What a wonderful Thanksgiving! Ammon has been home with us for a week now, and based on his performance we expect this stay to continue. It has been a busy, joyful, tiring week, full of gratitude and work. Minus the IVs, we’ve set up shop pretty nicely here for Ammon, with all the familiar beeps and hums of various machines from his hospital rooms. We have a nebulizer for his Dinase treatments, constant oxygen during the day and a bipap machine at night, oxygen saturation and heart rate monitor, a continuous portable feeding tube, and the suction machine. We’ve had a lot of experience with most of these machines before in Ammon’s life so sometimes the biggest worry is just keeping the cords and tubes untangled and everything flowing smoothly. However, we’ve learned quite a bit regarding the continuous feeding pump and the suction machine, and only had a few head scratching moments on why food or medicine wasn’t moving as it should. Ammon’s machines are supported by several boxes of equipment and supplies, and of course his daily doses of medications. Summer set up a chart with nearly a dozen listings, showing what type of medicine needs to be administered, the quantity, and when, all through his tube. The chart shows medication being administered at various times throughout the day, including the dreaded 2 a.m. night shift. Though caring for Ammon is more than a full time endeavor, for more than one adult, it is so good to have him at home.
It’s important to daily look for, recognize, and then count your blessings, particularly when in the midst of life threatening trials. This is why Thanksgiving is such a great time of year. Over the past while I’ve been putting together a reminder list of things, people, and events that I am thankful for. In keeping with Summer’s loving advice to me, I’ll do my best to keep this posting to under a 3 or 4 minute read, so this is only a summary of my many ‘thankfuls’ (and hopefully you can read fast).
I’m thankful for the faith and knowledge of children. One day after church, 3-year old Brynn took my hand and said in a matter of fact voice, “Daddy, Ammon walk…” She then continued saying to a suddenly emotional and attentive Dad, “I hold his hand…but he walk, and he won’t fall.” Then, in some of her prayers since then she prays about Ammon walking. I don’t know if she heard something at church or if it was just a thought of her own, but either way Brynn knows that someday “Ammon walk, and he won’t fall.”
I’m thankful for forgiveness and understanding. One of the good things about being at the hospital is that all the doctors and nurses do the necessary, yet sometimes painful or discomforting medical procedures. They poke Ammon with the needles, they push on his sore tummy, they administer his poisonous chemo, and they suction out his nose and throat. In most instances we are standing with Ammon and holding his hand or rubbing his arm and telling him to hold on and it will pass quickly. Ammon always believes us, and the pain of the procedures always does pass eventually. At the hospital we are almost always the good guys. Now that we are home, the most painful and discomforting procedure that Ammon has to endure is the suctioning. Suctioning involves putting a small tube down Ammon’s throat or nose, sometimes as far as 10 or 12 inches, with the goal in mind to get him to cough and suction up all the junk and secretions. Usually, Summer or I will hold Ammon’s head while the other inserts the tube, and this is usually repeated 2 to 4 times per session. The first few times, Ammon would stare straight at me while crying and I could just see his eyes telling me, “Not you too Dad!” But I’ve seen over the past few days that he understands how this is helping, and how much his parents still love him. Ammon, again, has shown his wisdom and strength in successfully enduring the suctions and still loving his Mommy and Daddy just as much afterwards.
I’m thankful for laughter. It’s been so nice to hear a good joke or story over the past two months and just laugh uncontrollably. Coleson’s enthusiasm for life has been a particular source of joy and good smiles. Sometimes, Coleson has been down stairs watching a movie and we just hear random outbursts of pure laughter followed by something like, “That’s just great…Oh, that’s awesome!” You haven’t lived until you’ve had the chance to watch a funny movie with Coleson or play the Wii where he will jump up and down saying "Go, Go, Go!" Even just the chance to take a break and be with friends and neighbors for a few hours and play video games (something I’m able to do once every year or two) that I have absolutely no skill at, yet I’m able to elicit quite the smack talk. Honestly, not even the smack talk is that good, which is why it makes me laugh.
I’m thankful for family. That’s probably better said as I’m thankful that family is forever. My brother-in-law’s family has been at our home for the last week, and it has been a blessing having them here. They drove all the way down from Seattle with a very young family, with the primary goal in mind of serving Ammon. They represented another shift of the continuous round of love and charity that has surrounded Ammon and our family since his diagnosis. It has been relieving to have things be done, particularly those things that I didn’t even realize needed to be done. A fridge cleaned out, a cupboard organized, a meal prepared, outdoor Christmas lights put up, and the children sung to and tucked into bed. My parents have been wonderful in attending Coleson’s soccer games, bringing small presents for Brynn, and praying without ceasing on Ammon’s behalf. My brothers and their families have been equally generous in their outpouring of love, and their faith and prayers have been recognized on Ammon’s behalf. My other brother-in-law and his wife put on a much needed Thanksgiving feast that was as exquisite as any I can remember (the turkey was heaven, and the sweet potatoes somehow even better; seconds was still only the beginning). Laughing and sharing around the dinner table, with the best part being that Ammon was there with us sitting mostly content on Summer’s lap. It’s amazing how broad those you call family grows when going through something like this with Ammon. All of this love, faith, and charity for my young wonderful boy. It’s no wonder, that at least for me, I look forward to having such family around us forever.
Saturday, November 26, 2011
Friday, November 18, 2011
Excitement and joy do not even describe it!
This week has flown by! The lack of posts has been due to nothing new and not a lot of sitting around. Ammon is healing and getting back to semi-normal, which meant more interaction and entertaining this week. He did get another hematocrit transfusion and the benadryl did not interact well. He was inconsolable for a little while. He has had night sweats and diaper redness, but all minor comparatively. He is getting chemo right now in the OR. It is a lumbar puncture which is done under sedation, but only takes about 10 minutes. After he is observed for a few hours then we should be on our way home!! I told the cleaning lady this morning she could wait until we left. I ran into a few PICU doctors and nurses yesterday and today and told them the good news. I keep spreading my gratitude around hoping that will ensure us going home....The doctor just cleared us to go home! We can't thank everyone enough for their prayers, thoughts, services, notes, child care, etc. to get us through. Hopefully we won't have another complication like this, seeing this is just the second month of our leukemia journey, but everyone has helped us and blessed us to survive! There are so many days and nights where I wish I could rock, sing and love Ammon's problems away and this time I think the overwhelming love and faith (with a lot of hospital care) worked!
Thoughts on Chemo...
I’ve been thinking about chemo lately. Chemo isn’t exactly what I thought it was before Ammon was diagnosed. In many regards, chemo refers to multiple treatments over varying time periods that are all designed to adequately arm Ammon in his cancer battle. Some of the chemo treatments fight a single solitary purpose in the cancer battle and are used just once, while others are administered repeatedly, even daily, and work together on the same strategic objective. Some are the tip of the attack, the probing and softening of the defenses, and some are simply manning the watch towers on areas that have already been won. Certain chemos are administered through Ammon’s port, others through his GJ tube, and others, like the lumbar poke, require sedation and insertion right into his back.
Chemo is a life saving poison. If this were a fairy tale, chemo would be the poison apple that causes you to fall into a forever sleep, but without said poison apple you would never meet your dream come true through an eternal kiss. The pain of the poison apple is what makes the happily ever after even a possibility. For example, a few days after Ammon’s diagnosis, he received a chemo treatment referred to as the PEG (in hindsight, an exceptionally bitter apple). The PEG is received only once in the overall chemo roadmap, but only once is all it took. The lifesaving aspects of the PEG also resulted in an emergency life flight, pancreatitis, and a sickening downward spiral of severe medical complications that necessitated over a month stay in the PICU followed by a week in the ICS. The PEG was a devastating poison for Ammon, and a lethal poison for Ammon’s cancer.
