A Funny Boy

Ammon has had a good week. We are slowly learning the tricks of the trade now as far as his care goes. He remembers the order of the machines and reminds us what to turn on next. He puts his own little "voice" on when he wants to talk and he is very helpful. His sense of humor has returned and we are really enjoying him again.
We have had a home-health company come up and it may be possible for us to get some home nursing care for Ammon so Jim and I can be gone together sometimes. We still haven't figured out the school issues but hopefully we'll have more information by next week.
Ammon's life is definitely more complicated now, but he has adjusted quite well. His voice is pretty croaky, but he can speak and we can hear him better now. We are hopeful that the vocal cords improve and his voice becomes even stronger.

Sign Language

Hangin with his favorite sisters!

"I"
"Love"

"You"

Ammon and I are hangin out this afternoon. Ammon has decided that he wants to learn sign language. http://http//commtechlab.msu.edu/sites/aslweb/browser.htm Since he got home, he has been using this website to learn certain things. He likes to sign "Merry Christmas". I am so happy to have this little guy home! It breaks my heart that he cant talk. Well, he can.. but hardly at all. I will miss the singing and the jokes.. and the random yells across the house saying, "Hey Gillian, I love you" every 5 minutes. However, it makes me happy to see that he is willing to learn sign language and that he stays so positive! We'll have to let you know how the sign language comes along. Anyway, we are happy to have you home Ammon!
-Gillian

A Snowy Ride Home

Ammon came home today, Dec. 22, 2008 after two surgical procedures including a tracheostomy. We were at PCMC for over two weeks with this last stay. We are happy to report that Ammon still has his sense of humor and still smiles and laughs. He was very excited to be coming home. Jim and I spent Sunday afternoon and night with him passing our "test" to see if we knew how to take care of all his needs. The only real trouble we seem to have is how to get the ventilator working properly. Below are some photos of people and happenings at the hospital the day he went home. We seem to attract musicians at hospitals. This is Ross Faison playing his "Irish" flute for us. He is the respiratory therapist that spent all day Saturday with us teaching us CPR and all other things related to the ventilator. The man in the background who is smiling is Dr. D'Fharti (sp?) who is the pulmonologist that is the one working with us. He was very thorough and very kind to all of us. I was impressed with his skill and knowledge.

Ammon missed Kaitlin almost more than anyone. He was really happy to see her for the few minutes she came up to leave a car for me to get to work on Monday.

The Salcidos came up Sunday afternoon and brought games and goodies. The kids played games with Ammon and they also sang some beautiful songs they know from the Children's Choir. It made all of us cry because they sounded angelic. What a treat!

Ross not only plays the flute, but he also plays the mandolin. We enjoyed his sense of humor very much. He taught Ammon a few silly songs about mucus (snot), etc., since that's what we are dealing with these days. Hey, we might as well laugh so he gave us some good reasons to laugh about our life now.

Within a half hour after getting home, driving through very slick and snowy conditions, a respiratory therapist from IHC showed up with a truck-load of equipment and spent the next hour setting it up and showing us how to work it. We now have tubing running all through the house and boxes and bags everywhere. It will take a few days to figure out where to put it all. The suction machine is on top of the small cabinet to the right. The equipment we need is now contained in the larger cabinet.


Here is Ammon hooked up to the ventilator. He only needs this for nighttime. He can breathe on his own but it kicks in when he doesn't breathe deeply enough. He has Restrictive Lung Disease - that means that his lungs haven't developed properly and so he doesn't breathe very deeply when he's asleep causing high levels of carbon dioxide in his system which can lead to spasms in the lungs and eventually death if not taken care of properly. We are uncertain about all of this because he has had this for 13 years and it's never been addressed. He has seemed to be relatively healthy and fine. He wasn't on a ventilator when he was in the PICU after the trach was placed and he wasn't on the ventilator for over a week on the regular surgical floor so we don't know why all of a sudden there is this big need to do all of this.

Ammon's voice is quite strong now during the day but he really looses the energy to project by evening. He is so happy that he can talk. When he is on the ventilator, he can't make any sound so he continues to write notes to us.

Hopefully this will become routine within a short time and we'll figure out how to take care of him without a sense of panic or worry. He is relatively happy and is tolerating all this invasive "stuff." If he can be happy, then we had better be happy too!

We are definitely happy to be home - safe and sound.

A Fantastic Day!

