Well, we still aren't sure what's the root of the problems Ammon has. Some things have been eliminated and those were some worrisome things. This afternoon they did a cystogram (dye in the bladder) to see if there was a tear or leak in the bladder. There is no leak and that is good. However, they put in about 600 ml of dye and it still has not drained out. Where does it go? Why doesn't it drain? We are waiting for the urologists to make an appearance to see if they can figure out what's going on. We do know that his bladder is distended and so is his bowel. He sounds rattly and you can feel the rattles in the upper part of his chest but his lungs look great from the x-rays. He is in some pain and so it hurts for him to give a good clear cough to clear the rattles. Our worry is pneumonia unless the pain subsides. The surgical team will be coming up to see if they have any little tricks up their sleeve to get things moving.
This is probably due to an ileitis of some kind that happens after surgery. The ENT, Dr. Smith has been in to see Ammon and is on board for his future care. Dr. Pfeffer will be called if necessary to deal with lung issues.
He sounds a little better and his temperature is somewhat better. He's still not real interactive and responsive. They are going to give him a little bit of morphine to get him to sleep and to relieve the pain. He is not supposed to have any kind of feeds through his stomach right now. They are draining all kinds of ugly stuff out of the stomach so they can't give him Tylenlol. Right now he's a complicated little kid but it probably has to do with feeding him full feeds too soon and the flushing of the bowels that was a little too hard on his body. But how do you not do those things? So many questions. I hope we can get it all sorted out quickly.
Friday, September 4, 2009
Back at the Hospital
Yesterday about 11:00 a.m. Jim noticed that Ammon appeared to be really sick. Jim had been working with Ammon throughout the morning and hadn't noticed anything unusual. I had cathed and fed Ammon before I went to work and he seemed ok - not fine but ok. As the day progressed, Jim became more and more alarmed because he wasn't able to get any urine out of him. He fed him the usual amount but couldn't get anywhere the near amount of urine.
By the time I got home, I took one look at Ammon and felt great worry. We quickly called Steve Linford and asked him to come and help give Ammon a blessing and then we took off. I had to work an hour overtime last night so I didn't get home until about 6:45. Jim had contacted the urilogy department and Dr. Smith. They instructed us to get him to the ER.
The shortest time we've ever been able to get through the ER has been 5 hours. We got up there at about 8:45 and Ammon got into a regular room at about 3:00 a.m. I came home, arriving at about 3:15. It was, as Jess said, a very long night.
The only thing we know at this point is that Ammon has a massive UTI. He should never have been sent home without treating it. I didn't pick up on it because things looked normal. Apparently his urine was never tested while he was up there. We don't know for sure whether this can cause what's happening but he is one very sick boy. Instead of manifesting a fever, his body went the other direction - his temperature was below normal and I couldn't get him warm. He was cold, clammy, fairly non-responsive and his tummy hurts, being distended. There's a possiblity that there is a tear in his bladder but they think that is unlikely. I'm sure Ammon will go through more tests today. They started him on an IV antibiotic and Jim said this morning that Ammon was talking and seemed a little better. He might have been a little dehydrated although he was getting usual volumes of liquid.
The long and short of it right now is that he is sick, sick, sick and he's back in the hospital. You can reach us at room 3041 (medical floor). The main hospital phone # is 801-662-1000. I don't think you will need a code for this room. If you do, I will post it later this afternoon.
I plan to go to work this morning for a while (emergencies all over the place there) and will then go up to the hospital for the weekend and Jim will come home.
Today I'm really mad that we don't have a cell phone!!!!!
By the time I got home, I took one look at Ammon and felt great worry. We quickly called Steve Linford and asked him to come and help give Ammon a blessing and then we took off. I had to work an hour overtime last night so I didn't get home until about 6:45. Jim had contacted the urilogy department and Dr. Smith. They instructed us to get him to the ER.
The shortest time we've ever been able to get through the ER has been 5 hours. We got up there at about 8:45 and Ammon got into a regular room at about 3:00 a.m. I came home, arriving at about 3:15. It was, as Jess said, a very long night.
The only thing we know at this point is that Ammon has a massive UTI. He should never have been sent home without treating it. I didn't pick up on it because things looked normal. Apparently his urine was never tested while he was up there. We don't know for sure whether this can cause what's happening but he is one very sick boy. Instead of manifesting a fever, his body went the other direction - his temperature was below normal and I couldn't get him warm. He was cold, clammy, fairly non-responsive and his tummy hurts, being distended. There's a possiblity that there is a tear in his bladder but they think that is unlikely. I'm sure Ammon will go through more tests today. They started him on an IV antibiotic and Jim said this morning that Ammon was talking and seemed a little better. He might have been a little dehydrated although he was getting usual volumes of liquid.
The long and short of it right now is that he is sick, sick, sick and he's back in the hospital. You can reach us at room 3041 (medical floor). The main hospital phone # is 801-662-1000. I don't think you will need a code for this room. If you do, I will post it later this afternoon.
I plan to go to work this morning for a while (emergencies all over the place there) and will then go up to the hospital for the weekend and Jim will come home.
Today I'm really mad that we don't have a cell phone!!!!!
Tuesday, September 1, 2009
He's Awake!
The tube is out and he is awake! Last night they successfully extubated Ammon. Everything looks super and he is donig very well. He will move out of PICU some time today. He is smiling from ear to ear today. He's still a bit groggy. Dr. Smith said it will take a couple of days for all the medication to wear off. He doesn't appear to be in any pain. Tylenlol seems to be sufficient at this point.
He is on room air so he doesn't need supplemental oxygen and his blood gases were perfect today. The blood gas levels are one of the reasons he was put on a ventilator so we are watching those very carefully. All things are good today. He is soooo happy!