Sometimes, because I can’t see the chemo, I almost close my eyes and pretend it’s not there. I’ve been known to chuckle when Ammon needs a diaper change, particularly in the days after his chemo treatments, because I jokingly say his diaper is radioactive, or at least the contents therein (I know several Dads that would love to slide into a chemical protection suit before every diaper change). I usually do this because sometimes we all just need something to chuckle about; at times we just need a little bit of the best medicine, a laugh and a smile. But even as the nurses and I chuckle at the thought of another radioactive diaper, the nurses are pulling on gloves and putting on robes. Not just standard gloves to ensure the nurses don’t come in contact with germs that you can simply wash away, or vice versa in spreading harmful germs to Ammon. No, these gloves are the thick purple gloves that are designed to protect you from the poisonous aspects of the cure. The robes have the same protective characteristics. And pretty much anytime, any of the professionals working with Ammon need to be exposed to him for extended periods after his chemo treatments, whether through brushing his teeth, changing a diaper, or another caring procedure, they always dawn the thick purple gloves and the special robes. And when they are done they throw the protective materials in a container marked with a hazardous sign on it. Like I said, because I can’t see the chemo I almost pretend that it’s not there, and sometimes in what is probably a foolish showing of solidarity with Ammon, I’ll do the nurse a favor and grab the diaper and put it on the scale without wearing the special gloves. “See no gloves,” I think to myself, “Surely you are being overly cautious; surely, it is not that dangerous. Man up, and let’s just change a diaper!” But I’ve come to know these professionals, I know they love Ammon, and I know they are not foolish. I know they respect the power, the seriousness, and the residual effects of the cure.
I need to wear the gloves too, because to do otherwise is simply pretending that the poisonous cure I can’t see is not as difficult to endure as it really is. In some ways, this act of not putting on the gloves is selfishly minimizing the treatments that Ammon is required to endure. And I’ve realized that Ammon doesn’t need that kind of attitude from me, when what he really needs is my continuing faith, love, and prayers. Because over the last month in the PICU, I’ve witnessed how hot the burning fire of this cure might feel before it really becomes the cure. I also know that this chemo process, combined with faith, love, and prayers, will continue to shorten the path to reaching our happily ever after.
Chemo is a life saving poison. If this were a fairy tale, chemo would be the poison apple that causes you to fall into a forever sleep, but without said poison apple you would never meet your dream come true through an eternal kiss. The pain of the poison apple is what makes the happily ever after even a possibility. For example, a few days after Ammon’s diagnosis, he received a chemo treatment referred to as the PEG (in hindsight, an exceptionally bitter apple). The PEG is received only once in the overall chemo roadmap, but only once is all it took. The lifesaving aspects of the PEG also resulted in an emergency life flight, pancreatitis, and a sickening downward spiral of severe medical complications that necessitated over a month stay in the PICU followed by a week in the ICS. The PEG was a devastating poison for Ammon, and a lethal poison for Ammon’s cancer.
Sometimes, because I can’t see the chemo, I almost close my eyes and pretend it’s not there. I’ve been known to chuckle when Ammon needs a diaper change, particularly in the days after his chemo treatments, because I jokingly say his diaper is radioactive, or at least the contents therein (I know several Dads that would love to slide into a chemical protection suit before every diaper change). I usually do this because sometimes we all just need something to chuckle about; at times we just need a little bit of the best medicine, a laugh and a smile. But even as the nurses and I chuckle at the thought of another radioactive diaper, the nurses are pulling on gloves and putting on robes. Not just standard gloves to ensure the nurses don’t come in contact with germs that you can simply wash away, or vice versa in spreading harmful germs to Ammon. No, these gloves are the thick purple gloves that are designed to protect you from the poisonous aspects of the cure. The robes have the same protective characteristics. And pretty much anytime, any of the professionals working with Ammon need to be exposed to him for extended periods after his chemo treatments, whether through brushing his teeth, changing a diaper, or another caring procedure, they always dawn the thick purple gloves and the special robes. And when they are done they throw the protective materials in a container marked with a hazardous sign on it. Like I said, because I can’t see the chemo I almost pretend that it’s not there, and sometimes in what is probably a foolish showing of solidarity with Ammon, I’ll do the nurse a favor and grab the diaper and put it on the scale without wearing the special gloves. “See no gloves,” I think to myself, “Surely you are being overly cautious; surely, it is not that dangerous. Man up, and let’s just change a diaper!” But I’ve come to know these professionals, I know they love Ammon, and I know they are not foolish. I know they respect the power, the seriousness, and the residual effects of the cure.
I need to wear the gloves too, because to do otherwise is simply pretending that the poisonous cure I can’t see is not as difficult to endure as it really is. In some ways, this act of not putting on the gloves is selfishly minimizing the treatments that Ammon is required to endure. And I’ve realized that Ammon doesn’t need that kind of attitude from me, when what he really needs is my continuing faith, love, and prayers. Because over the last month in the PICU, I’ve witnessed how hot the burning fire of this cure might feel before it really becomes the cure. I also know that this chemo process, combined with faith, love, and prayers, will continue to shorten the path to reaching our happily ever after.
Sunday, November 13, 2011
Moving day
Today we finally graduated from the PICU! Hooray, we are no longer in critical condition and one step closer to going home. We are now in ICS, the cancer treatment unit (affectionately referred to as "upstairs on the 4th floor"). We have our own room again and a lot less pokes and prods. Actually after we moved mid day Sunday, we really haven't been bothered except for respiratory treatments. One day as I was walking through the hospital, all sweaty from doing a morning run, on the way to the parent showers, I realized that I live here. I eat, sleep, exercise, shower, and work (to get Ammon better) here. I do feel like I am leaving all my new friends in the PICU. All the nurses and doctors have been great. One of our favorite nurses got to move upstairs with us and continue to take care of Ammon the rest of the day. We both felt like we were out of our comfort zone here in the ICS. Ammon and I stared at each other a lot. He really didn't feel like doing anything. The rest of the family came to visit us, as this is the last day that kids are allowed in to visit due to hospital restrictions. From here on out, Coleson and Brynn can only be with or say hi to Ammon over Skype whenever he is in the hospital. Brian apparently got Ammon to laugh while I was walking around with the kids. So not fair.
So far so good with his last regime of chemo from Friday. With the recent chemo treatment the plan is to watch him for a few more days and then hopefully figure out a plan to go home. He is still on the bipap at night, continuous feeds and a whole lot of medications, all of which we could possibly do at home. It's been a good day!
So far so good with his last regime of chemo from Friday. With the recent chemo treatment the plan is to watch him for a few more days and then hopefully figure out a plan to go home. He is still on the bipap at night, continuous feeds and a whole lot of medications, all of which we could possibly do at home. It's been a good day!
Friday, November 11, 2011
Moving Forward...
Over the past few days Ammon has continued to improve, which is wonderful. It is so great to walk into his hospital room and only see a continuous feed bag and water, no ivs, no medicine drips, just meds and flushes in the morning and night. Ammon has been having good days and then sleeping fairly well at night. His blood counts jumped back up last night, which means he has officially been cleared for his next round of chemo today. You’ve heard my thoughts too many times on this already, but this is just how it is. At the moment you are doing better, particularly after having been so critically ill, your reward is another round of life saving chemo. You keep being brave like Ammon and moving forward, because it is the only way to go. We are optimistic that Ammon will weather this round better, although we do expect to remain in the hospital indefinitely. In fact, Wednesday Ammon marked his fourth week in the PICU, and he’s made a lot of friends and received countless blessings along the way.
Below are some older pictures of Ammon smiling. This is what we are all looking forward to again.
Below are some older pictures of Ammon smiling. This is what we are all looking forward to again.
