Answered Prayers

Today Ammon went to an ENT to have an endoscopy - that's when the doctor puts a tube down through the nose into the vocal cord area. The tube has a tiny camera so they can take a look to see what's going on. The good vocal cord was damaged a little because it is still red and enflamed, but it is working just fine!! That is the best news we've had in a long time!
Ammon will begin to do more and more of his own entries, but I wanted to do this one because so many people have been wondering how this turned out today.
We went to Henry's 3rd birthday party last night and when Ammon first saw me, he began to cry. He was so nervous for this test that all he could think about was being suctioned. We tried to calm him down and tried to ignore him the best we could-- after all, it was Henry's celebration. Ammon kept trying to get himself under control but would end up crying again. As we were all getting ready to leave, Ammon said, "Hey everybody, if you would give me a blessing it will really help me out." So the boys gave him a blessing with Dad standing in, too. On the way home, Ammon said, "I can't wait to tell my friends how I conquered my fears!" Well, he conquered them and all is well.
Many family members and friends had joined in a fast for him on Sunday (since it was our fast Sunday). Ammon fasted himself for the very first time because he knew this was important. His voice was extremely quiet on Sunday morning. By Sunday night, Kaitlin and I both noticed that it was much louder and clearer. I knew then that the Lord had definitely answered all our prayers. By Monday his voice was even better. In fact, I tried to convince Jim not to even go through with the test at all but he felt it would be good to know for future reference if further surgeries would be required. I was completely at peace by Monday.
Our pediatrician, Dr. Valdez, called tonight to check up on Ammon and to see how the test went. As an answer, I gave Ammon the phone and he sang "Happy Birthday" all the way through for Dr. Valdez since it is his birthday today. He said that was a great birthday present and laughed all the way through because he was so pleased.
Ammon still has to do a breathing treatment once a day with a drug called Pulmicort but that's all he needs to do -- time will do the rest.
Here is a photo of him having the treatment tonight.
Life is definitely on the upswing for Ammon. He is getting stronger and stronger. Now, hopefully, we can re-focus on other things in our lives - like David & Tana's wedding, family coming to visit, Jim's upcoming oral surgery, etc.
I just felt like I needed to make this post to give credit where it is due -- the Lord caused a miracle this week just like He does in so many other ways in our daily lives. He lives - He knows who we are, where we are and what we need. I don't know that I've ever felt more gratitude for that knowledge than I do tonight.

A Ghost of a Voice

Ammon has been home three weeks yesterday. He seems to be getting stronger every day except for his voice. After they took the breathing tube out the last time, he couldn't talk at all, which is normal. The following day he could barely whisper. Each day it got a little better until finally he could be heard. But his voice is only about half as loud as it once was. The anesthesiologist told us that he had a very difficult time getting the breathing tube inserted and we noticed that they had put signs up in the PICU around his bed saying, "Difficult Airway." None of the other anesthesiologists had seemed to have difficulty so we were concerned right at the beginning. We have never had those signs posted in previous surgeries, either.
Once Ammon had been home for about 10 days, we decided to take him to our pediatrician, Dr. Valdez, to see if he would examine Ammon's throat to see if it was sore or swollen. He said the throat looked fine but he was very concerned with the loss of the voice to the extent Ammon's was gone. We did a cortizone treatment on him (medication) for 5 days and then started a breathing treatment using Pulimcort. We checked in with Dr. Valdez three times within about a 10 day period of time. He isn't satisfied with the voice, feeling like we saw a little progress but not enough.
So we now have to take Ammon to an ENT doctor for an endoscopy, which is taking a minute little camera down through his nose into the throat to see if the one good vocal cord has been damaged. As long as the vocal cord is working, then time will probably heal the voice. If there has been damage and the vocal cord isn't working well, then we go back up to PCMC to meet with ENT doctors up there to determine if a traceotomy is necessary. I don't know all the purposes of the vocal cord other than to make noise, but Dr. Valdez said it is essential that one has to be working properly to protect Ammon's airways and that it would be a very serious situation if it wasn't. The endoscopy isn't painful at all, but it reminds Ammon too much of all the suctioning he had to have done down into his lungs so he isn't terribly happy about it.
As a family, we are going to fast for Ammon on Sept. 28 and Ammon wants to participate himself for the very first time.
Last night when I was explaining to Ammon what might have to happen, he was quiet for a minute and then looked up at me and said, "Well, if that is the way it has to be, then I will just be a quiet man!" He has been more accepting than I would ever be.
Anyone that wants to join in the fasting and praying in behalf of Ammon would be welcome.