He is on room air so he doesn't need supplemental oxygen and his blood gases were perfect today. The blood gas levels are one of the reasons he was put on a ventilator so we are watching those very carefully. All things are good today. He is soooo happy!
Sunday, August 30, 2009
Rip Van Winkle
Ammon finally opened his eyes and woke up enough to nod his head in answer to some questions. He could move his hands a little and he breathed on his own for about a half hour. Unfortunately, I had left by that time so I didn't get to be there and reassure him that I had been there all day long.
About 4 p.m. this afternoon they stopped the paralytic medication but at the same time they gave him some pain medicaton that knocks Ammon out. They expected him to wake within about an hour. I left at 7 p.m. and he was still non-responsive. It is now 9:30 and I just talked to the nurse. That's when he told me Ammon did wake up and did respond. They said he was doing just great!
The plan now is to put him down again into a deep sedation until tomorrow late afternoon. After Dr. Smith's clinic, he will take Ammon into the OR to take a look at his trachea. If all looks well, then they will extubate him. We do know that some of the swelling has gone down because they can hear air escaping when they deflate the "cuff." That's a really good sign.
We're making progress!! Maybe by tomorrow night at this time Ammon will be awake and excited.
About 4 p.m. this afternoon they stopped the paralytic medication but at the same time they gave him some pain medicaton that knocks Ammon out. They expected him to wake within about an hour. I left at 7 p.m. and he was still non-responsive. It is now 9:30 and I just talked to the nurse. That's when he told me Ammon did wake up and did respond. They said he was doing just great!
The plan now is to put him down again into a deep sedation until tomorrow late afternoon. After Dr. Smith's clinic, he will take Ammon into the OR to take a look at his trachea. If all looks well, then they will extubate him. We do know that some of the swelling has gone down because they can hear air escaping when they deflate the "cuff." That's a really good sign.
We're making progress!! Maybe by tomorrow night at this time Ammon will be awake and excited.
Friday, August 28, 2009
Paralyzed & Sedated
The bag on the left is of his trach tube. The photos show the closure and where they opened things up a bit with the ring. You can't see any of that from this photo, but at that point, we were all pretty happy because the doctor said Ammon was doing "great!"
He doesn't look so great here. They have him so deeply sedated now that he is actually in a paralyzed state. He can open his eyes (and even cry a few tears), but last night he looked pretty rough. This morning he was peaceful and completely out of it. He will be intubated for three days. At that point, they will begin to wean him off the ventilator to see if the swelling is down. When they think it's pretty safe, he will go back to surgery so they can put a camera down there and look at things before they extubate him. Hopefully if all goes according to plan, he might be able to come home within a couple of days after that. I was planning to stay with him until Sunday night, but there is no place to sleep so I came home with Jim today after spending the morning with Ammon. I don't know that he even knows we were there. The nurses encouraged us to go home but we have to stay close to the phone and we need to check in often with them. I will go back up tomorrow and spend the day with him and do the same thing on Sunday. By then we should know more about how he's doing and what the timetable will be. I think any visit right now would be pointless. Give him about three or four more days.
Camilla was in SLC and when she realized that Gillian was at the hospital, she came up. They both had a tough time when they saw Ammon.
He doesn't look so great here. They have him so deeply sedated now that he is actually in a paralyzed state. He can open his eyes (and even cry a few tears), but last night he looked pretty rough. This morning he was peaceful and completely out of it. He will be intubated for three days. At that point, they will begin to wean him off the ventilator to see if the swelling is down. When they think it's pretty safe, he will go back to surgery so they can put a camera down there and look at things before they extubate him. Hopefully if all goes according to plan, he might be able to come home within a couple of days after that. I was planning to stay with him until Sunday night, but there is no place to sleep so I came home with Jim today after spending the morning with Ammon. I don't know that he even knows we were there. The nurses encouraged us to go home but we have to stay close to the phone and we need to check in often with them. I will go back up tomorrow and spend the day with him and do the same thing on Sunday. By then we should know more about how he's doing and what the timetable will be. I think any visit right now would be pointless. Give him about three or four more days.
Camilla was in SLC and when she realized that Gillian was at the hospital, she came up. They both had a tough time when they saw Ammon.
I had a long discussion with the ICU doctor this morning about DNR options. That means "Do Not Rescessitate". We will have things in order by the time we leave the hospital this time. I was very impressed by her and her willingness to listen to our concerns and wishes. We did not sign a DNR because we would like them to always try a reasonable process until it is deemed pointless, but we do want the option to decide when enough is enough. She agreed. We will meet with a group of people that help families face these kinds of decisions sometime between now and when Ammon leaves and will come home with a signed form not allowing ER personnel to try to intubate him from our home. They wouldn't be able to do it. Hopefully we will never have to face these kinds of decisions but every family needs to discuss it and talk about it.
The past several months have left us feeling helpless and powerless. This is our child and we know him better than anyone. We feel we should have the power to make decisions (with his consent and best understanding he can have) that will best serve his interests. It took an experience like this past one (ventilator dictated) to wake us up and help us realize that we need to have plans for any kind of situation. We have tended to think, "He's still young - we will worry about that later." We now know that we have to make decisions right now. Today I made sure we had plenty of wiggle room in those options to allow doctors to do what they can to preserve a life - but we want to make sure there is quality to that life and heroics isn't what we're looking for. Competency, caring and understanding is what we need from doctors. They are not "Gods" and we don't expect nor want them to act like it.
Am I second guessing what we've done? Yes. We know there are risks. However, even the doctor today said "You needed to try to add to that quality - you made the right decision." If he has to go back on a trach, then so be it - at least it will be our decision and we will know we have done our very best to offer some improved quality to this brave son's life. You've got to try some things in life even if they are hard. This is one of those things.
Thursday, August 27, 2009
IT'S OUT!!