Thursday, November 10, 2011
Write Them Down...
I’ve been reminded repeatedly over the past month and a half of a talk I heard in conference several years ago. President Eyring shared the story of a time in his life when he was a very busy young father, and was arriving home late one night in the dark. As he was walking toward his front door, his father-in-law unintentionally surprised him. His father-in-law was walking very fast toward the backyard, dressed in work clothes, and carrying a load a pipes. He was building a system to pump water from a stream to President Eyring’s property. His father-in-law smiled, spoke softly, and then rushed past him into the darkness to continue with the work. He was performing an exceptional selfless service for the Eyring family, even late into the nighttime hours. As President Eyring was entering his home and thinking upon this service he heard in his mind (not in his own voice) these words, “I’m not giving you these experiences for yourself. Write them down.”
I’ve heard that same voice and that same phrase for years, and particularly since Ammon started this most recent journey. I feel selfish in many regards for not doing a better job of writing and then appropriately sharing many of these experiences. I’ve been particularly moved as many times recently I’ve come home from work or the hospital, and it is dark, and the children have already been hugged and tucked into bed, and my own father-in-law is sitting quietly on the couch doing some work. On many days when he is here, it means that his beautiful wife is back in California, and they are apart while serving our family. I’ve been surprised many times to come home and find everything already done. The laundry room painted, the freezer moved, and a dozen other items that I was supposed to get done months ago that are finally being completed. All of these experiences inspired by Ammon are truly not for myself, but I’m trying to do what has been asked of me and writing them down.
Here’s a few of the dozens of stories that I’ve written down. I do hesitate to share them in this way, because it feels like standing up at a party and acknowledging only a few where literally everyone in attendance deserves significant acknowledgment and praise for the service and prayers that have been performed. Every service and prayer is special, and a child's 15-second prayer is of equal merit and importance as the gathering of a dozen youth to clean our yard and mow our lawn. I do know, that in the eternities all the good will be known, and when compared to the things that we have written down the volumes of records will likely increase a hundred fold.
There have been numerous families that have been a significant comfort and source of faith since Ammon’s diagnosis, and in some instances several of these families have historically only been general acquaintances, kind of like those that you only wave hi to with a brief hello in a hallway. On one occasion, I was deeply touched and almost brought to tears when one extremely shy individual approached me. She called me by name (I didn’t even know she really knew who I was), and then proceeded to offer exemplary support and service to our family on Ammon’s behalf. As people learn about Ammon’s strength and experiences, he apparently makes it easier for people to overcome their own fears and weaknesses, and truly step outside of their comfort zones. On other occasions, right from the time of Ammon's diagnosis, so many good people have watched and loved Coleson and Brynn. On the nights surrounding Ammon's diagnosis this was particularly poignant for me to such a degree that I have struggled to write the right words in expressing the gratitude I felt. I struggled greatly on how to relay Ammon's diagnosis to Coleson and Brynn for the first time. As I went to pick them up on those nights I received great comfort in knowing they were in homes and with families that loved them. That alone, made an incredibly difficult task of telling them that their brother has cancer and what that means a little easier for a father to shoulder. I continue to be amazed daily as I witness so many tender mercies from the Lord.
Ammon’s nurses and doctors love him, and we are grateful they have those feelings. At times, we have found his nurses, both male and female, sitting next to Ammon and singing him songs or holding his hand. Ammon has an occupational therapist that comes to visit him daily now that his health has been improving, and they play specialized exercise and interaction games together. Today, near the end of Ammon’s therapy session the therapist was singing Paddy Cake and doing the motions and Ammon started to smile, and just melted the therapist’s heart.
The youth and children in our neighborhood, in our extended families, and from work have been especially thoughtful and prayerful on Ammon’s behalf. To hear their testimonies and eternal experiences concerning Ammon’s journey has been particularly touching and inspiring. The drawings, pictures, letters, and cards have been a repeated heart warming source of strength to us and to Ammon. Several very sweet young girls were apparently distraught over Ammon's diagnosis, and taking matter's into their own hands they canvassed the neighborhood sharing Ammon's story and securing donations on his behalf. Our family has been humbled immensely by the kindness of the act and the amount of funds our good neighbors donated. Another group of families ensured that fuel for our cars as we travel to be with Ammon would not be a concern. It’s so humbling and strengthening to hear parents share stories of their littlest children, who sometimes can hardly even talk, praying on Ammon’s behalf, with no encouragement or reminders needed. I hope you all treasure those special moments, by so many special children, as much as we do.
One day a close friend dropped by our house several grocery bags. When Summer first explained to me the delivery I naturally thought they were full of groceries, but instead it was full of paper plates, plastic cups, and picnic utensils. Apparently, while our friend was grocery shopping that day, she was thinking of Ammon and thought there would be less chores do if we could simply throw away our dishes after dinner instead of washing them.
A package arrived one day with a couple of CDs full of the sounds of soothing harps and other relaxing music. The gift of music was from a grandmother that had lost her own grandchild several years ago when the grandchild was less than a few months old. A note was attached that shared how much she loved and was inspired by Ammon, and that the music on the CDs were used to calm and comfort her own grandchild when she was experiencing her own difficult and inspiring journey here on Earth. We feel so much joy and humility in receiving such a tender gift, and are glad to share it with Ammon, while knowing that a loved grandchild in Heaven is always remembered and connected with Ammon in this special way.
The week after Ammon was diagnosed, two of Summer’s friends from the neighborhood stopped by our house and asked to borrow the keys to the Explorer. They relayed some story of needing a larger vehicle for some event and simply wanted to borrow the car for a few hours (despite one of these women having teenagers, they were not the best at creating a tall tale or even a remotely believable excuse). With a questioning smile from Summer that conveyed “what is really going on,” she handed over the keys. Several hours later the Explorer was returned, with the task accomplished. Upon investigating the vehicle we were greeted with an immaculate showroom interior. Everything had been vacuumed, all items picked up and put away, the windows cleaned, the dash scrubbed, and a basket full of travel goods, a journal, food items, and other necessities that have since been enjoyed on every car trip. They had even taken the thought to place a vanilla air freshner at the front of the vehicle and another way in the back. The car was perfect, the service was exceptional, and the love conveyed was immeasurable. Even a month later, each time as we open the doors to load the children in the car or for another solo trip to be with Ammon at the hospital, the warm vanilla smells envelope us. The Explorer, has maintained its illustrious shine when it has been in Summer's responsibility, but for the days that I've had it the shine has occasionally been diminished. At times, if you did not know the service that had been performed and had the chance to open the car doors, you might be greeted by a few messy treasures left behind by two young children (any maybe one particular adult). But let me explain how this kind act of service continues to burn strong. Without fail, each time I’ve gotten in that car, despite any current physical appearance, the sweet smells of vanilla have greeted me, and like an emotional reaction the divine service of these good people wraps around me and I can hear again the words in the service performed, “We love you Ammon, we pray for you Ammon, you inspired us Ammon…”
Shortly after Ammon was diagnosed, Summer was at the hospital with Ammon and I was at home cleaning and keeping the house in marginal order before heading there as well. A knock came at the door and I was greeted by one of our neighbors. She had learned from Summer the day before about Ammon’s diagnosis and had been broken hearted ever since. With emotion in her voice she simply said, “I’m not sure exactly how to say this, but I need your laundry.” In her hands she was holding two empty laundry baskets. I was touched immediately by her thoughtful service on Ammon’s behalf, and I’ll never forget her words and the inspired charity it conveyed. Unfortunately, I had just finished the last load of laundry, except for a load of whites that included all of our unmentionables and I wasn’t ready to hand those over (although, since that day our ‘unmentionables’ have been folded and put away through another kind act of service). After talking for a while, our friend left empty handed, or at least with empty laundry baskets. But she needs to know that the inspiration behind the mission was accomplished, and it really had nothing to do with laundry. No, that day, even that specific hour, the real inspired service was to let a Dad know that his son was loved and being prayed for, that heavenly and earthly forces of good were marshaling on Ammon’s behalf and there were yet many miracles to come. Who would have ever thought that the phrase “I need your laundry” would convey such a divinely comforting message.
