Sunday, August 31, 2008

Before and After

Sunday, Aug. 31, 2008
Here are some photos that show Ammon's progress with the swollen face. This one is today where he is waving to all of you. As you can see, he is still on the ventilator. They are taking it day by day because his lungs are producing an enormous amount of fluid. The doctor said today that it is not pneumonia, but they haven't dared take him off the breathing tube because he can't cough well enough to take care of the fluid well enough by himself. Each day we hope but we don't want them to have to do it too early and then have to re-intubate when he's awake. That would be pretty traumatic for him. He has seemed to accept the tube and the suctioning now. In fact, today he wanted his pen to write a note and he said, on the note, "I need to be suctioned really quick!" We're glad he is letting us know when he is in pain and what he needs. His blood pressure is much better today but the potasium levels have been problematic as well due to the diruetic they have given him to get rid of all the fluid inside his body.

Hopefully tomorrow will be the red-letter day when he will have turned the corner and will begin to really feel better. Look everybody -- NO HALO!!

Saturday - still swollen and eyes very puffy.

Friday night - we didn't even recognize this little boy.

The swollen body is due to the fact that he lost so much blood and so they kept fluid pumping through his body and he was tipped downward a little bit. It was really scary looking, but he is looking better every day.

Saturday, August 30, 2008

Slow Progress

Ammon is making slow progress. His face is still quite swollen, but it is slowly getting back to its normal size. His lungs are really struggling, however. A doctor told us today that Ammon essentially has one lung because the left one has been crunched in a small space for so long that at this point it isn't very effective and it is much smaller than the right lung. We were really hoping that he would have less trouble with his lungs with this surgery, but the nurse and respiratory therapist have to keep suctioning junk out of the lungs. He is pretty full and they are worried about pneumonia.
Ammon has stopped fighting the suctioning and is quite calm when they do it even though he really hates to have it done. We are realists at this point and know that the breathing tube isn't coming out any time soon. We will continue to hope and pray that it comes out by tomorrow, but we really don't know when he will turn the necessary corner to be free of the tubing.
I will post photos once his face is back to its normal size.

Friday, August 29, 2008

The Deed's Done

This says, "I hurt inside. I love Dad and Mom. I want to hug the nurses. I want to sleep here someday."
Written when he could hardly see and was in intense pain.

Well, the surgery is over. It was long -- about 7 hours and that was without doing the untethering. Two days ago, after talking to the neurosurgeon and in consultation with the orthopedic surgeons, we all decided that Ammon would probably not benefit a great deal by doing the untethering. Because of the long-term stretching, they felt that the spinal cord would be sufficiently lengthened that we probably didn't need to untether the end of the spinal cord. The untethering also could be an increased risk with infection by leaking spinal fluid. We felt comfortable and even relieved to come to this decision. Now I am soooo grateful that we made this decision. The surgery would have been several hours longer and Ammon's body just hasn't responded nearly as well as we hoped.

Please keep him in your prayers! He lost all his blood but it was not a crisis - the doctors were prepared circulating and re-using his blood and then added about a quart more. The anesthesiologist warned us that Ammon's face was bloated due to all the fluid they ran through his body and because he was tipped downward during the procedure. Being warned, however, still didn't prepare us for the sight that awaited for us. I broke down when I saw his swollen face and all the tubes attached to him. I felt like my heart would break and wondered how we could have ever agreed to put him through this pain again.

They had a very difficult time keeping his blood pressure up and for two hours, it was quite tense in his room. We had to leave the unit at 7:00 p.m. so Jim just called the hospital and they said he is resting better and the blood pressure seems to have settled down a bit. I think we can sleep a little better now. He was in a lot of pain when we were there and because he was still intubated and couldn't talk, they gave him some paper and a pen and asked him to write where he hurt. That's what the photo is all about. I think the serious pain at that time was due to gas from the anesthesia and so we're hoping he will look a little more normal and will be in less pain tomorrow morning. They hope to get the breathing tube out sometime tomorrow. They are having to suction his lungs again and that saddened us. He hates that and it makes us feel very sad for him.