Ammon had a fantastic day today for several reasons. The Grizzlies Hockey team came to visit him and he thought that was cool. Mom went up to visit and to get some training on how to care for the trach and so he was happy to see her. He was especially happy to see Mom because she brought a fantastic gift! What you see here is a quilt that the BYU Purchasing/Travel Dep't made and then tied money all over the quilt. They brought it up to me last night and said the quilt was made for Ammon. The fabric has the life of a young Mormon boy - from a baby to being married in the temple. It is an absolutely awesome quilt!! We are so grateful for the thoughtful people that care so much for Ammon. Thank you, friends and co-workers!!

Here's Mom & Dad enjoying the gift with Ammon.

In this photo Ammon's joy shows because he discovered that he can talk!!! The doctors changed to a different trach tube hoping the new one would allow him to talk. During the day when they tried to help him, Ammon couldn't get a single sound out. While I was there, he found out that he could actually talk and the first thing he said was "Mommy, I love you!" We were all jumping up and down for joy. Ammon needs to have a voice. He has a lot to tell the world and a lot to teach us.

He still has a significant bacterial infection in his blood and so that may keep him in the hospital longer than we would like. It has improved a lot today. Jim and I have about 28 hours of training that we have to complete before we can bring him home. We did our first 2 hours tonight and will hopefully finish by Saturday night. They have told Ammon that he may be able to go home as early as Monday. He is also fighting an ear infection and may need a different antibiotic to clear it up. All in all, there is great hope for a return home and for a smoother road for this young man.

I felt like Christmas came early today with the wonderful quilt and with Ammon being able to speak again.

Mom

Tough Afternoon

Ammon had a fantastic morning. He slept very well last night without using the bi-pap machine. He sounded very clear all morning long but a little after noon, he started to shiver uncontrollably. We covered him in blankets that had been warmed. It took about 20 minutes to get him warmed up again. And then he got a fever that spiked almost immediately to 103 degrees. There had been no warning whatsoever that anything was wrong. The poor nurse was run ragged by the end of the day. The secretions got pretty prolific for want of a better word as well. He has had to be suctioned out several times an hour but it's nothing as bad as he had in August. We expected some secretions so I haven't been too worried about that.
The nurse cathed him shortly after all this started and the urine was the color of cranberry juice. Sure enough, he has a nasty UTI. When she cathed him before, it seemed ok. Boy, when this kid decides to so something, he really does it with a bang. They are treating him with a broad spectrum antibiotic until the results of the culture come back in about 48 hours. We don't know if that is what the fever was all about or not. It wasn't a very fun afternoon for Ammon but he has given thumbs up to everyone and continues to smile. Tonight his right side hurts. I don't know what from. Perhaps it is from the UTI (or kidney infection?). Hopefully the urologists will pay us a visit.
We hope we have a quiet night tonight and that he feels a little better by morning.

The Deed is Done - Whew!

This is Kim - the nurse that took care of Ammon today. She was very good at explaining the pros of trachs. She is an expert in their care and I'm glad she was the one that talked us through this. This was in the waiting area of the surgery center just before Ammon went in for the procedure. Dr. Marshall Smith (ENT) on the left and Dr. Tanner (anesthesiologist) on the right.
After the surgery Ammon was very alert, giving thumbs up and writing notes to us. He looks fantastic and is very relieved. He is breathing very, very well.

He is smiling because he said it is much, much easier to breathe. He is in a little pain but not a lot.

The big blue tube is the same as a nasal canula which sends oxygen straight into the trachea. Ammon will probably not need to use the bi-pap machine any more because if he needs any additional help breathing it can be done directly through the trach. He is sooo much quieter and seems to be so much more comfortable.

Dr. Smith brought out another photo of the throat after the surgery was done and said there was no way Ammon would have been able to go home without this surgery because it was still so swollen. He didn't know how Ammon had done as well as he has done for the past few days. I guess we really didn't have an option after all.

Before we left for the surgery, Ammon began to re-think his decision to do this. He told us he was very nervous and was fighting the tears. Just before they wheeled him out of the room he stopped us and asked if we could have a prayer first. He asked me to say it and I did. One of the first things he wrote on a piece of paper when he was awake after the surgery was "Heavenly Father answered my prayers."

He is a faithful, strong young man. I reminded him about the picture the Hortons gave him showing Jesus standing beside the surgeons. I told him that Jesus would be right there by him. I had no doubt about that statement at all.

He has finally fallen to sleep - they are giving him a small dose of morphine but everybody is elated with how well he has responded and how good he sounds. We will be grateful for the small miracles that have come our way.

A Jazz Visit!