Thank you again to everyone! Our hearts have been overflowing with the charity and love that we and Ammon have witnessed.
I’ve heard that same voice and that same phrase for years, and particularly since Ammon started this most recent journey. I feel selfish in many regards for not doing a better job of writing and then appropriately sharing many of these experiences. I’ve been particularly moved as many times recently I’ve come home from work or the hospital, and it is dark, and the children have already been hugged and tucked into bed, and my own father-in-law is sitting quietly on the couch doing some work. On many days when he is here, it means that his beautiful wife is back in California, and they are apart while serving our family. I’ve been surprised many times to come home and find everything already done. The laundry room painted, the freezer moved, and a dozen other items that I was supposed to get done months ago that are finally being completed. All of these experiences inspired by Ammon are truly not for myself, but I’m trying to do what has been asked of me and writing them down.
Here’s a few of the dozens of stories that I’ve written down. I do hesitate to share them in this way, because it feels like standing up at a party and acknowledging only a few where literally everyone in attendance deserves significant acknowledgment and praise for the service and prayers that have been performed. Every service and prayer is special, and a child's 15-second prayer is of equal merit and importance as the gathering of a dozen youth to clean our yard and mow our lawn. I do know, that in the eternities all the good will be known, and when compared to the things that we have written down the volumes of records will likely increase a hundred fold.
There have been numerous families that have been a significant comfort and source of faith since Ammon’s diagnosis, and in some instances several of these families have historically only been general acquaintances, kind of like those that you only wave hi to with a brief hello in a hallway. On one occasion, I was deeply touched and almost brought to tears when one extremely shy individual approached me. She called me by name (I didn’t even know she really knew who I was), and then proceeded to offer exemplary support and service to our family on Ammon’s behalf. As people learn about Ammon’s strength and experiences, he apparently makes it easier for people to overcome their own fears and weaknesses, and truly step outside of their comfort zones. On other occasions, right from the time of Ammon's diagnosis, so many good people have watched and loved Coleson and Brynn. On the nights surrounding Ammon's diagnosis this was particularly poignant for me to such a degree that I have struggled to write the right words in expressing the gratitude I felt. I struggled greatly on how to relay Ammon's diagnosis to Coleson and Brynn for the first time. As I went to pick them up on those nights I received great comfort in knowing they were in homes and with families that loved them. That alone, made an incredibly difficult task of telling them that their brother has cancer and what that means a little easier for a father to shoulder. I continue to be amazed daily as I witness so many tender mercies from the Lord.
Ammon’s nurses and doctors love him, and we are grateful they have those feelings. At times, we have found his nurses, both male and female, sitting next to Ammon and singing him songs or holding his hand. Ammon has an occupational therapist that comes to visit him daily now that his health has been improving, and they play specialized exercise and interaction games together. Today, near the end of Ammon’s therapy session the therapist was singing Paddy Cake and doing the motions and Ammon started to smile, and just melted the therapist’s heart.
The youth and children in our neighborhood, in our extended families, and from work have been especially thoughtful and prayerful on Ammon’s behalf. To hear their testimonies and eternal experiences concerning Ammon’s journey has been particularly touching and inspiring. The drawings, pictures, letters, and cards have been a repeated heart warming source of strength to us and to Ammon. Several very sweet young girls were apparently distraught over Ammon's diagnosis, and taking matter's into their own hands they canvassed the neighborhood sharing Ammon's story and securing donations on his behalf. Our family has been humbled immensely by the kindness of the act and the amount of funds our good neighbors donated. Another group of families ensured that fuel for our cars as we travel to be with Ammon would not be a concern. It’s so humbling and strengthening to hear parents share stories of their littlest children, who sometimes can hardly even talk, praying on Ammon’s behalf, with no encouragement or reminders needed. I hope you all treasure those special moments, by so many special children, as much as we do.
One day a close friend dropped by our house several grocery bags. When Summer first explained to me the delivery I naturally thought they were full of groceries, but instead it was full of paper plates, plastic cups, and picnic utensils. Apparently, while our friend was grocery shopping that day, she was thinking of Ammon and thought there would be less chores do if we could simply throw away our dishes after dinner instead of washing them.
A package arrived one day with a couple of CDs full of the sounds of soothing harps and other relaxing music. The gift of music was from a grandmother that had lost her own grandchild several years ago when the grandchild was less than a few months old. A note was attached that shared how much she loved and was inspired by Ammon, and that the music on the CDs were used to calm and comfort her own grandchild when she was experiencing her own difficult and inspiring journey here on Earth. We feel so much joy and humility in receiving such a tender gift, and are glad to share it with Ammon, while knowing that a loved grandchild in Heaven is always remembered and connected with Ammon in this special way.
The week after Ammon was diagnosed, two of Summer’s friends from the neighborhood stopped by our house and asked to borrow the keys to the Explorer. They relayed some story of needing a larger vehicle for some event and simply wanted to borrow the car for a few hours (despite one of these women having teenagers, they were not the best at creating a tall tale or even a remotely believable excuse). With a questioning smile from Summer that conveyed “what is really going on,” she handed over the keys. Several hours later the Explorer was returned, with the task accomplished. Upon investigating the vehicle we were greeted with an immaculate showroom interior. Everything had been vacuumed, all items picked up and put away, the windows cleaned, the dash scrubbed, and a basket full of travel goods, a journal, food items, and other necessities that have since been enjoyed on every car trip. They had even taken the thought to place a vanilla air freshner at the front of the vehicle and another way in the back. The car was perfect, the service was exceptional, and the love conveyed was immeasurable. Even a month later, each time as we open the doors to load the children in the car or for another solo trip to be with Ammon at the hospital, the warm vanilla smells envelope us. The Explorer, has maintained its illustrious shine when it has been in Summer's responsibility, but for the days that I've had it the shine has occasionally been diminished. At times, if you did not know the service that had been performed and had the chance to open the car doors, you might be greeted by a few messy treasures left behind by two young children (any maybe one particular adult). But let me explain how this kind act of service continues to burn strong. Without fail, each time I’ve gotten in that car, despite any current physical appearance, the sweet smells of vanilla have greeted me, and like an emotional reaction the divine service of these good people wraps around me and I can hear again the words in the service performed, “We love you Ammon, we pray for you Ammon, you inspired us Ammon…”
Shortly after Ammon was diagnosed, Summer was at the hospital with Ammon and I was at home cleaning and keeping the house in marginal order before heading there as well. A knock came at the door and I was greeted by one of our neighbors. She had learned from Summer the day before about Ammon’s diagnosis and had been broken hearted ever since. With emotion in her voice she simply said, “I’m not sure exactly how to say this, but I need your laundry.” In her hands she was holding two empty laundry baskets. I was touched immediately by her thoughtful service on Ammon’s behalf, and I’ll never forget her words and the inspired charity it conveyed. Unfortunately, I had just finished the last load of laundry, except for a load of whites that included all of our unmentionables and I wasn’t ready to hand those over (although, since that day our ‘unmentionables’ have been folded and put away through another kind act of service). After talking for a while, our friend left empty handed, or at least with empty laundry baskets. But she needs to know that the inspiration behind the mission was accomplished, and it really had nothing to do with laundry. No, that day, even that specific hour, the real inspired service was to let a Dad know that his son was loved and being prayed for, that heavenly and earthly forces of good were marshaling on Ammon’s behalf and there were yet many miracles to come. Who would have ever thought that the phrase “I need your laundry” would convey such a divinely comforting message.