Well, the deed is done but Ammon is paying a very high price to get this accomplished. This was a lot worse and more complicated than we thought it was going to be. The surgeon didn't actually start the surgery until about 2:45 by the time they got him prepped, asleep, positioned and intubated. We do now know that Ammon is a very difficult patient to intubate. He will need to
have fiber optic help with each future intuabtion. Dr. Smith told us that Ammon did very well and he was pleased with what he was able to do but did say that he recognizes that we all took a risk to get this done.
Ammon has to keep the intubation tube in place until he can breathe on his own and they find some "leaking" around the tubing indicating that the swelling has gone down. Then they will take him back into surgery to take a look at things inside before pulling the intubation tube out.
They will keep him nearly paralyzed for a few days so the tube won't move, come out or anything like unto that. He will be very sedated. He saw us, knew us, cried a few little tears when he realized that we wouldn't be sleeping in his room (no where to stay), but then he went to sleep.
I have to admit that I have second guessed our actions a million times today. Is this really worth all the pain? And then I thought how happy Ammon will be to sing and talk regularly, go swimming, do a "Make A Wish" and be able to go to a friend's house without a nurse. We're talking all about quality of life for him. So we're going forward with optimism. If this doesn't work, we'll get that trach back in and not question any longer. At least we will know we have tried our best to give him that quality of life.
Goodnight everyone. Pray for him.
have fiber optic help with each future intuabtion. Dr. Smith told us that Ammon did very well and he was pleased with what he was able to do but did say that he recognizes that we all took a risk to get this done.
Ammon has to keep the intubation tube in place until he can breathe on his own and they find some "leaking" around the tubing indicating that the swelling has gone down. Then they will take him back into surgery to take a look at things inside before pulling the intubation tube out.
They will keep him nearly paralyzed for a few days so the tube won't move, come out or anything like unto that. He will be very sedated. He saw us, knew us, cried a few little tears when he realized that we wouldn't be sleeping in his room (no where to stay), but then he went to sleep.
I have to admit that I have second guessed our actions a million times today. Is this really worth all the pain? And then I thought how happy Ammon will be to sing and talk regularly, go swimming, do a "Make A Wish" and be able to go to a friend's house without a nurse. We're talking all about quality of life for him. So we're going forward with optimism. If this doesn't work, we'll get that trach back in and not question any longer. At least we will know we have tried our best to give him that quality of life.
Goodnight everyone. Pray for him.
Part Two - photos
Ammon looks like David in this photo. August 27, 2009
The two of us messing around while we waited (and waited) for Dad to get ready.
Dr. Marshall Smith, ENT. He knows Jason's boss, Marlin Hansen and was excited to realize that Jason works for him. In fact, these ENTs have invited Dr. Hansen to come out to SLC as a guest lecturer this winter. Jason, why don't you stow away and come with him?? This is one very competent doctor and a very good man talking to Ammon. If there was ever any question about whether Ammon is able to make his wishes known, they should have heard this conversation. He told Dr. Smith exactly what he wanted and what he expected as the outcome of this surgery. There was no doubt that Ammon was in charge here. He speaks the language of doctors better than his own peers.
This is the child-life specialist that kept Ammon entertained until surgery time.
Here is how he looked just before they came to take him back to surgery. They gave him some Versced (sp?) which relaxes them and helps them not to be so nervous. Just before he fell to sleep he told the nurse, "I feel like I.....'m.... in......a....tr..a..n...c.......e. And then he was out.
Here is how he looked just before they came to take him back to surgery. They gave him some Versced (sp?) which relaxes them and helps them not to be so nervous. Just before he fell to sleep he told the nurse, "I feel like I.....'m.... in......a....tr..a..n...c.......e. And then he was out.
The BIG Day - Maybe
Well, the big day has finally arrived. Two days short of one year since Ammon's vocal was injured finds him back in the operating room having his trachea reconstructed. This operation is more serious and difficult than we understood but we're hoping it will have the results we hope for -- trach tube removed, ventilator taken away and life moving on in a more normal fashion.
Ammon was more nervous with this one than any he's ever been. He kept asking me what he would do if the tube isn't removed. I could only tell him that I thought he would adjust and go forward like he has done so many times before. He has been obsesssed about this thing for weeks. He hasn't been able to stop talking about it - real persevervation. He asked us to find a brother or somebody to help give him a blessing so we asked Lance to assist.
Last night we took him to my work party up South Fork and then stopped by Lance's on the way home. We only stayed long enough to get the blessing completed because we had so much to do when we got home. Ammon seemed to be greatly comforted by the blessing - at least until this morning. I greeted him with a cheery, "Hello bud - today's a big day." He answered, "A big nervous day."
Dr. Smith will take a piece of cartalidge (sp?) from Ammon's rib and will then make a ring from it. They will split the trachea opening where the scar tissue is and then insert the ring in that split. If they "core" out the scar tissue that has caused some of this trouble, then it will just grow back so they have to work with it. The trach tube will be removed and he will clean up the opening and close it up.
Ammon will have to go into ICU for a couple of days at least while they watch what happens with swelling. He will also have to be intubed until they are sure the swelling has abated. We are hoping that will only be a few hours, not a few days. Dr. Smith initially told us that Ammon would be in the hospital for 4-5 days. His nurse told Jim two days. This morning Dr. Smith told us 7-10 days! He said some of his patients are in that long and others go home within 4-5 days. Keep Ammon in your prayers, please. He will want to get that intubation tube out of his throat at the soonest possible moment.
Since they have closed up his airway from the trach tube, they have to make sure that his airway stays open, hence the ICU precautions. The surgery will take 3-4 hours. We just got word from the surgical nurse that Ammon is doing well and they are about half way done.
Friday, August 14, 2009
Minson's Wedding
Last night I went to Kyle Minson's wedding with Mom & Dad. The wedding was in Sandy at the greenhouses that Larkin Mortuary owns. Kyle married Heather Larkin.I saw everybody I knew and it was the best night ever!
