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!
Friday, April 24, 2009
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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