Thank you again to everyone! Our hearts have been overflowing with the charity and love that we and Ammon have witnessed.
Tuesday, November 8, 2011
Smile!!!
I decided that in between projects at work I needed to take a quick lunch break with Ammon and Summer at the hospital. I’m glad I made that decision. Upon arriving in Ammon’s room he was in the middle of a respiratory treatment. He heard my voice and looked right at me. At one point while singing him songs, rubbing his arm, and holding his hand, Ammon must have thought I was doing something funny because he started to give us a little smile. This only encouraged us even more, and the silly songs became more jubilant, the hand motions became more excited, and the smiles got bigger and kept coming. Summer snapped the picture below on her phone. This is the first time in about a month and half that we have been blessed with a smile from Ammon. Ammon’s doctors and nurses were just as excited as us to see him smile, and the word was spreading quickly. You know sometimes how you’re not sure exactly what you should be praying for in the morning, like something specific as opposed to something more general. I know tonight and tomorrow morning we are going to be praying for more smiles from Ammon, a whole lot more smiles. Big happy miracle smiles!
Sunday, November 6, 2011
8 hours
Today has been one of the best days for Ammon. He was awake and looking around without crying, whining, or moving uncomfortably around, for about 8 hours. Until today I think the longest he had gone being awake and not crying was one or two hours. I started putting him in his wheelchair last week, a couple times a day to be able to sit him up and help open his lungs. He would wince and cry in pain just from me picking him up. He would move his head around and cry and I would rub his head until he would settle down and fall asleep like he just couldn't handle it. I would count down the minutes until he had been there enough to cough out some junk and then lay him down. That is the extent of our "exercise". Today I held him while we were changing his bedding. I hadn't held him for a while and last time I did I slowly watched his respiratory rate decrease until medical intervention had to take over. The time before he never stopped crying. Today he sat there with me, and just looked at me with those wonderful steel eyes and long eyelashes.
I went to the temple yesterday. I had been frustrated. One morning I came in to see blood all over Ammon's mouth and lips along with dried fluid that had leaked out of his g-tube. Another day I came in to find his respiratory status had changed from the cpap back to extremely high bipap, when he had worked the whole day to ween down. I had asked the in-charge nurse to please give him a nurse that he has already had..we've had many..to take care of him through the night while I went home to get much needed rest..to then find out it didn't happen. I started overlooking all the blessings and neglecting the immense gratitude. The temple filled me with peace and love from our Savior, and reminded me of all the miracles and good that is occurring daily.
Today was a good day. There were many who continue to fast with us. Our family was together at the hospital to talk to Ammon. He's getting better. They have to push back his chemo treatments again because of his blood count status, but the good is out weighing the bad, and that's all we can ask for right now. His coloring is better..not pale as a ghost, or red from a reaction, just nice and peachy. The things we added today were ear drops, his ear was draining and probably has an ear infection, and normal formula again. It's like starting the whole week over again, except this time I am going to be grateful and Ammon is a little more stronger and rested.
I went to the temple yesterday. I had been frustrated. One morning I came in to see blood all over Ammon's mouth and lips along with dried fluid that had leaked out of his g-tube. Another day I came in to find his respiratory status had changed from the cpap back to extremely high bipap, when he had worked the whole day to ween down. I had asked the in-charge nurse to please give him a nurse that he has already had..we've had many..to take care of him through the night while I went home to get much needed rest..to then find out it didn't happen. I started overlooking all the blessings and neglecting the immense gratitude. The temple filled me with peace and love from our Savior, and reminded me of all the miracles and good that is occurring daily.
Today was a good day. There were many who continue to fast with us. Our family was together at the hospital to talk to Ammon. He's getting better. They have to push back his chemo treatments again because of his blood count status, but the good is out weighing the bad, and that's all we can ask for right now. His coloring is better..not pale as a ghost, or red from a reaction, just nice and peachy. The things we added today were ear drops, his ear was draining and probably has an ear infection, and normal formula again. It's like starting the whole week over again, except this time I am going to be grateful and Ammon is a little more stronger and rested.
Friday, November 4, 2011
Cookies and Ammon...
Summer's description of a roller coaster couldn't be more accurate. Ammon has been doing well today, but it seems to come with its costs. Ammon appeared to have an okay night last night, but he also had alot of blood around his mouth and potentially in his throat and stomach on Friday morning. The bleeding is primarily caused by the respiratory treatments that he is required to endure, without which his breathing would become worse. However, throughout the day on Friday everyone ensured that the tubes were all extra lubricated and large amounts of saline were used whenever the suction tubes were inserted. He didn't appear to bleed again significantly throughout the day and actually had a good day. His lung xrays show that the secretions and liquids are starting to reduce again, which is great news. Beyond the chemo treatments, it seems like the largest item to deal with currently is the respiratory issues, so this progress appears good and we just need to help Ammon stay on top of it. The cpap machine appears to being its job well, and Ammon is tolerating the mask much better than he has in the past.
On the flip side, Ammon was moved back into isolation this evening due to very low counts again. This is just how fighting cancer goes. In some regards it doesn't necessarily seem like a complete setback. In isolation Ammon receives a little more attention. Specifically, even though he is improving in other areas to such a point that occassionaly his 24 hour nurses were sometimes assigned to two patients over the past couple days, when he is in isolation they are only assigned to him because they can't be moving from a "sick" room to an isolation room repeatedly.
We were talking with one of the oncologists earlier today and she indicated that Ammon's detailed cancer cell analysis from the bone marrow aspirate came back at .004, which is below the .01 the oncologists were willing to accept. This is great news. I asked her if Ammon needed the results to drop to absolute zero in order for the cancer to be beaten, or if even one bad cell would cause a reoccurence. I learned two things from her response. First, even with the detailed lab testwork, if the results came back as absolute zero cancerous cells identified it potentially only reflects an inability in the technologies to detect the cancerous cells perfectly. One, or two, or a few could still be hiding out somewhere, and the technologies and analysis are simply unable to detect it. This is partly why the treatment process is as long and as intensive as it is, even when so few cancer cells are being identified after the induction phase. This gets to the second thing I learned. If there is only one of a few cancer cells left, it depends on the type of cancer cell it is. For lack of a more technical, and probably accurate way to describe it, there are apparently master cancer cells and then all of the offspring they produce. If you kill off all the master cancer cells that's good, because the offspring will die off eventually as well. But even if you successfully kill off all the offspring cancer cells and the majority of the master cancer cells, if there are even just a few master cells remaining they can go into remisssion and wait to fight another day, or another year even. That's why even though you think you've got them all, you still follow the chemo and treatment regimen for three years. I've likely slaughtered the technical way of describing this, and any oncologist reading this is shaking their head, but it made sense to me.
Ammon has had a good Friday evening and has been sleeping well. We are hopeful for rest filled night.
Another fun story. We decided to bring in cookies from a cookie store located at the Gateway. These particular cookies are heaven on earth, melt in your mouth, wonderful. We brought them in on Thursday for all of Ammon's nurses, doctors, and other professionals, and they were a hit. Apparently, in the middle of Friday morning rounds one of the doctors was talking about the delectable cookie she savored from the night before, and the other doctors had to get her refocused on the medical plan for the day. However, once they were done with the medical plan the doctor said, "Now let's get back to that cookie..." Considering the cookie success, the only humane thing to do was to bring in twice as many cookies on Friday and spread the joy. In both instances we wrote a note that essentially thanked the nurses and doctors for everything they are doing and then signed it "Love, Ammon". Whenever someone would look at Summer or I to say thank you for the cookie, we would promptly say, "Oh no, these are from Ammon." At which point, they would enthusiastically thank Ammon and go on and on about how good the cookies were. For some, knowing that the cookies were from Ammon was reason enough to throw calorie conscious caution to the wind and committed diets out the door. I think Ammon has created a new tradition here, that just might need to continue (did I mention I really love these cookies too). Maybe our slogan can be: Changing the PICU, one heavenly cookie at a time!