My Football

I got this football signed by the BYU football team. It's cool! Everybody wants to have it but I won't let them. Mom got some friends at work to take it to the team and they signed it for me.

You can see Max Hall's and Harvey Unga's signatures on the front of the ball.

Mom also told me that I am going to be nominated to be a "Thursday's Heroes" which means that if I am chosen, I get to go to a BYU football practice on a Thursday, get to meet the team and Cosmo and do other things. I hope I get chosen because that would be fun!

Settling in at home

I've been home for a few days now. I can not go back to school yet because I have to wait until I'm all healed and my voice is still not clear yet. My voice is down to quiet quiet quiet. While I'm home all day, I play the computer, watch TV, watch movies that I haven't seen before in a long time, and hang out with Dad and Mom when she gets home from work.

I miss Andrea, Kathy, Rita, Ruth Ann and Cheyenne at Shriner's. But I'm still glad to be home. Jess and Jen came to visit today. I still haven't watched My Fair Lady yet, but I'll prove to Jess that I will. Jess taught me some songs from that movie while I was still at Shriners (Get Me to the Church on Time, The Rain in Spain Stays Mainly in the Plains).

Have a great day!

HOME SWEET HOME

Ammon already lip syncing and playing around with Gillian, comfortable in his own bed. Kaitlin saying hello to her long-lost brother.
Thumbs up for the great sign welcoming him home. Would you say his smile shows his joy?!

Gillian ran out as soon as she heard us drive up. They were both happy dudes!

Ammon began to kind of shake with excitement when we drove away from the hospital and kept asking me, "Is it much farther?" "Are we nearly there yet?" He was really excited to be coming home.

This past week, Ammon has been going to a few hours of school held at the hospital. He seemed to really enjoy what they did. As you can see, he still has to wear the neck collar but only for a few more days. He also is on oxygen for an undetermined amount of time. He will wear a body brace for a couple of months as his spine solidifies and then he will be able to go without a brace altogether.

We are home. We sleep in our own beds tonight. We will eat three meals together tomorrow. Life will return to some sense of normalcy.

We have been blessed to meet some truly remarkable people but those people will constitute a new blog entry tomorrow. Now it's time to go to bed.

LAST DAY AT SHRINERS!

Today, Sept. 12, 2008, we left Shriners for home. It was a very fun day before we left and we had a special treat. Dr. D'Astous and Dr. Santora told us they both played instruments and had even gone to Colorado to attend a music camp the first week after the halo had been put on. We still had not heard that little concert so we told the doctors making the rounds (neither of these doctors were in the rounds today due to some meetings with doctors from out of state) that we were very disappointed in these guys because we didn't get to hear them play. We were kidding, of course, but about two hours later, they both came up and asked for Ammon. They decided to play their little concert near the nurses station because there was more room. It was absolutely wonderful! They were both very good and Ammon had a smile as big as any smile any of us had ever seen. They had once jokingly suggested that Ammon play his Kazoo with them and so I went back to the room, got the Kazoo, and Ammon played along with them. It was the absolute highlight of the past 2 1/2 months! This is Dr. Santora - he assisted Dr. D'Astous on the first surgery and is one of the sweetest men on the face of the earth. He loves Ammon and has always been so gentle and sweet with him. He plays the mandolin.

This is Dr. Jacques D'Astous playing his violin. He, too, adores Ammon and he is Ammon's chief doctor. I just found out that he specializes in a particular issue with scoliosis and is one of the only ones in the world that does this. He had patients there from Austrailia and Canada this past week. He is just as sweet and kind as Dr. Santora. We couldn't have found an better doctors anywhere. He calls Ammon his "little man."

Here is Ammon playing his Kazoo with the doctors.

The concert is in full swing here. It was so much fun!

The nurse by Ammon was crying as she watched Ammon's face and saw what fun he was having.

Ammon spent part of his afternoon playing Sorry and other games with another little friend, Cheynne from Sheridan, WY. She has two more weeks to go. She is one of the most outgoing little girls I've ever met. She has to be there alone because her parents only come on the weekends. I'm quite sure she cried after we left. She is a wonderful young girl who is Ammon's age.

We can't believe how good we were in counting the paper chains. If we had come home tomorrow, we would have hit it perfectly!