Hopefully the news will be better in the morning.

The Big Day is Finally Here!

Well, the long awaited day has finally arrived. Ammon was understandably nervous. On Thursday night, he had nightmares all night long. He kept crying in his sleep and when I woke him, he told me he was scared to have surgery. We had a prayer right then and he finally fell into a more peaceful sleep. We asked Mark Ellett if he would be willing to come and assist Jim in giving Ammon a priesthood blessing to give him a little more comfort. He was good enough to come up. Once again, Ammon was very emotional in the prayer, causing the rest of us to be quite emotional. He feels the spirit very closely and felt his dad's love very strongly in the prayer. This picture is one taken last weekend when Marci and Mark Ellett come up to visit (and bring yummy, homemade food. Ammon's surgery was scheduled for 7:30 a.m. - one of the very first. That meant that we had to leave Shriner's at 5:45 a.m. because he had to check in to Same Day Surgery by 6:00 a.m. Jim had come up the night before and we stayed in the main Ronald McDonald House so we didn't have to get up at 3:00 a.m. this time. Jim took the car over to PCMC and I rode in the bus with Ammon. Here is loading up once again.
Ammon and his bus driver, Gwedolyn (not sure of the spelling, but that's how her name is pronounced).

This is Dr. Holly. He is the anesthesiologist this time around. He is quite young but was very calm and great with Ammon. You can see the nervous look on Ammon's face in this photo.

This is a nurse named Shanni. She has been his nurse several times at Shriners. She works at both hospitals. When she is at PCMC, she works in the OR. She got to help out with Ammon's care. That helped relax him a bit.

Saying goodbye at the door. Ammon following Dr. Holly to the surgery room. This is the part we don't like. Ammon made sure we had a prayer together before he left.

More updates as they come will follow. The next update willl show Ammon without his halo for the first time in 5 weeks!

Field Trip

Getting back from the field trip.Getting on the bus - wish is was going to Hollywood Video!

Ammon got to take a field trip on Thursday (28th of Aug.). He got to ride in Shriner's bus to go over to PCMC for bloodwork. It wasn't the kind of field trip he was wanting, but at least he got out of the hospital. He asked the bus driver if she knew where there was a Hollywood Video. She knew but said she had to have a doctor's permission note to take him there. Darn!

PCMC was a madhouse! They were doing a child abduction drill. You could get in to the hospital but couldn't get out. They were stopping all cars leaving, opening trunks and searching inside before allowing them to leave. It was interesting to watch.

After the bloodwork, we headed back to the hospital to pack things up and get ready for the big day!

Sunday, August 24, 2008

Last Weekend at Shriners!

On Friday, Ammon's former school aide, Annette Darling, came up to visit. These two are quite the pair - silly kids! He was delighted to see her.
Friends & neighbors came to visit after attending Shayla Salcido's wedding on Saturday. Left to Right: Steve Linford, Marci Durrant, Jennifer & Scott Sessions and Melanie Linford. Ammon all gussied up for a nice Sunday, Aug. 24, 2008
Andrew, Ammon and Jeremy - meeting up again at Shriners.