On the flip side, Ammon was moved back into isolation this evening due to very low counts again. This is just how fighting cancer goes. In some regards it doesn't necessarily seem like a complete setback. In isolation Ammon receives a little more attention. Specifically, even though he is improving in other areas to such a point that occassionaly his 24 hour nurses were sometimes assigned to two patients over the past couple days, when he is in isolation they are only assigned to him because they can't be moving from a "sick" room to an isolation room repeatedly.
We were talking with one of the oncologists earlier today and she indicated that Ammon's detailed cancer cell analysis from the bone marrow aspirate came back at .004, which is below the .01 the oncologists were willing to accept. This is great news. I asked her if Ammon needed the results to drop to absolute zero in order for the cancer to be beaten, or if even one bad cell would cause a reoccurence. I learned two things from her response. First, even with the detailed lab testwork, if the results came back as absolute zero cancerous cells identified it potentially only reflects an inability in the technologies to detect the cancerous cells perfectly. One, or two, or a few could still be hiding out somewhere, and the technologies and analysis are simply unable to detect it. This is partly why the treatment process is as long and as intensive as it is, even when so few cancer cells are being identified after the induction phase. This gets to the second thing I learned. If there is only one of a few cancer cells left, it depends on the type of cancer cell it is. For lack of a more technical, and probably accurate way to describe it, there are apparently master cancer cells and then all of the offspring they produce. If you kill off all the master cancer cells that's good, because the offspring will die off eventually as well. But even if you successfully kill off all the offspring cancer cells and the majority of the master cancer cells, if there are even just a few master cells remaining they can go into remisssion and wait to fight another day, or another year even. That's why even though you think you've got them all, you still follow the chemo and treatment regimen for three years. I've likely slaughtered the technical way of describing this, and any oncologist reading this is shaking their head, but it made sense to me.
Ammon has had a good Friday evening and has been sleeping well. We are hopeful for rest filled night.
Another fun story. We decided to bring in cookies from a cookie store located at the Gateway. These particular cookies are heaven on earth, melt in your mouth, wonderful. We brought them in on Thursday for all of Ammon's nurses, doctors, and other professionals, and they were a hit. Apparently, in the middle of Friday morning rounds one of the doctors was talking about the delectable cookie she savored from the night before, and the other doctors had to get her refocused on the medical plan for the day. However, once they were done with the medical plan the doctor said, "Now let's get back to that cookie..." Considering the cookie success, the only humane thing to do was to bring in twice as many cookies on Friday and spread the joy. In both instances we wrote a note that essentially thanked the nurses and doctors for everything they are doing and then signed it "Love, Ammon". Whenever someone would look at Summer or I to say thank you for the cookie, we would promptly say, "Oh no, these are from Ammon." At which point, they would enthusiastically thank Ammon and go on and on about how good the cookies were. For some, knowing that the cookies were from Ammon was reason enough to throw calorie conscious caution to the wind and committed diets out the door. I think Ammon has created a new tradition here, that just might need to continue (did I mention I really love these cookies too). Maybe our slogan can be: Changing the PICU, one heavenly cookie at a time!
Turning Point...
It’s been a little over a week since I was quarantined from Ammon, and finally tonight, I get to join him for another night back on the frontlines at the PICU. As you can see from the posts below, it’s been a muddy week in the trenches. Ammon’s been bogged down, but he has also been surviving. If Summer hasn’t already done it in the interim, I’ll be sure to post an update sometime tonight on Ammon’s condition for the past day.
I’ve mentioned before that many times sitting next to Ammon’s bed, he has the effect of inspiring and strengthening those around him, even in the midst of a particularly sore fight. As Ammon’s conditions continue to be “tricky,” I have been amazed at the medical miracles that have manifest themselves. Some of these miracles occurred long ago and we are still the recipients of them all these years later, through various medications and procedures. While others are happening right before us. I can see it when the doctors and nurses say “let’s try this…”, and then proceed with the thought (we should show you a picture of one of the contraptions a nurse put together to help relieve abdominal pressure through his G-tube). Sure, part of the time it is just guesswork (Ammon likes to keep us on our toes that way), but other times the “let’s try this…” is a flash of inspiration. That inspiration is a result of your faith and prayers. I hope it’s reassuring for each of you to know that through your prayers you have been part of miracles.
A while ago I had the opportunity to share a little bit about miracles. In thinking about that it reminded me of one of my favorite new shows on TV. It’s called Turning Point, and it’s actually on BYUTV (to my nephews, please don’t be turned off by the BYU part, trust me, you won’t see Cosmo or Jimmer in any of the Turning Point episodes…at least, not yet). The first episode is my favorite so far, and it talks about a technology called Eagle Eyes. The show is inspiring, and if you’re interested please click here and enjoy, or at least make a note of the web address. We actually bumped into two of the children from the show, Elizabeth and Ty, at an event a while ago. It was awesome to meet their parents and to introduce ourselves to Elizabeth and Ty, express our appreciation for them, and then introduce them to Ammon. Following is a part of what I shared a while ago, and it continues to remind me of Ammon and the miracles meant to come about throughout this cancer process:
“Sometimes we are performing miracles without even knowing it. Through persistent work, and a measure of divine inspiration, scientists discover miracle technologies, doctors discover miracle cures. I love the story of Professor Jim Gips. Professor Gips is a computer science professor at Boston College, and one day a thought occurred to him about how cool it would be to control a computer simply by moving your eyes. After inventing the technology it was featured on a Discovery show and a mother with a non-verbal, non-communicative son with severe cerebral palsy saw the show. She pestered Professor Gips and repeatedly asked him to allow her son to try the technology. Professor Gips repeatedly turned her down saying that was not why the technology was invented, it wasn’t even a thought of his that it could be successfully used by such an individual. Eventually, he reluctantly relented and the mother brought her son to try the technology. The instant the son tried Eagle Eyes, as it is called, Professor Gips had one of those moments, he knew that this is what it had been invented for, he knew that this previously non-verbal young man had great intelligence. With this technology, the young man completed high school, made numerous friends, and effectively changed the outlook of his life, his mother’s and an entire community. He that couldn’t talk, could now speak. Now there are dozens of children that previously had no means of connecting with another, that are now expressing the simple fact that there is a child of God inside, that there is an individual with intelligence. Professor Gips, a computer science professor and a self-admitted individual that previously avoided and had no contact with individuals with extreme disabilities, also had a miracle occur in his life. He expressed the following, “My attitude towards the children with the disabilities....my initial attitude was, boy I'm glad that those are not my children, thank God that those are not my children, to those could be my children, to they are my children, to they are me, if that makes sense.” With a gospel perspective, from one child of God to another, it makes perfect sense.”
I’ve mentioned before that many times sitting next to Ammon’s bed, he has the effect of inspiring and strengthening those around him, even in the midst of a particularly sore fight. As Ammon’s conditions continue to be “tricky,” I have been amazed at the medical miracles that have manifest themselves. Some of these miracles occurred long ago and we are still the recipients of them all these years later, through various medications and procedures. While others are happening right before us. I can see it when the doctors and nurses say “let’s try this…”, and then proceed with the thought (we should show you a picture of one of the contraptions a nurse put together to help relieve abdominal pressure through his G-tube). Sure, part of the time it is just guesswork (Ammon likes to keep us on our toes that way), but other times the “let’s try this…” is a flash of inspiration. That inspiration is a result of your faith and prayers. I hope it’s reassuring for each of you to know that through your prayers you have been part of miracles.