Devin looked great and so did Alex.
I saw Mr. & Mrs. Minson and Grandpa Minson and Grandpa & Grandma Wells. Mrs. Swenson and Mrs. Hiatt were there and so was Mr. & Mrs. Bradley. Mr. & Mrs. Alanis and Mr. & Mrs. Marble sat at our table.
There were lots of people there! It was a very pretty place with so many plants and trees.
The bride looked great and so did Kyle. They met on their missions to Bulgaria.
Sunday, August 9, 2009
Wednesday, August 5, 2009
the best nurses ever
i think todd and richard and martha eagar are the best nurses ever i just love them
Tuesday, July 28, 2009
the wedding
We're getting ready for the wedding. I hope the Minsons can come .bye. And by the way I am excited that lance and david can come and lindsey is here with gabe and eva Its gillians wedding yeah.
Tuesday, July 21, 2009
I hate sleep studies
I hate sleep studies cause they pull my hair and beause they make me wear the net on my head
Monday, July 13, 2009
a years wait
I am getting my trach out in one month although I am going to miss richard and todd and micheal from maxim bye
Friday, July 3, 2009
the movie up
today we saw up the movie it was the best movie ever I give it two thumbs up p.s I like the stadium cinema it is the best theater ever i went with kaitlin she is my princess
Monday, June 29, 2009
Sunday, June 28, 2009
Pretty Boring Summer
It all starts off with no friends coming over, no visits, no family trips, no movies to go to. This is ridiculous! I would like my brothers back so please Lance and David come back. I miss you a lot this is the most boring summer ever. i would like for Kaitlin to come to the movies with me cause she is the prettiest sister ever but the nurse has to go with us and we are never alone.
We did go see a friend I have known since I was a baby and she is fun. I know this is a long post but I want everyone to know how boring my summer is.
Zoe Carlson and me.
Sunday, June 21, 2009
Sunday, June 14, 2009
my nurse Richard
I think Richard is the best nurse a kid could ask for I love you Richard you are the best nurse ever
Tuesday, June 2, 2009
joke of the day
Three handsome male dogs are walking down the street when they see a beautiful, enticing, female Poodle.
The three male dogs fall all over themselves in an effort to be the one to reach her first, but end up arriving in front of her at the same time.
The males are speechless before her beauty, slobbering on themselves and hoping for just a glance from her in return.
Aware of her charms and her obvious effect on the three suitors, she decides to be kind and tells them, "The first one who can use the words 'liver' and 'cheese' together in an imaginative, intelligent sentence can go out with me."
The sturdy, muscular black Lab speaks up quickly and says, "I love liver and cheese."
"Oh, how childish," said the Poodle. "That shows no imagination or intelligence whatsoever."
She turns to the tall, shiny Golden Retriever and says "How well can you do?"
"Um. I HATE liver and cheese," blurts the Golden Retriever.
"My, my," said the Poodle. "I guess it's hopeless. That's just as dumb as the Lab's sentence."
She then turns to the last of the three dogs and says, "How about you, little guy?"
The last of the three, tiny in stature but big in fame and finesse, is the Taco Bell Chihuahua.
He gives her a smile, a sly wink, turns to the Golden Retriever and the Lab and says....
Liver alone. Cheese mine.
Kaitlin and I found this on the internet. We thought it was pretty funny. It is the Joke of the Day. p.s i learned about steven speilberg, steven Hawking and saturn it was fun p.s richard helped me on this one enjoy bye
The three male dogs fall all over themselves in an effort to be the one to reach her first, but end up arriving in front of her at the same time.
The males are speechless before her beauty, slobbering on themselves and hoping for just a glance from her in return.
Aware of her charms and her obvious effect on the three suitors, she decides to be kind and tells them, "The first one who can use the words 'liver' and 'cheese' together in an imaginative, intelligent sentence can go out with me."
The sturdy, muscular black Lab speaks up quickly and says, "I love liver and cheese."
"Oh, how childish," said the Poodle. "That shows no imagination or intelligence whatsoever."
She turns to the tall, shiny Golden Retriever and says "How well can you do?"
"Um. I HATE liver and cheese," blurts the Golden Retriever.
"My, my," said the Poodle. "I guess it's hopeless. That's just as dumb as the Lab's sentence."
She then turns to the last of the three dogs and says, "How about you, little guy?"
The last of the three, tiny in stature but big in fame and finesse, is the Taco Bell Chihuahua.
He gives her a smile, a sly wink, turns to the Golden Retriever and the Lab and says....
Liver alone. Cheese mine.
Kaitlin and I found this on the internet. We thought it was pretty funny. It is the Joke of the Day. p.s i learned about steven speilberg, steven Hawking and saturn it was fun p.s richard helped me on this one enjoy bye
Monday, June 1, 2009
Dog Bite
Friday afternoon, after the last day of school, my best buddy, Devin got bit by a dog. He had to get 25 stitches and it hurt. On Sunday, Dev got a fever and his mother took him back in to see the doctor because he now has cellutis. Mom visited him today and took this picture. It looks like it hurts really bad.
I will miss you, Devin. Get better.
Friday, May 29, 2009
Last Day of Elementary School!
Today, May 29, 2009 was the last day of elementary school for Ammon. This is now the first time in about 35 years that Jim and I have not had a child in elementary school. Unbelievable!Ammon came home today and said it was a very emotional day for him. He said his aide, Mrs. Gebert, cried a lot (and the nurse agreed wtih that assessment). As Ammon was telling me about it, he began to cry again. But he made it through and he is now officially a 7th grader, going on to Jr. High next fall.
We took this photo of him this morning before he left for the bus.
Congratulations, Ammon!
Yesterday he came home as a cheesehead. One of the teachers is from Wisconsin and she thought Ammon might like this. He thinks it's pretty cool!