This is Ammon's last weekend at Shriners. The paper chain is getting smaller and smaller and we can now see the light at the end of the tunnel. Ammon wanted to dress up in Sunday clothes today so I brought some of his dress clothes up and after his shower, we got him all "gussied" up. He was very cold after his shower (takes him about an hour to get warmed up for some reason), so I suggested that we go for a walk outside where it is nice and hot. He was happy to do that and was even happier when he discovered a couple of friends. As we were walking down the driveway going to the back of the hospital to the playground, we saw an ambulance come up. I told him that maybe it had another "halo" kid in it but didn't know if it had even come from Primary Children's. By the time we got to the playground, there was no one around by the ambulance. Ammon went to the playground and played there for a little while until I was too hot to stay there. As we came back to go into his room, we saw the paramedics getting the ambulance loaded back up and Ammon shrieked (literally), "Andrew!" The paramedic exclaimed, "How ya doin' Ammon?!" (How did they both remember each other's names??!!) So the guys came around and talked to Ammon for a few minutes like they were old friends. Andrew and Jeremy were there - two of the three that had moved Ammon over here when he had the transfer. It was kind of funny, actually. How in the world does Ammon remember everybody's (!) names after only meeting them once (a month ago or longer) but can't remember a story after he's heard it a gazillion times?! It's so strange. He had an incredible memory in some areas and really struggles in others. Ammon said, as the men left, "This is one of the best days of my life!" He probably meant every word of it, too.

Sunday, August 17, 2008

Weight Reduction

We had to reduce the weights by two pounds. Ammon hasn't been tolerating them very well and the pin sites became excruiatingly painful to touch, which isn't normal. A nurse found a doctor today and talked to him. They decided to back down to 18 pounds again so we are back to that weight. Surprisingly, Ammon perked up quickly once the two pounds had been removed. He even wanted to go on a walk so we left the hospital grounds and went on a long walk. At one point, as we were coming down a hill, Ammon had to stop. He said he had "chair sickness." It was obvious that he wasn't feeling well and was really bothered by the extra weight for the past three days. We were having to give him pain medication for the first time and he was hating life. He seems to have found that little spark once again. Hopefully they will be content to leave him at 18 pounds. I guess we'll have to see.


I think the story of my birth is neat. Mom had me at the hospital in Provo. She didn't get to hold me at all. Three hours after I was born, she got to touch my cheek and talk to me when I was in an incubator. Right after that I was taken to PCMC by ambulance and that afternoon I had surgery to close up the sac above my bottom. Dad, Jess & Chelsey went up to the hospital to be with me but Mom had to stay in Provo for four days. She was sad.
After four days she came up to hold me and take care of me. She brought Kaitlin with her. I got to go home about 10 days after I was born.
Mom says she is glad I was born. So am I.

Friday, August 15, 2008

Last of the Weights

Ammon put his entry on a while ago but I thought I'd put a couple more pictures now that he is in bed for the first time since 9 a.m. this morning. The physical therapists put the last of the weights on Ammon today. They will not increase the amount any more. He has 20 pounds attached now.

As you can see from the photos, he is now having to lie at a very steep angle in order for the correct pressure to remain on his body. He is literally hanging. He loved having the freedom with his hands until they put 19 pounds on yesterday and then it wasn't so much fun anymore. He keeps saying his neck hurts so we will keep close watch on him through the weekend and then talk to the doctor on Monday if he is still uncomfortable. For the first time since he got to Shriner's, he got some Motrin to help take off the edge. He isn't as happy-go-lucky now as he has been in the past weeks. Part of that has to do with him wanting to go home (every other sentence) and the other part is that he is trying not to be too bored. He hasn't been very interested in much of anything today, including playing games with me.

He started talking about what he was going to do when he got home. He said the very first thing he was going to do when he got the halo off was hug his whole family!

I had a pretty lengthy conversation with one of the doctors here today and we talked a lot more about the upcoming surgery. It is lengthy and tough but they have done so many of these that hopefully it will go well. One thing we have to worry about is infection that sometimes occurs along the rods and it is especially risky when they have to untether the spinal cord, which is the plan right now. Today I feel worried - maybe I'm just tired like Ammon is. On days like today I have to remember to draw on the major source of peace where I can put this burden in His hands. I'm so grateful to know about the plan of salvation and that I know where I can turn to find that peace that I need so much right now.

I wish Ammon was still his little cheerful self. He is trying hard to smile today.