A while ago I had the opportunity to share a little bit about miracles. In thinking about that it reminded me of one of my favorite new shows on TV. It’s called Turning Point, and it’s actually on BYUTV (to my nephews, please don’t be turned off by the BYU part, trust me, you won’t see Cosmo or Jimmer in any of the Turning Point episodes…at least, not yet). The first episode is my favorite so far, and it talks about a technology called Eagle Eyes. The show is inspiring, and if you’re interested please click here and enjoy, or at least make a note of the web address. We actually bumped into two of the children from the show, Elizabeth and Ty, at an event a while ago. It was awesome to meet their parents and to introduce ourselves to Elizabeth and Ty, express our appreciation for them, and then introduce them to Ammon. Following is a part of what I shared a while ago, and it continues to remind me of Ammon and the miracles meant to come about throughout this cancer process:
“Sometimes we are performing miracles without even knowing it. Through persistent work, and a measure of divine inspiration, scientists discover miracle technologies, doctors discover miracle cures. I love the story of Professor Jim Gips. Professor Gips is a computer science professor at Boston College, and one day a thought occurred to him about how cool it would be to control a computer simply by moving your eyes. After inventing the technology it was featured on a Discovery show and a mother with a non-verbal, non-communicative son with severe cerebral palsy saw the show. She pestered Professor Gips and repeatedly asked him to allow her son to try the technology. Professor Gips repeatedly turned her down saying that was not why the technology was invented, it wasn’t even a thought of his that it could be successfully used by such an individual. Eventually, he reluctantly relented and the mother brought her son to try the technology. The instant the son tried Eagle Eyes, as it is called, Professor Gips had one of those moments, he knew that this is what it had been invented for, he knew that this previously non-verbal young man had great intelligence. With this technology, the young man completed high school, made numerous friends, and effectively changed the outlook of his life, his mother’s and an entire community. He that couldn’t talk, could now speak. Now there are dozens of children that previously had no means of connecting with another, that are now expressing the simple fact that there is a child of God inside, that there is an individual with intelligence. Professor Gips, a computer science professor and a self-admitted individual that previously avoided and had no contact with individuals with extreme disabilities, also had a miracle occur in his life. He expressed the following, “My attitude towards the children with the disabilities....my initial attitude was, boy I'm glad that those are not my children, thank God that those are not my children, to those could be my children, to they are my children, to they are me, if that makes sense.” With a gospel perspective, from one child of God to another, it makes perfect sense.”
Thursday, November 3, 2011
It's a roller coaster
We are traveling up and down and my favorite, upside down. I really had fun this summer taking Coleson to Lagoon and gaining a new roller coaster buddy, he even went on the Wicked with me. There is something about speed and going upside down that I still love.
Well the only thing that Ammon seems to be maintaining is our tricky status. His respiratory system was going up and down with his lung collapsing and opening. We started giving him DNase to thin out the mucus, which really helped today. He got a lot of junk out. His chest xray looked a lot better today, so we started to turn down his flow rate, but he didn't last long before he needed it turned back up. He was pretty mellow yesterday and last night, catching up on his sleep from the all nighter the night before. I was thinking this is nice, he's out of pain, resting, building up his reserves, but as the day progressed I started thinking he is looking really pale. Then during a CPT(respiratory, suctioning treatment) he wasn't crying and usually he cries towards the end. I mentioned this to the nurse and she checked his temp. Yep, he had a fever. So a phlebotomist came to to do a blood sample. It came back with very low hematocrit, and he needed a blood transfusion. Platelets were low again, so he needed a platelet transfusion. Oh, and our lipase is extremely high again, which usually says pancreatitis, but I thought we were done with that. His glucose levels are fine so we might have a pancreatic cyst or blockage. Well we did an x-ray yesterday to look at his bowels in case there was blockage and the xray looked fine. I guess I didn't explain to Ammon that you always say treat when asked trick or treat. He picked the trick and the doctors are starting to look at me and say we really don't know what is going on. We didn't stand in line or pay for this ride!
I learned from a psychology class years ago (did I really graduate college 10 years ago?) that you can go through the grief cycle for any traumatic thing in your life, not just a death. So I would say I am in the frustrated/angry part, not so much angry but just frustrated that one thing gets fixed, another falls apart. On a good day when he is finally not crying for a few hours, someone will ask if this is his norm now. "No," I reply, "he is a happy boy usually." He usually has a very high pain tolerance, yes he has been on pain for months now, but that is not usual. I brought in a picture of Ammon from Brian's office wall to show them a smiling Ammon. Yes, he's had days where we feel like he is getting better, yes, there are days at home when he doesn't smile and we would be fine taking him home without a smile, but until he smiles at least one time per day (or even one time again), I am not saying he is back to normal.
He's been here in the PICU three weeks now. The doctors and nurses here are amazing, and several of them are even better than amazing. Some have really grown to love Ammon, some even from the first moment they met him, and for those he's becoming more than just another patient. But even these new friends don't want to see Ammon again tomorrow or next week, at least not in here. We continue to pray for more physical strength and healing for Ammon, we continue to hope he can return home soon. Thank you again everyone for your love, service, prayers, and faith on Ammon's behalf, they have been realized, because without them Ammon's journey so far would have been even more difficult.
Well the only thing that Ammon seems to be maintaining is our tricky status. His respiratory system was going up and down with his lung collapsing and opening. We started giving him DNase to thin out the mucus, which really helped today. He got a lot of junk out. His chest xray looked a lot better today, so we started to turn down his flow rate, but he didn't last long before he needed it turned back up. He was pretty mellow yesterday and last night, catching up on his sleep from the all nighter the night before. I was thinking this is nice, he's out of pain, resting, building up his reserves, but as the day progressed I started thinking he is looking really pale. Then during a CPT(respiratory, suctioning treatment) he wasn't crying and usually he cries towards the end. I mentioned this to the nurse and she checked his temp. Yep, he had a fever. So a phlebotomist came to to do a blood sample. It came back with very low hematocrit, and he needed a blood transfusion. Platelets were low again, so he needed a platelet transfusion. Oh, and our lipase is extremely high again, which usually says pancreatitis, but I thought we were done with that. His glucose levels are fine so we might have a pancreatic cyst or blockage. Well we did an x-ray yesterday to look at his bowels in case there was blockage and the xray looked fine. I guess I didn't explain to Ammon that you always say treat when asked trick or treat. He picked the trick and the doctors are starting to look at me and say we really don't know what is going on. We didn't stand in line or pay for this ride!
I learned from a psychology class years ago (did I really graduate college 10 years ago?) that you can go through the grief cycle for any traumatic thing in your life, not just a death. So I would say I am in the frustrated/angry part, not so much angry but just frustrated that one thing gets fixed, another falls apart. On a good day when he is finally not crying for a few hours, someone will ask if this is his norm now. "No," I reply, "he is a happy boy usually." He usually has a very high pain tolerance, yes he has been on pain for months now, but that is not usual. I brought in a picture of Ammon from Brian's office wall to show them a smiling Ammon. Yes, he's had days where we feel like he is getting better, yes, there are days at home when he doesn't smile and we would be fine taking him home without a smile, but until he smiles at least one time per day (or even one time again), I am not saying he is back to normal.
He's been here in the PICU three weeks now. The doctors and nurses here are amazing, and several of them are even better than amazing. Some have really grown to love Ammon, some even from the first moment they met him, and for those he's becoming more than just another patient. But even these new friends don't want to see Ammon again tomorrow or next week, at least not in here. We continue to pray for more physical strength and healing for Ammon, we continue to hope he can return home soon. Thank you again everyone for your love, service, prayers, and faith on Ammon's behalf, they have been realized, because without them Ammon's journey so far would have been even more difficult.