They had field day yesterday where they play all kinds of games outside. He had a great time. The entire week has been full of fun activities. I hope Ammon will post on his own and tell us all about the things he's done all week.
Monday, May 25, 2009
Graduation Pictures
Ammon looking back at me just before graduation.
The tall boy in the middle is one of Ammon's best buddeis, John Horton. He was honored because of participation in the Geography Bee.
Ammon's other best buddy, Devin Minson, is the one with the very white hair. He was honored for two races he placed in during the Hershey Track Meet.
Here are the four sixth grade classes at Foothills Elementary School.
This is just as they announced Ammon's name when he went to get his certificate.
This is the melt-down with Mrs. Minson after he came back to his seat.
Friday, May 22, 2009
More Graduation Stuff
I wanted to add a little to Ammon's post about graduation. I was able to slip away from work to go to the ceremony. Ammon didn't think I would be there because I had been requested to be to a new training session at work. I hadn't planned to go to the graduation because of that (and I didn't even know there was a graduation this week until the night before), but as the day wore on, I realized that I have never been on any field trips with any of my kids. I have rarely been to any of Ammon's school activities because I'm always hoarding my hours at work to save up for some "big" event to make sure I have the hours I will need. I struggled all morning long realizing how much I wanted to be there and decided I needed to be a mom and not an employee - so I told my boss I was going but I would be back as soon as it was over.
I'm so glad I went because I saw and experienced something I had not anticipated. Towards the end of the ceremony, all the 6th grade classes went up on stage to sing two very nice songs. Ammon knew every word and sang them all, clapping his hands with the group, moving his shoulders with the beat, etc. He was joyful in the songs. After the songs were done, they read the names of all the kids to get their certificates. They had asked that the audience hold their applause until an entire class was done and asked that no one hoot and holler because there were some kids who didn't have parents there and they didn't want anyone to feel badly. The first class was read and applause was rendered after they had received their certificates. Ammon's class was next and he was the first. They read his name, "Ammon Clark!" and the entire auditorium errupted into shouts and applause. All the kids in 6th grade were smiling, shouting and clapping for him. All the parents followed suit. I was stunned! As soon as he got his certificate, he headed back to his original seat by his aide, Keri. We were sitting directly behind him two rows away. He got to Keri and burst into tears. He cried and cried and cried! I started to cry as well. He told me last night that he was crying because he is happy to be going to junior high next year but he's very nervous. Part of it, I'm sure, is the fact that his best friends will not be going to the same school and Keri will no longer be his aide. There were so many emotions yesterday in that brief moment. The polite applause and no shouting rule was right back - they did not applause for any other student that way.
I'm so grateful for the outpouring of care and love that is shown to Ammon in so many small ways. We will miss this school but I have no doubt that Ammon's infectious personality will affect those in the new school just the same way.
I'm so glad I went because I saw and experienced something I had not anticipated. Towards the end of the ceremony, all the 6th grade classes went up on stage to sing two very nice songs. Ammon knew every word and sang them all, clapping his hands with the group, moving his shoulders with the beat, etc. He was joyful in the songs. After the songs were done, they read the names of all the kids to get their certificates. They had asked that the audience hold their applause until an entire class was done and asked that no one hoot and holler because there were some kids who didn't have parents there and they didn't want anyone to feel badly. The first class was read and applause was rendered after they had received their certificates. Ammon's class was next and he was the first. They read his name, "Ammon Clark!" and the entire auditorium errupted into shouts and applause. All the kids in 6th grade were smiling, shouting and clapping for him. All the parents followed suit. I was stunned! As soon as he got his certificate, he headed back to his original seat by his aide, Keri. We were sitting directly behind him two rows away. He got to Keri and burst into tears. He cried and cried and cried! I started to cry as well. He told me last night that he was crying because he is happy to be going to junior high next year but he's very nervous. Part of it, I'm sure, is the fact that his best friends will not be going to the same school and Keri will no longer be his aide. There were so many emotions yesterday in that brief moment. The polite applause and no shouting rule was right back - they did not applause for any other student that way.
I'm so grateful for the outpouring of care and love that is shown to Ammon in so many small ways. We will miss this school but I have no doubt that Ammon's infectious personality will affect those in the new school just the same way.
Thursday, May 21, 2009
Friday, May 1, 2009
Friday, April 24, 2009
Painful Transitions
Today we all met with Ammon's IEP team. IEP means Individualized Education Plan. Any child that has any kind of disability, whether it's mental or physical, has the right to an IEP. A group of people assemble that will work with the child during the school year. The parents, the child and any one else that's interested in the child's progression are invited. Goals are set and then reviewed. We usually have two a year for Ammon. This year was a major one for Ammon because he is transitioning from elementary school to junior high next year. He will also be leaving some of his best friends. Half his friends will go to school in Spanish Fork next year. (That includes John and Devin.) Ammon has to go to school in Payson or he won't be able to ride a bus and we need that service. His friends in the ward will be in school with him, but this is a very big transition.
We met the special ed coordinator/teacher from the new school at the meeting today. She seems to be very much on the ball and I think she will be a great teacher for Ammon.