20 Pounds

Today physical therapists put the last pound on my weights. I now have 20 pounds hanging on my head. Today it hurts just a little bit but not too bad. Because I was being pulled up to the top of my bed, PT put my bed on what they call blocks. That is so I won't slide up to the top and will have the right pressure on my body.
I haven't been in bed yet today. I like being in my wheelchair. Mom says after I get done with the computer I have to go to bed.
Here are some pictures we took today.

Thursday, August 14, 2008

Gillian's Visit at the Hospital

First we played Disney Scene It was a lot of fun.
Then we watched National Treasure 2 - we didn't watch the whole thing. It was too long before bedtime. I was glad she came up and spent the night with me.
I am doing this entry, Mom isn't.
And now I have 19 pounds on my head. It feels ok.

Sunday, August 10, 2008

Recreation at Shriner's

My turn, Dad! Jess & Lauren having fun on a wheelchair accessible playground behind the hospital.
Jess & Jen brought their girls up to play and visit Ammon on Saturday night. We took them out to the playground and they all had a really great time. Here is (right to left) Lauren, Leah & Abby.

Even Jen got in the action as Leah twirls her around!

Trisha was also up here. She brought some movies and goodies and we had a movie afternoon, watching "Nim's Island," which is great fun!

We discovered that Abby is an absolute monkey!
Jess & Ammon playing on the chimes - it's addictive, believe me! It sounds soothing and great and Ammon will play them for a long time.We go outside several times a day to break the monotony. I love to play these things myself! There is a little part in the playground where there is an ambulance - it is built into a wall and on one side it's painted to look like an ambulance. On the other side is a steering wheel. Ammon found it and had a great time pretending to be an ambulance driver (without the sirens, of course) and he took each one of us to a different hospital with different wounds. Who knew he could pretend so well???! He can reach things and has free hands for a change so he can play, pretend and participate more fully. He doesn't seem to mind "hanging" by his head at all.

There are drums and he can even reach these to play. I want a playground like this in my yard!!

Keri & Devin Minson came up early Saturday and stayed for a couple of hours. They played in the large activity room and then we set up Play Station where the boys played a game of basketball. (SUU whipped BYU in this game!)

Look at the concentration on Dev's face as he is trying to beat his mom in ping pong. Mom won so I guess it's "Girls rule, Boys drool!"

Devin, Ammon & Keri

Tuesday, August 5, 2008

How to Pass the Time Away

Ammon is holding a great pillowcase that Mrs. Gordon made for him representing the kids in his "Remembering School." He was so happy to see Mrs. Gordon and her daughter, Annie.
Lance & Nancy playing a mean game of ping pong. Ammon caught a couple in his face but didn't mind at all -- he thought it was pretty funny.

The Horton Family -- these are the guys that made that wonderful quilt!

More Hortons!
This is where Ammon loves to go to play on his computer. The hospital set up an area where he can hook his computer up, set it up on a desk and go to town. He doesn't want me to stay with him so I leave him to his own devices. He can't seem to find his way back to his room when he's on his own, however, so we have to keep telling him to look at the signs (exit, patient rooms, etc.) in order for him to find his way. He gets lost at his own school sometimes, too. This hospital is confusing even for me because so much of it is built around circles and if you don't get off on the right "exit" you just keep going around and around.