Wednesday, November 2, 2011
Happy Halloween
Brynn and Coleson had a great Halloween! Coleson didn't have school so he and Brynn came to the hospital in the morning to visit Ammon. Ammon was having a pretty good day just chillin', not experiencing too many problems. They had a carnival going on the third floor, so Coleson and Brynn got to have some sweets and their first taste of trick or treating for the year. The night before, I was home, putting Coleson to bed and he said he didn't know if he could go to sleep because he was so excited, it was like Christmas Eve excitement. Next the kids got to go to Brian's work to trick or treat in his office, Coleson had to make sure every single desk and stash of candy was hit. It was really funny when Coleson loudly declared that he needed "to go to find Daddy's boss" because he always has the jumbo size candy bars, only to learn that while declaring this Brian's boss, Kim, was standing right behind Coleson. Not one to feel embarrassed or shy, Coleson, Brynn, and Kim quickly marched down to Kim's office where he did not disappoint in the treat department. It was alot of fun for everyone to be with Brian's friends and coworkers. Then they went to their cousins house for the night party and serious trick or treating. Brynn diligently kept up with the big boys for the first dozen homes, and then it was mainly Brian carrying her from there. They all had a blast! The boys all weighed their candy and Coleson came out on top with a proud 7.2 pounds. At the end of the night, Brynn fell asleep in Aunt Brooke's arms and we had to drag Coleson to the car. It was so nice I got to see them on my one hour mandatory "break" from the hospital (I feel like a working Mom).
Coleson didn't want to be something he had to explain, but he was creatively an alien who took over an astronaut to sneak down to invade earth.
Ammon was a pirate, with an eye patch to boot! His fish wanted to try out his costume too.
Brynn was Goldilocks and got to wear her favorite shoes that are shiny white that click like high heels when she walks. I think they might be a little small, but no way was she going to take them off. Brynn loved her Uncle Kevin's costume who was dressed up as Woody! All night trick or treating, she would yell for Woody and then they'd try to tickle each other.
Thank you again to everyone for making this a great Halloween for our kids. Your love and support are so much appreciated by the kids, and even moreso by us.
Coleson didn't want to be something he had to explain, but he was creatively an alien who took over an astronaut to sneak down to invade earth.
Ammon was a pirate, with an eye patch to boot! His fish wanted to try out his costume too.
Brynn was Goldilocks and got to wear her favorite shoes that are shiny white that click like high heels when she walks. I think they might be a little small, but no way was she going to take them off. Brynn loved her Uncle Kevin's costume who was dressed up as Woody! All night trick or treating, she would yell for Woody and then they'd try to tickle each other.
Thank you again to everyone for making this a great Halloween for our kids. Your love and support are so much appreciated by the kids, and even moreso by us.
A Worthy Name...
One of Ammon’s doctors asked me recently where we came up with his name, he’d never heard of it before. It was a name that was clearly different from something common like Summer or Brian, and after several visits with Ammon it’s source had sufficiently peaked his interest. Well, just like everything else it seems, there is a story there, a story hidden behind the name. In some experiences, such as this one, it was clearly inadequate to simply reference the source of the name without also sharing the ‘why’. Some of you that are new to Ammon’s life experiences might not know all the key miracles that started even before Ammon was born, and have continued with him through to today. Maybe in some other posts we should share a few of these, because in some regards they also help us to understand better the why behind several of Ammon’s life experiences.
I relayed the following background to the doctor asking about Ammon’s name. Ammon was born suddenly, and under extreme circumstances. That’s really the more pleasant way of saying that he almost died. And without the presence of miracles, and people willing to act upon those miracles, we wouldn’t have been blessed with Ammon for these six years now. Ammon prevailed through many difficult health challenges, and after a little over two months in the NICU, and almost double his birth weight of 2 pounds 10 ounces, we were able to bring him home, and we couldn’t have been happier. In the first week of Ammon’s life we felt and saw the strength, faith, and joy that Ammon created, both physically and spiritually, just by being near him. We didn’t have any strong or lasting feelings of grief or disappointment, even under the difficult circumstances Ammon was experiencing, just because we were so grateful to have him with us, and because Ammon’s strong spirit always pushed those feelings out. Since we were surprised by Ammon’s early birth, we were also unprepared with any potential names (we thought we had a good two months to still think about names). As we pondered on this more and more, it became clear to us that Ammon’s name would need to be representative of the strength and faith that he shared with us. It wasn’t so much finding a name or an individual that Ammon was worthy to be named after, but that the name or individual was representative and worthy of Ammon.
I told the doctor that Ammon was named after a man of unmatched strength and honor, a religious leader that lived a long-time ago, that was full of faith, service, and kindness, to such a degree that he became a loved leader that inspired thousands of hardened people to become the most charitable and faithful people of their time. Ammon’s namesake, in every way, embodied the strength and joy that we felt and saw in being near Ammon. The doctor remarked that it sounded like Ammon had been well named.
A couple of days later the same doctor was talking with Summer and told her that he had asked me about Ammon’s name and what I had responded. Based on my response, and having come to know our young son over the past few weeks, he apparently wanted to learn even more about Ammon’s namesake. So he did an internet search, ended up at lds.org, and proceeded to learn about the original Ammon from long ago and the influence that Ammon had on the people he served. He then remarked to Summer that based on what he had learned about the Ammon from long ago, and his strength, service, and kindness, it was clear to him how our Ammon received his name. We tend to agree. It truly is a worthy name for such an individual.
I relayed the following background to the doctor asking about Ammon’s name. Ammon was born suddenly, and under extreme circumstances. That’s really the more pleasant way of saying that he almost died. And without the presence of miracles, and people willing to act upon those miracles, we wouldn’t have been blessed with Ammon for these six years now. Ammon prevailed through many difficult health challenges, and after a little over two months in the NICU, and almost double his birth weight of 2 pounds 10 ounces, we were able to bring him home, and we couldn’t have been happier. In the first week of Ammon’s life we felt and saw the strength, faith, and joy that Ammon created, both physically and spiritually, just by being near him. We didn’t have any strong or lasting feelings of grief or disappointment, even under the difficult circumstances Ammon was experiencing, just because we were so grateful to have him with us, and because Ammon’s strong spirit always pushed those feelings out. Since we were surprised by Ammon’s early birth, we were also unprepared with any potential names (we thought we had a good two months to still think about names). As we pondered on this more and more, it became clear to us that Ammon’s name would need to be representative of the strength and faith that he shared with us. It wasn’t so much finding a name or an individual that Ammon was worthy to be named after, but that the name or individual was representative and worthy of Ammon.
I told the doctor that Ammon was named after a man of unmatched strength and honor, a religious leader that lived a long-time ago, that was full of faith, service, and kindness, to such a degree that he became a loved leader that inspired thousands of hardened people to become the most charitable and faithful people of their time. Ammon’s namesake, in every way, embodied the strength and joy that we felt and saw in being near Ammon. The doctor remarked that it sounded like Ammon had been well named.
A couple of days later the same doctor was talking with Summer and told her that he had asked me about Ammon’s name and what I had responded. Based on my response, and having come to know our young son over the past few weeks, he apparently wanted to learn even more about Ammon’s namesake. So he did an internet search, ended up at lds.org, and proceeded to learn about the original Ammon from long ago and the influence that Ammon had on the people he served. He then remarked to Summer that based on what he had learned about the Ammon from long ago, and his strength, service, and kindness, it was clear to him how our Ammon received his name. We tend to agree. It truly is a worthy name for such an individual.
Subscribe to:
Posts (Atom)