What makes this a painful transition is that we will be leaving behind some people that have become very dear and special to all of us. I looked around the table at all the people that have helped Ammon in so many ways. Keri Minson has been with him the longest. She has been one of his aides since 1st grade. She has seen him change from a timid, unhappy little kid to an outgoing child that loves school. She has been the major contributor to his improved handwriting skills as she keeps telling him to "do it over until I can read it." She has been his friend most of all and one of his biggest supporters in all he does. Mrs. Swenson has really helped us make some mental transitions as to where Ammon's abilities really are and what can be expected of him. She has guided us throughout the last several years and has loved Ammon fully. Mrs. Glen has worked hard with him through speech; Leca Hicken is his caseworker for DSPD and has been hugely (!) helpful in so many areas. Mrs. Turner has been Ammon's regular classroom teacher and although he doesn't spend a lot of time in her room, she has been wonderful with him and given him every reason to like being in her room. Mr. Scholenberger (the principal) knows all the legal jargon and has been supportive with the entire team in finding ways to help Ammon. He, too, has a son with severe disabilities and so he knows what we are experiencing and he is way ahead of us in the transition periods of our kids' lives. Jennifer Stoker is the school nurse and she is also a member of our ward. She has been helpful with medical questions and is one of the sweetest people we've ever met. Annette Gebert is another of Ammon's aides and has been for two years. She is very kind and gentle with Ammon and he adores her. Maybe she's been too kind on occasion. :) We don't know the speech therapist well, but he has worked hard with Ammon this year and we appreciate what he does.
How does one give appropriate thanks to people like this that have loved our son like their own? Thank you seems so inadequate, but our hearts are full of thanks for the great experiences Ammon has had in school with these people. There was a point in his early school experience that we felt like pulling him out because he would come home so unhappy, having been told he was a naughty boy and he simply didn't understand why he was told that. Through the years, his abilities and personality has become defined so we all know who he is and what he can do. He loves going to school! He never wants to miss a day. What a change we've all seen in the past seven years! I attribute a great deal of that positive change to a great team at Foothills Elementary School. We love you and will miss you like crazy! We have confidence in Ammon's adaptability to believe he is going to go on for more great experiences.
Thank you to all for giving him a great foundation!
We met the special ed coordinator/teacher from the new school at the meeting today. She seems to be very much on the ball and I think she will be a great teacher for Ammon.
What makes this a painful transition is that we will be leaving behind some people that have become very dear and special to all of us. I looked around the table at all the people that have helped Ammon in so many ways. Keri Minson has been with him the longest. She has been one of his aides since 1st grade. She has seen him change from a timid, unhappy little kid to an outgoing child that loves school. She has been the major contributor to his improved handwriting skills as she keeps telling him to "do it over until I can read it." She has been his friend most of all and one of his biggest supporters in all he does. Mrs. Swenson has really helped us make some mental transitions as to where Ammon's abilities really are and what can be expected of him. She has guided us throughout the last several years and has loved Ammon fully. Mrs. Glen has worked hard with him through speech; Leca Hicken is his caseworker for DSPD and has been hugely (!) helpful in so many areas. Mrs. Turner has been Ammon's regular classroom teacher and although he doesn't spend a lot of time in her room, she has been wonderful with him and given him every reason to like being in her room. Mr. Scholenberger (the principal) knows all the legal jargon and has been supportive with the entire team in finding ways to help Ammon. He, too, has a son with severe disabilities and so he knows what we are experiencing and he is way ahead of us in the transition periods of our kids' lives. Jennifer Stoker is the school nurse and she is also a member of our ward. She has been helpful with medical questions and is one of the sweetest people we've ever met. Annette Gebert is another of Ammon's aides and has been for two years. She is very kind and gentle with Ammon and he adores her. Maybe she's been too kind on occasion. :) We don't know the speech therapist well, but he has worked hard with Ammon this year and we appreciate what he does.
How does one give appropriate thanks to people like this that have loved our son like their own? Thank you seems so inadequate, but our hearts are full of thanks for the great experiences Ammon has had in school with these people. There was a point in his early school experience that we felt like pulling him out because he would come home so unhappy, having been told he was a naughty boy and he simply didn't understand why he was told that. Through the years, his abilities and personality has become defined so we all know who he is and what he can do. He loves going to school! He never wants to miss a day. What a change we've all seen in the past seven years! I attribute a great deal of that positive change to a great team at Foothills Elementary School. We love you and will miss you like crazy! We have confidence in Ammon's adaptability to believe he is going to go on for more great experiences.
Thank you to all for giving him a great foundation!
Tuesday, April 21, 2009
Friday, April 10, 2009
Sad Outcome
Well, the day has come and gone - it was long, tiring and extremely frustrating. Ammon's surgery was scheduled for 1:00 p.m. We were supposed to be there by noon. We got there a little early when they told us the surgery had been moved back to 2:00. A short time later they told us it wouldn't be until 3:00 p.m. Here is a picture of Ammon waiting in the surgical waiting area before he got the Versed, which makes him pretty loopy. He really didn't need the medication because he was very, very calm and not the least bit nervous. 
Ammon was very certain that he was going to get the trach tube removed today. We weren't so sure and tried to tell him a couple of nights before that it might not happen. His response was, "Well, I'll just have to have my brothers come and give my head a blessing!" David did come up last night and assist in giving Ammon the blessing. Jim gave the blessing and didn't bless him that the vocal cords would be fine and that the tube would come out. He blessed Ammon to have peace no matter what the outcome would be.
The tube did not come out. The ENT didn't even do what he told Jim a month earlier what he was going to do. He had initially said he would remove a small piece of scar tissue at the bottom of the vocal cord. For some reason, he didn't do that. It wasn't clear in our discussion whether this piece of tissue had become hardened and so would be a permanent thing or if he just didn't see what he thought he saw earlier. He did remove some scar tissue that had formed underneath the opening of the tracheostomy and took a long look at the cord. He said Ammon has an airway opening of about a two year old toward the bottom of the area but because Ammon doesn't breathe very deeply, he was able to get away with breathing without much trouble. He did say that it would be possible to function without the trach as far as the vocal cord, but he talked to the pulmonologist and Dr. Valdez and they all agreed that it would be very dangerous for Ammon to sleep at night without the aid of the ventilator. We are pretty upset about this because the blood gas build-up is soley the basis for this decision. He had very high blood gases and protein in the blood while he was so sick from September to December. Of course they were high - he couldn't breathe due to the blocked airways! They didn't give us an option, just as we thought might happen. Because we didn't have the legal papers in our hands (Dr. Valdez has them for some reason), we came home with the trach tube still there.