Ammon and Cheyenne were watching Jungle Book together until it was time for us to leave.

Ammon is waving goodbye to Shriners.

Here is the sign the girls made waiting for Ammon! He kept saying, "Wow!"

This proves that we are home.

The End is Getting Closer

The paper chain is now down to 5. We have taken two off since this photo was taken. If we run out of the chain before we go home, Ammon won't be very happy. Fortunately, if we can get all the logistical stuff done in the next two or three days, we may be able to come home by the weekend. We're crossing our fingers!
A few days ago they got Ammon into a reclining wheelchair and we went for a walk around the hospital. It wore him out, but he was very happy to be out and about. The orthotists have made a light body brace for him to wear for stability while his spine is fusing and getting stronger. They have had to make some major modifications and so we still don't have the finished product yet. They are supposed to have it finished by Wednesday because the wheelchair people will then fit Ammon's wheelchairs to the shape of his body as it is now. We cannot go home until those two projects are completed.

May Harvey picked up this Japanese headband for Ammon when she was on a flight to Japan. He thinks it's pretty cool.

Ok, this is bathtime. Ammon told me to put this on - not specifically to see his bare chest, but to see how straight his rib cage is. This is totally amazing! Even his back looks so much better although they were not able to correct two things on it. You will notice how skinny he is. He has lost about 6-7 pounds since we came here so we are feeding him a little more and giving him a little more fluid. The shower cap is actually a bath cap - pretty cool. It has shampoo, conditioner and moisture in it so they don't have to rinse it. We just massaged his scalp and then took the cap off and dried his head off. Wish it was that easy for me!

It appears that we will have to take Ammon home with oxygen, but we are hoping that he will be able to be weaned off it once he sits up more and becomes more active. We will also probably have a home health nurse come in a couple of times a day to help out with Ammon because Jim will be uanble to able to lift or transfer Ammon for a considerable amount of time. I will be going back to work full-time once Ammon is home.

He won't be going to school for some time so his aides at school will come up once or twice a week to help him with some homework and we will fill in the gaps. He will then go to school for a half day until he is able to be strong enough to handle a full day. The doctors told us not to be in a hurry because it usually takes about 3 months before they are back in school.

One thing we have realized is that Ammon is really tough. He seems to hate narcotics and refuses to have any kind of pain medication unless we insist because we are moving him or working with him. Tylenol is the strongest pain medication he has had since he got back to Shriners.

I learned something interesting today: they never use Motrin for pain medication if bone healing is involved. It interfers with the body's natural healing for any kind of bone injury or bone surgery. So now I know not to use that with Ammon when he is home.

The end is definitely in sight! Ammon is really pushing the doctors and nurses to get him home by Friday or Saturday. I am working hard on him to accept what they say and go with the flow but it's getting harder and harder. We are homesick and bored out of our minds! Get us home!

A New Toy

The Child Life Specialist came in to Ammon's room Friday afternoon and gave him a new toy - a Kazoo. I smiled and thought it was nice for her to do that, but didn't really realize that it was a great toy! We taught Ammon how to use one and then he and I took turns playing it and guessing what song we were trying to play. The reason it is such a great toy for Ammon is that it helps clear out the junk in his throat. Since he can't cough very effectively, stuff seems to hang out in the bottom of his throat and he needs to clear it out one way or another. When he is rattling inside, he can't make very good sound in the Kazoo. It really helped him that night because the rattling was particularly bad on Friday night after they used the Cough Assist machine on him. He got mad at me because I kept getting after him to cough more. He finally broke down and began to cry saying that he was trying and just couldn't get it done. That's when I got the idea to give him the Kazoo. It calmed him down and finally became a fun activity.
This weekend has been a waiting game since he can't sit in a wheelchair without the physical therapists who transfer him in a particular way. I got his own wheelchairs up here on Friday but the wheelchair people wanted to wait until the body brace was done before sitting Ammon straight up while they make a new back for his chair. We hope that will be done on Monday so he can get up and be a little more mobile. He has been completely bored this weekend.
He will also have x-rays on Monday so it may turn out to be a busy day. Unfortunately, I have to go back to work on Monday and won't be here for all the fun. :)
Dr. D'Astous and Dr. Santora both play musical instruments and promised us they would perform for us. They will be in on Monday to play the fiddle and mandolin for Ammon. Dang! I will miss that, too. The last day we were in the PICU at PCMC, a respiratory therapist we had never worked with came in to give a last treatment to Ammon. The first thing he said was, "Your doctor is one that I know because I play in a group with him." Apparently there are a lot of people that get together in downtown SLC and play instruments. It is not an official organization - just people that love music. This man played the bass guitar for years (still does but not in this group). He plays the Irish flute. We talked about it a little while he was working on Ammon and then he left. About five minutes after he left, he came back in with his Irish flute and played a little Irish song for us - right there in the PICU! It was a classic moment!
I think Ammon will end up going home with oxygen. It may take a while to get him weaned off it. He does quite well in the day on 0.25 liters, but it really drops (to about 70) during the night when he is quiet and breathes lightly. We have it set to 0.5 liters right now and it dropped several times in the night. Once he is sitting up in his chair, however, that may change.
The doctors haven't given us a time frame to take Ammon home, but the earliest possible time will be next Friday or Saturday. We'll cross our fingers but I'm not banking on it. We'll just have to see how the week goes.

