined that in those 24 hours he refluxed at least 15-18 hours.
Late that evening, Garak began to have a very high fever of 103°. They continued to give him meds to get the fever down, but it didn't seem like the meds were helping. They let Garak go home the following evening thinking the fever was not due to the scope, but perhaps his reaction to Aesthetics and morphine. They sent us home telling us to continue a Motrin/Tylenol regimen. He continued the fever for 7 days at which time they put him on Azithromycin, which is an antibiotic. They were pretty sure he had pneumonia due to the bronchoscopy. On June 5, after being on the antibiotic for 2 days the fever finally subsided.
Sleep Study, Swallow Study and Upper GI Study
With the lack of sleep Garak has been getting, the neurologist referred him to a pulmonary specialist. We had a sleeping study done on Garak which brought to life some new issues.
Below are the highlighted points of the sleeping study:
The swallow study was to see if he was aspirating his food, and if so, to what extent. When they were readying for the swallow study they warned us that they don't always capture an aspirating event. Unfortunately, after the 3rd swallow he aspirated his food. What he did they call a 'silent aspiration' which means he did not show any sign of aspirating (no coughing, no flaring nose, no gagging, etc). At this point, that stopped giving him the regular liquid and they tested a nectar consistency (basically just thickening it up). Again after 2-3 swallows he aspirated (silently). We moved up to the honey consistency (even thicker) and at this consistency he started aspirating but caught it himself and cleared it. They were comfortable to say that at a honey thickness he does not aspirate and that it is safe to feed orally at that thickness.
A few days later we did the upper GI study which showed a small amount of reflux, and it appeared he didn't aspirate the reflux.
At this point, we were told to only give him formula which we needed to thicken with some gel product called 'Simply Thick'.
Below are the highlighted points of the sleeping study:
- He has obstructive airway apnea. When not in REM sleep, he has it 28 times an hour, during REM he jumped up to 46 times an hour.
- He takes him 120-160 mins to reach REM sleep, normal is 20-40 mins
- He is only getting approx 1-3 hours of REM sleep each day, normal is 12-15 hours.
The swallow study was to see if he was aspirating his food, and if so, to what extent. When they were readying for the swallow study they warned us that they don't always capture an aspirating event. Unfortunately, after the 3rd swallow he aspirated his food. What he did they call a 'silent aspiration' which means he did not show any sign of aspirating (no coughing, no flaring nose, no gagging, etc). At this point, that stopped giving him the regular liquid and they tested a nectar consistency (basically just thickening it up). Again after 2-3 swallows he aspirated (silently). We moved up to the honey consistency (even thicker) and at this consistency he started aspirating but caught it himself and cleared it. They were comfortable to say that at a honey thickness he does not aspirate and that it is safe to feed orally at that thickness.
A few days later we did the upper GI study which showed a small amount of reflux, and it appeared he didn't aspirate the reflux.
At this point, we were told to only give him formula which we needed to thicken with some gel product called 'Simply Thick'.
January, February and March
It has been many many months since the last post, I've realized putting his story into words has been very hard but brings me out of my denial state. Before I begin to go into what Garak is going through now, I'm going to backtrack to December the time of the last post.
In December, the seizure seemed to be under control and life seemed to calm down. We had an amazing Christmas, almost as if the past few months were just a nightmare. Life was very good and everyone was doing really well. Toward the end of December and into January we started noticing Garak having what seemed to be Moro Reflex. Moro reflex is a response to the loss of support and feels to an infant as if they were falling. Most commonly, infant arms flying out to the side and legs usually go stiff. We did not think much into this since all babies do this, but then we started noticing Garak doing them ALL the time in clusters.
At Garak's neurology follow up which occurred on January 19th everything was normal and calm until I mentioned that Garak was doing this 'moro reflex' a lot. Suddenly everything changed from calm and normal to an urgent need to set him up with an EEG to look at what was going on. We were told they were worried that Garak wasn't having moro reflex but he was having Infantile Spasms. Infantile Spasm (IS) is the specific type of seizure in infants that have West Syndrome. Infantile spasm is also known as hypsarrhythmia, which is basically chaotic brain waves. We were told that IS is worse for Garak than the seizures since when Garak is having seizures, his brain neurons are not working only during the seizure. With IS the neurons are never working properly. This news was hard to comprehend since we thought things were improving, but now we know the seizures were just suppressed because of the IS. They immediately started him on Prednisolone which is an oral steroid to cure the IS. They were hoping he would only be on the steroid for 2-3 weeks before the IS was gone. Unfortunately, Garak was on this steriod for almost 8 weeks. Throughout the course of the 8 weeks they had to increase the dosage twice since the smaller dosages were not helping the IS. The last 3 weeks he was on a higher dosage then most adults are ever put on. After 8 weeks, the motion of his arms and legs decreased almost fully so they did another EEG the second week of March and determined that he no longer had IS.
During the time he was on the Prednisolone, Garak was EXTREMELY fussy and miserable, this is one of the side effects to the steroid. He also slept even less than he did previously which I did not think was possible. Insomnia is another side effect of the steroid. The one good side effect of the steroid is that it normally makes people gain weight. Garak has been extremely under weight and in January he was in the 7th percentile. We were hoping that the steroid would help him eat more and put more weight on, but unfortunately, that did not happen.
In December, the seizure seemed to be under control and life seemed to calm down. We had an amazing Christmas, almost as if the past few months were just a nightmare. Life was very good and everyone was doing really well. Toward the end of December and into January we started noticing Garak having what seemed to be Moro Reflex. Moro reflex is a response to the loss of support and feels to an infant as if they were falling. Most commonly, infant arms flying out to the side and legs usually go stiff. We did not think much into this since all babies do this, but then we started noticing Garak doing them ALL the time in clusters.
At Garak's neurology follow up which occurred on January 19th everything was normal and calm until I mentioned that Garak was doing this 'moro reflex' a lot. Suddenly everything changed from calm and normal to an urgent need to set him up with an EEG to look at what was going on. We were told they were worried that Garak wasn't having moro reflex but he was having Infantile Spasms. Infantile Spasm (IS) is the specific type of seizure in infants that have West Syndrome. Infantile spasm is also known as hypsarrhythmia, which is basically chaotic brain waves. We were told that IS is worse for Garak than the seizures since when Garak is having seizures, his brain neurons are not working only during the seizure. With IS the neurons are never working properly. This news was hard to comprehend since we thought things were improving, but now we know the seizures were just suppressed because of the IS. They immediately started him on Prednisolone which is an oral steroid to cure the IS. They were hoping he would only be on the steroid for 2-3 weeks before the IS was gone. Unfortunately, Garak was on this steriod for almost 8 weeks. Throughout the course of the 8 weeks they had to increase the dosage twice since the smaller dosages were not helping the IS. The last 3 weeks he was on a higher dosage then most adults are ever put on. After 8 weeks, the motion of his arms and legs decreased almost fully so they did another EEG the second week of March and determined that he no longer had IS.
During the time he was on the Prednisolone, Garak was EXTREMELY fussy and miserable, this is one of the side effects to the steroid. He also slept even less than he did previously which I did not think was possible. Insomnia is another side effect of the steroid. The one good side effect of the steroid is that it normally makes people gain weight. Garak has been extremely under weight and in January he was in the 7th percentile. We were hoping that the steroid would help him eat more and put more weight on, but unfortunately, that did not happen.
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