We have no intention of attending the clinics they keep calling us about. We have little intention of dealing with the pulmonologists at all unless it is on our terms. One of those terms is that one night in the hospital they will cap the trach tube and check the blood gases now that he can breathe - and this will be without the ventilator. If we are proved wrong, then it will be a different situation. If we prove them wrong, then we have grounds to remove the tube.
I asked Dr. Smith (ENT) during our consult after the surgery, if he considered the ventilator to be life support. He thought for a long time and very carefully tried to say something - all he could say was, "Well, the bi-pap machine could be called life support, too." I said, "No, that is small and can be taken with us. With a bi-pap machine, he can get in the wind, the dust, the water, and doesn't have to have a nurse in his face 24 hours a day. There is a HUGE difference in the quality of his life now versus what it used to be."
The anesthesiologist walked me back to the room where Ammon was recovering and tried to say nice things like, "Well, lots of kids have these and they eventually get off of them or learn to live with them; it isn't so bad." I snapped back, "Do you have a child on a ventilator or trach?" He said he didn't. And so I said, "Don't try to tell me you understand what it's like because you don't. You have no idea what he goes through."
We were not the popular kids on the block today. We will get the papers and sign them and if/when the time comes for Ammon to say, "Enough," then he can say that and it's done and it will be legal.
Once we got home and Ammon was awake enough to realize what really happened, he cried and cried. He said, "My life's a wreck. I hate it." I rocked him on my lap sitting in his chair and talked about all the cool things in his life like his 10 brothers and sisters that love him. We talked about his computer and his friends. He began to settle down and understood what I was saying. He is calm now and can smile.
After the blessing that Jim gave him last night, I began to cry just a little. Ammon turned around and saw me. He came over and gave me a big hug. He then said, "You're sniffling, Mom." I told him I was. He said, "What's wrong?" I said, "I just love you." And then he took his thumb and gently wiped my tears away. He looked long and deeply into my eyes without saying anything but his look was one of a grown man comforting his mother. It was such a strange event but so profound.
If anyone has any idea that we want to turn the machines off so he will leave us, put that thought to rest because that is not what our issue is about. I cannot imagine my life without him and the joy he brings to so many people. His life "is what it is" and we will have to make the most out of the time he has. I believe we also have a responsiblity to help him have quality to his life - we are still sorting all this out and it's a very emotional issue. Hopefully we'll have open enough hearts to know what the Lord would want for Ammon.
Ammon was very certain that he was going to get the trach tube removed today. We weren't so sure and tried to tell him a couple of nights before that it might not happen. His response was, "Well, I'll just have to have my brothers come and give my head a blessing!" David did come up last night and assist in giving Ammon the blessing. Jim gave the blessing and didn't bless him that the vocal cords would be fine and that the tube would come out. He blessed Ammon to have peace no matter what the outcome would be.The tube did not come out. The ENT didn't even do what he told Jim a month earlier what he was going to do. He had initially said he would remove a small piece of scar tissue at the bottom of the vocal cord. For some reason, he didn't do that. It wasn't clear in our discussion whether this piece of tissue had become hardened and so would be a permanent thing or if he just didn't see what he thought he saw earlier. He did remove some scar tissue that had formed underneath the opening of the tracheostomy and took a long look at the cord. He said Ammon has an airway opening of about a two year old toward the bottom of the area but because Ammon doesn't breathe very deeply, he was able to get away with breathing without much trouble. He did say that it would be possible to function without the trach as far as the vocal cord, but he talked to the pulmonologist and Dr. Valdez and they all agreed that it would be very dangerous for Ammon to sleep at night without the aid of the ventilator. We are pretty upset about this because the blood gas build-up is soley the basis for this decision. He had very high blood gases and protein in the blood while he was so sick from September to December. Of course they were high - he couldn't breathe due to the blocked airways! They didn't give us an option, just as we thought might happen. Because we didn't have the legal papers in our hands (Dr. Valdez has them for some reason), we came home with the trach tube still there.
We have no intention of attending the clinics they keep calling us about. We have little intention of dealing with the pulmonologists at all unless it is on our terms. One of those terms is that one night in the hospital they will cap the trach tube and check the blood gases now that he can breathe - and this will be without the ventilator. If we are proved wrong, then it will be a different situation. If we prove them wrong, then we have grounds to remove the tube.
I asked Dr. Smith (ENT) during our consult after the surgery, if he considered the ventilator to be life support. He thought for a long time and very carefully tried to say something - all he could say was, "Well, the bi-pap machine could be called life support, too." I said, "No, that is small and can be taken with us. With a bi-pap machine, he can get in the wind, the dust, the water, and doesn't have to have a nurse in his face 24 hours a day. There is a HUGE difference in the quality of his life now versus what it used to be."
The anesthesiologist walked me back to the room where Ammon was recovering and tried to say nice things like, "Well, lots of kids have these and they eventually get off of them or learn to live with them; it isn't so bad." I snapped back, "Do you have a child on a ventilator or trach?" He said he didn't. And so I said, "Don't try to tell me you understand what it's like because you don't. You have no idea what he goes through."
We were not the popular kids on the block today. We will get the papers and sign them and if/when the time comes for Ammon to say, "Enough," then he can say that and it's done and it will be legal.
Once we got home and Ammon was awake enough to realize what really happened, he cried and cried. He said, "My life's a wreck. I hate it." I rocked him on my lap sitting in his chair and talked about all the cool things in his life like his 10 brothers and sisters that love him. We talked about his computer and his friends. He began to settle down and understood what I was saying. He is calm now and can smile.