Monday, August 4, 2008

Out & About

Life at Shriner's is beginning to take on a routine and Ammon usually does better with a routine than without one. I (his mother) find it extremely boring except for the part of being with Ammon and hearing his funny exchanges with everyone around him. He has charmed the entire staff. He remembers all their names and loves to talk to them.
He can get on the computer where he can actually type and look on the blog in a different area in the hospital. They set up an internet line just for him. It's over by the physical therapy room. Once I get him going, he excuses me and tells me to basically get lost. He played on the computer for about 2 hours today before I made him get off and go back to his room. We had internet access in his room, but because of the angle of his bed, even with a cool computer stand we have, he still can't type when he is in bed. We are always trying new ways and things for him to do, but he does love to sit in the wheelchair they have rigged up for him. We took a walk outside yesterday and tomorrow he will go outside to a really neat wheelchair accessible playground.
The staff wants Ammon to be up in the wheelchair as much as he can tolerate so he spends about four or five hours sitting in the chair. He now has eleven pounds attached to the halo - final goal is 20 lbs if he can tolerate it.
He goes into the play room during activity time - we made a bracelet for him and he went in again today after I left.
He always loves to have people come and visit. On Sunday the Horton family came to visit, then Lance & Nancy came and we had a lot of fun with them. After they left, Trisha Cole came. It was a fun evening.
Today Mrs. Gordon (one of his teachers) and her daughter, Annie, came to visit. He loved seeing both of them.
Again - thanks to everyone that comes to see Ammon. It breaks up the day and gives him a reason to be even happier.
I'd put photos on, but there is an internal problem with the blog today. The photos will come another day.

Friday, August 1, 2008

Ammon Anecdotes

Last night was Ammon's first night at the hospital alone. Mom had been up there about a week; then Dad came up and gave it three nights in the room with Ammon (with no bed, mind you). Both needed breaks and had other obligations back at home to deal with (like Mom's Women's Football Clinic).

So I got up early this morning and got to the hospital at 7am to hopefully be there when he woke up. Well, I woke him up when I walked in his room, but he quickly went back to sleep. Finally, at 8:30am, the nurses came in and woke him up. He slept well and claimed it was nice not hearing any snoring all night! I was there until 11am and Mom had arrived and will stay through Monday afternoon (they have no WiFi access in Shriner's so she won't be blogging every day -- hence my post).

Ammon was fun this morning and continues to flirt with his nurses. One of his nurse's aides this morning was probably 25-28 yrs. old but after she left, he asked how old he needed to be to get married. I said, "You probably ought to be at least 21 years old." He replied, " about dating?" "Well," I said, "you need to be 16. That's still over 3 years away." "Drats," he said. Of course, this nurse's aide was already married, but that didn't seem to faze him.

On his first day at Shriner's, he met his Child Life / Recreation specialists (I guess they're the folks who entertain the kids all day). They were two young ladies, again probably between 25-28 years old. After they met and chatted for a bit, they left. Ammon looked at me, rolled his eyes, and said, "Why do I keep flirting with the ladies?"

Definitely a ladies man.

One other anecdote: There's a breathing machine he uses a few times a day to encourage deep breaths to keep his lungs clear (and therefore ward off pneumonia). I guess Ammon recoginzes the importance of this and has no problem using it. During his treatment today, he told the nurse, "I'm either going to check this machine out, steal it from the hospital, or go on to eBay and buy one so I can have one at home."

I'm not even sure he's ever been on eBay before...


Ammon is always attached to weights to continously stretch his body. It doesn't cause him any pain, as freakish as it seems. He is now up to 10 lbs. He will have 40% of his body weight attached to his head by the time he is done - about 20 lbs.

Ammon is just "hanging" out at Shriners now. We are working into a routine of some kind. Dad stayed with Ammon for three days and now I am up here until Monday and learning how they do things at this place. He is now supposed to be sitting in a wheelchair several hours a day. I didn't know how long or how often so tomorrow we will get him set up at least twice, maybe three times for a few hours.
Shriner's has worked out a little station for Ammon to play on his computer. The hospital doesn't have internet access for patients so they have worked out something for Ammon where he can go in his chair and sit at a little desk and have access to the internet.
Our awesome neighbors, May and Jim Harvey, spent most of the day up here working out a way for us to get wireless internet here in Ammon's room via a cell phone. It works well and that is why we are able to post this. Ammon can read with it, but he can't type because of the position of his head when he is in bed. So now we have the best to two worlds - something for him to do when he is in his chair and something for him to read when he is in bed.