Recovering Nicely

Ammon is now settled in his room at Shriner's -- the same room he spent many weeks in already this summer. He was alone in his room last night and this morning so I went up there to hang out with him. I got there at 8:30am and he was already awake and engrossed in his Disney cartoons. I came bearing gifts -- an Etch-a-Sketch. He seemed excited to try something new that he'd never seen before. I had to explain to him that what he was looking at was what I called a computer back in the old days. Oh, how times have changed.

He was doing very well. His wounds from where the pins entered his skull (for halo attachment) are healing nicely. His voice is coming back, although he admits it's pretty raspy like a smoker. He got fitted for a brace mold today to be a temporary support for his torso for a brief time (Mom, fill in details if you need). These three guys came in and Ammon asked, "Are you guys the The Niceketeers?" They all laughed. Then Ammon said, "No, seriously?" They were friendly guys and had that mold in place in no time and no pain for Ammon.

Right before I left at noon, the physical therapy folks came in with a wheelchair to have him sit in for a few hours. His body needs to get used to the rods now, but it'll take a little time. Ammon was excited to get out of bed. He was most excited, though, when Mom showed up this morning after her one-night break from the hospital. They're shooting for Sept. 12th to take him home, +/- a day or so.

It's going to be quite the birthday party in Elk Ridge in October, right, Ammon?!

Goodbye PCMC, Hello Shriners, Part 2

The small window on the bottom right was Ammon's PICU room from Friday to Wednesday. We finally said goodbye to PCMC, hopefully for the last time. He left about 2:20 p.m. Sept. 3, 2008. Here is a photo of Shriners (blue dome building) taken from inside Ammon's PICU window at PCMC. I put this on to show how close the two hospitals are together.

Two new ambulance friends, Chris (left) and Jeremiah.

Still a little nervous about this ride.

Unloading at Shriners

Nice and comfy back in the same room and same bed at Shriners.

Ammon left PCMC without oxygen, but had to be put back on after we got here. He still has some rattling in his lungs and that may take a few more days to clear up but overall, he is doing great! He will have a neck collar tomorrow and a soft body brace (don't worry Mrs. Minson and Mrs. Gebert - it's only while he recovers). After that is done, he will be able to begin some sitting for short periods of time. We have no idea how long he will be here - maybe 5 days, maybe 2 weeks. It depends on how well he recovers. He is skinny, skinny, skinny! We will have to fatten him up. He is now on full, regular feeding so we hope we can add a little meat to his skinny frame.
Note the awesome "The Quest" BYU shirt. I promised I'd get him a BYU shirt and it would be the first thing that would fit over his head as a regular shirt that doesn't have to be buttoned up. It drowns him but he is a happy camper. His voice is beginning to come back finally. I can actually hear him without having to put my ear right up to his mouth.

Good progress! There is, indeed, a light at the end of the tunnel.

RED LETTER DAY!

The breathing tube was removed about 11: 00 a.m. this morning, Sept. 2, 2008. This is a red letter day for Ammon. The respiratory therapist will still have to work hard to suction him through his nose and throat (which Ammon hates) and give him treatments. The next few hours are critical that they get the junk that's in his lungs as clear as possible so they won't have to re-intubate him later. Now we keep our fingers crossed and pray a lot!
Here is a photo just minutes before they took the tube out. The tube is out now and he's trying to smile. I don't know for sure that he is really happy at this moment because he's tired and still pretty sick. He's looking good. We just hope that he is able to cough some on his own to help things out.