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.

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.
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


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.

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.... 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

two weeks left

two more weeks until I get my trach out i hope you can pray for me

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