Ammon received some surprise visitors this afternoon. This is Morris Almond and Mark McKan from the Jazz. Mark is one of the coaches and Morris is a player. They presented Ammon with a small basketball with their signatures on it. Morris was excited to know that Ammon had a blog and that he would be on the blog. He said, "Maybe I'll get famous now." We all laughed. They were very nice, very big gentlemen.

One More Time

Here is Ammon, smiling and resting before getting a tracheostomy. This may be the last time you will see his throat without a tube so we decided to take this picture. Dr. Smith came by after Jim left and during the conversation, Ammon finally said, "I've made my decision. If this surgery helps me feel better and will let me sing, then we're gonna do it." We said, "You're the boss." So it is going to be done. Dr. Smith was being very careful not to sway me one way or another but I could sense that he felt a trach would be the safest thing for Ammon as a long-term solution. The only other option we had was to continue with steroid medications and we didn't feel like that would be a good idea long-term. Jim and I will have to go through some training to learn how to suction the trach and take proper care of it but they have reassured me that it is much easier to take care of than the ng tube we used to have to do. I'm not too afraid of learning this new procedure but it one more thing to add to the care and I'm sure we will feel a little overwhelmed at first. Ammon knows it's going to hurt for a few days but he seemed positive about doing this.

TUBE'S OUT!

This morning the doctors extubated Ammon. That is a good sign. They immediately put him on the bi-pap machine and will monitor him throughout the day. He isn't out of the woods yet, but we are hoping the stretching procedure has worked. If the doctors hear any kind of strider breathing, they will go ahead and do the tracheotomy but if he sounds clear, perhaps he will be able to come home as early as Thursday.
Apparently Ammon did a little victory dance with shoulders and arms as soon as the tube was taken out. Jess said he seems to be in good spirits today so we remain hopeful that all this mess will settle down. I don't have any more details than that at this point.

Burning the Rubber

Well, it looks like we will be burning the rubber again between home and PCMC. Jim just left for the hospital with Ammon. They had a scheduled sleep study tonight but I told them he couldn't bring Ammon home tomorrow unless they do something to fix the mess he's in. As soon as we drop off the steroids, the same problem comes again. About 3 a.m. this morning I woke to insistent alarms. I rushed into his bedroom and realized that he wasn't breathing -- you know, the apnea kind that happens when you stop before you take another big breath. I roused him and rolled him over on the opposite side and he gasped and started breathing again. I asked him if he was ok and he gave me a thumbs up sign. So I went back to bed and we all went back to sleep. We have had several very good nights with the alarms only going off a few times. Last night was different. This morning when he woke up, he was panicking (sp?) because he couldn't breathe well enough. I quickly fixed his dose of steroids and got those going. The morning was awful but as the day wore on, he settled down and sounded a little better. Tomorrow he is scheduled to go on an even lower dose of steroids. We know that won't work.
So.....Jim called Dr. Valdez at home this morning and we talked to him. He thought that Jim would be able to have the sleep study people get a doctor to admit Ammon tomorrow morning. I don't know if he can get that pulled off but I told Jim he absolutely could not bring Ammon home until the ENTs do something to give Ammon some relief.
We have three options: a procedure that will stretch the opening that is being blocked and we opt for that one first; laser surgery to remove the granulation but that is scar tissue on top of scar tissue and there is no guarantee that this procedure will work any better than what's already going on; last and least favorable option is to get a tracheotomy. Those are nasty things but that may be where we end up. It isn't a permanent thing so there is hope that things could settle down and all could be normal once more.
Ammon was absolutely adamant that he have no more surgeries until this morning when he couldn't breathe. He said, "I don't want surgery, but it if it will help me feel better, then we had better get it done."
Just before he left, we had a neighbor come over and assist Jim in giving Ammon a blessing. Ammon said, "I will not go up there until I get a blessing and that's final!" So he asked simply that he wouldn't be afraid. That's all he wanted to hear in the blessing - one of comfort. That's what he got.
He hates the sleep studies. He said, "I was so embarrased the last time I had one and they put the net on my head!" He hates having the probes taken off, too, because it pulls his hair. I cut his hair quite short today so it wouldn't be so hard to get the probes off.
We'll update as we know more and see how things go.

Movie review

I watched a show on Nick called Merry Christmas, Drake and Josh. It's a great movie. Also there's three more movies in theaters called Bolt, HSM3, Cars2 and Bedtime Stories and maybe someone could take me to it.
Mrs. Gebert came and gave me some homework to do. She's really nice. So bye .