After the blessing that Jim gave him last night, I began to cry just a little. Ammon turned around and saw me. He came over and gave me a big hug. He then said, "You're sniffling, Mom." I told him I was. He said, "What's wrong?" I said, "I just love you." And then he took his thumb and gently wiped my tears away. He looked long and deeply into my eyes without saying anything but his look was one of a grown man comforting his mother. It was such a strange event but so profound.
If anyone has any idea that we want to turn the machines off so he will leave us, put that thought to rest because that is not what our issue is about. I cannot imagine my life without him and the joy he brings to so many people. His life "is what it is" and we will have to make the most out of the time he has. I believe we also have a responsiblity to help him have quality to his life - we are still sorting all this out and it's a very emotional issue. Hopefully we'll have open enough hearts to know what the Lord would want for Ammon.
Monday, April 6, 2009
Great Uncertainty
Tonight Jim and I (Mom) met with Dr. Valdez to discuss Ammon's future and how we can best help him continue to be healthy. At the root of the discussion is the upcoming surgery to remove a tiny piece of scar tissue at the bottom of one of us vocal cords. That surgery is scheduled for this coming Friday, April 10, 2009. The original plan was to do that surgery, do a micro-layer endoscopy to check the underside of the vocal cords and then, if all looked good, remove the trach tube. We have been trying to stay calm and not get our hopes up, but it's difficult to do. Ammon told all his friends at school today that he was going to get the tube taken out. We can't promise that will happen.
One of the difficulties to all this is that the pulmonologists at PCMC have become involved and are saying that we cannot remove the tube due to several issues Ammon has. He has restrictive lung disease, a central brain issue causing him to have sleep apena, and something else that I can't remember. What they don't realize is that Ammon has lived with all this his entire life without a ventilator and has done remarkably well. They conducted a sleep study (actually two of them) when Ammon was the sickest he's ever been during all the mess with the closed airways. We don't feel that the tests were conclusive or really show the truth of what Ammon's sleeping patterns are. They may want to re-take the sleep study but if they do, they will have to pay for it because it won't be covered through insurance or Medicaid. The tests cost about $2500.00.
We met with Dr. Valdez to see what legal issues this could present and to see if we, as parents, had any say about whether we would keep him on the ventilator or not. I was hoping to never get to this point in any child's life, but we are there. Having Ammon on a ventilator truly does diminish the quality of his life - the trach diminishes it even more because there's so much he can't do without "paying" for it later. We don't want Ammon to be tied to his bedroom or live in fear that he could die. We want him to live (!) for however long he has to live and be happy in the process. Dr. Valdez is going to call the pulmonologists tomorrow and talk about Ammon as a person, not just a patient they are intent on keeping alive at any cost. While we appreciate their concerns and efforts on Ammon's behalf, we feel that the pulmonologists have become intrusive in our lives. We want to be free to make the decisions that would be best for Ammon all the way around.
If the vocal cords aren't completely safe and healthy, then there is no question that the tube stays in, but if the problem for which the tube was placed has been resolved, then we have no intention of keeping it in.
This has been an emotional time for us, as parents. We don't want to have to make final decisions and we won't. However, we reserve the right to make those decisions in behalf of Ammon until he is old enough to have full understanding so he can make his own decisions. We will have to have papers signed to show what our desires are accepting full responsibility for whatever happens in the future.
I would suggest that all of you think about getting a living will in place specifying your desires for life support right now, no matter how old or young you are. Your wishes need to be met and it would be cruel to leave those decisions up to a spouse or child simply because you didn't legally make the decisions for yourself.
We hope the next blog will be one of excitement and joy coming from Ammon. We're hoping, crossing our fingers and praying like crazy for a good, peaceful outcome to all of this.
One of the difficulties to all this is that the pulmonologists at PCMC have become involved and are saying that we cannot remove the tube due to several issues Ammon has. He has restrictive lung disease, a central brain issue causing him to have sleep apena, and something else that I can't remember. What they don't realize is that Ammon has lived with all this his entire life without a ventilator and has done remarkably well. They conducted a sleep study (actually two of them) when Ammon was the sickest he's ever been during all the mess with the closed airways. We don't feel that the tests were conclusive or really show the truth of what Ammon's sleeping patterns are. They may want to re-take the sleep study but if they do, they will have to pay for it because it won't be covered through insurance or Medicaid. The tests cost about $2500.00.
We met with Dr. Valdez to see what legal issues this could present and to see if we, as parents, had any say about whether we would keep him on the ventilator or not. I was hoping to never get to this point in any child's life, but we are there. Having Ammon on a ventilator truly does diminish the quality of his life - the trach diminishes it even more because there's so much he can't do without "paying" for it later. We don't want Ammon to be tied to his bedroom or live in fear that he could die. We want him to live (!) for however long he has to live and be happy in the process. Dr. Valdez is going to call the pulmonologists tomorrow and talk about Ammon as a person, not just a patient they are intent on keeping alive at any cost. While we appreciate their concerns and efforts on Ammon's behalf, we feel that the pulmonologists have become intrusive in our lives. We want to be free to make the decisions that would be best for Ammon all the way around.
If the vocal cords aren't completely safe and healthy, then there is no question that the tube stays in, but if the problem for which the tube was placed has been resolved, then we have no intention of keeping it in.
This has been an emotional time for us, as parents. We don't want to have to make final decisions and we won't. However, we reserve the right to make those decisions in behalf of Ammon until he is old enough to have full understanding so he can make his own decisions. We will have to have papers signed to show what our desires are accepting full responsibility for whatever happens in the future.
I would suggest that all of you think about getting a living will in place specifying your desires for life support right now, no matter how old or young you are. Your wishes need to be met and it would be cruel to leave those decisions up to a spouse or child simply because you didn't legally make the decisions for yourself.
We hope the next blog will be one of excitement and joy coming from Ammon. We're hoping, crossing our fingers and praying like crazy for a good, peaceful outcome to all of this.
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