i love lance and john

I like Lance and John they're coming up here for the Christmas party after church. That will be fun. I haven't seen them since I started school. bye.

A Busy Week

When you sit in the same room at Shriner's for 3 1/2 hours, you get bored - photo above is the ceiling of the wheelchair room at the hospital. Shriner's has cool architecture.

Drinking his chocolate at the Garden Restaurant.

When Ammon saw the flag, he turned around and saluted it. Cute.

Last week was very busy for Ammon. As you all know, he was able to go to the Festival of Trees and was interviewed by KSL Channel 5. After that event, we took Gillian out to breakfast for her 21st birthday. Ammon drank chocolate milk and had a few bites of pancake (which he claims to like). We took Devin Minson, one of Ammon's friends, with us so he could participate in being a "star." After the breakfast we went over to Jen's house and hung out there for a couple of hours. Devin, Ammon and Kaitlin played some Wii games and had fun. We had an appointment at Shriners at 3:00 p.m. to have Ammon's wheelchair seat adjusted so we didn't want to make two trips up to SLC.

I had a free gift card that we used for lunch. Jim and I took Ammon up to the Garden Restaurant at the top of the Joseph Smith Memorial Building for lunch. He had chocolate milk again. We were able to get some good photos.

He sits up 100% better in the new seat he got at Shriner's. I wish he had had it done before his KSL interview but that's ok. All in all, Ammon had a fantastic week!!

The Fireside

The fireside was great - the best day of my life. It had lots of people there. It was great! bye

Update on the Fireside

Just a quick update on the fireside next Sunday night. It should be a great evening. I have been asked to talk about Ammon and tell what has happened to him in his lifetime (it will have to be a very quick re-cap) so people will understand why he like he is and so they can see what challenges he has and how they can help him and others with disabilities. Matt Bauman will also speak. He is a middle linebacker for the BYU football team. He is a member of Gillian's bishopric. I got to meet him today and was very impressed with him. There will be a couple of surprises for Ammon that night. Brother Merrill, a member of our bishopric will conclude the meeting. Primary children will be singing "I'll Walk with You" and we will have lots and lots of goodies to eat - a lot of chocolate.

This is an open fireside for anyone that would like to attend. It will be held in our chapel. The tree they are taking up for the Festival of Trees will be on display as will the fantastic quilt they have made and that the BYU Football team has signed (all 140 players and coaches). This has truly been a ward event with so many people involved it's mind boggling. We invite all to come for a fun evening.

Trach-Out Party is On!

We have decided to combine Ammon's Trach-Out Party with a fireside Elk Ridge 2nd ward is having on Nov. 29, 2009 at 6:30 in honor of Ammon. The YW decided that they needed to cheer up Ammon when he was in the hospital so they made a plan to decorate a tree in Ammon's honor for the Festival of Trees. They are decorating it in blue and white because Ammon loves BYU. So the tree will be a BYU tree. The whole ward decided to get in the action. A fabulous (!) quilt has been made with a BYU theme. The football team is going to sign squares on the quilt and then the quilt will go with the tree. I was so excited when I saw the quilt last night. Everybody in the ward has had a hand with this project.

They will "unveil" the tree on the 29th at a fireside held at the church (in the chapel). They have asked me to speak and talk about Ammon. I'm still trying to figure out how to do it but talk about disabilties in general and how we can all help those who have disabilities. Apparently Matt Bauman, from the football team, has volunteered to speak as well. He will bring whatever teammates he can dredge up. After the fireside we will have treats - chocolate.

If any of you that plan to come could bring something with chocolate in it to help with the treats, I would love it! We will serve the Hershey candy, I will make Black Bottoms and will maybe get another cake from Costco. That's still all to be determined. I hope those that live nearby will be able to come. This is an exciting project and we're excited for Ammon to be part of this.

starting school again

monday I start school again friday i came just so dad could teach my teacher how to feed and cath me I love my teachers bye

HALLOWEEN SPOOK

Which face is spookier? This one or....... This one?

Ammon fell out of his wheelchair last week and face planted it in the middle of the street. Ouch... It's nearly healed right now, but we've had Halloween here for over a week. Spooky.

New Teacher in Town

Today I was ordained a teacher by Dad. It was fun and I got to be sustained. Is that cool or what! Yeah so bye.

Pic Line is Gone!

This is not for weak stomachs or the weak hearted!

Ammon got his stitches out today and got the pic line removed! He was very emotional during the ordeal because he was afraid of the tape pulling the hair on his arm and didn't like to have the sensation of the stitches coming out of his head. He was brave in the end, but he was sure afraid to do this before Dr. Valdez got started.

Dr. Valdez was very gentle and explained everything he was doing. When Ammon would cringe, Dr. Valdez would back off and give Ammon a minute to breathe a little easier. When it was done Ammon was so happy as he realized the pic line was gone that he grabbed Dr. Valdez and gave him a big hug and said, "I love you, Dr. Valdez!"

Orange hair will have to remain until Sunday when he will finally get a good soapy shower.

Pic line is gone!! Tape is gone. I put a little dressing over the area just for tonight to make sure the site remains clean.

Ammon has been very tired acting today. You can see it in his eyes tonight. He is now in bed - he doesn't have to wait for the long IV injections to be complete by 11 p.m.

Dr. Valdez doesn't want Ammon to go back to school until after he has had the H1N1 vaccination but his office doesn't even get the stuff until the middle of November which means Ammon probably won't be able to go back to school until after Thanksgiving. Two half years missed! Wow. That's a big chunk out of his life just trying to recover and be well. At least he's on the mend.

The Wizard of Oz Movie

The Wizard of Oz is the greatest movie! It's funny and it's got lots of special features and it's spectacular. I love it. It's the greatest movie ever.

Joke of the day - What is it that goes 99-plank? A centipede with a wooden leg.

FINALLY HOME!!

Ammon came home last night about 5:00 p.m. We are so excited to have him back home!
Nurses came up late last night to show Jim and I how to administer the IV antibiotics through his pic line. It's not difficult to do but we do have to be really careful. I don't think he will be going to school until the antibiotic is complete on the 23rd of this month. He will have to have stitches removed as well so we'll keep him home and keep him as healthy as possible before he tackles the sick world out there.

Our friend, Keri Minson and her sister-in-law, Michelle, went to visit Ammon yesterday. Keri is letting her blonde hair go back to it's natural color which is darker than we've seen it. Ammon wasn't sure he liked it so dark and kept commenting about it. Keri then said, "Well, at least it isn't orange like yours." Ammon didn't know exactly why she said that. His head is really orange from the iodine they covered it with during surgery - and we can't wash it out for a while. Keri and I laughed about Ammon's concern so I had Ammon go into his bathroom and look in the mirror so he could see why his hair is orange - there is also a large shaved area on the top right of his scalp with a long line of stitches in it and stitches behind his ear. I wasn't sure how Ammon would respond. He sat in front of the mirror and looked at it and then said, "That's awesome! I look like a pumpkin!" I laughed and said, "I was thinking more like Frankenstein for Halloween."
I forgot that orange is his favorite color.

On a sadder note, Kaitlin has been sick for a few days with a cold. She finally went to school yesterday after feeling a lot better. She went to dance after school and I guess she just pushed her body over the edge because she couldn't breathe at the end of dance. We sent her down to the doctor and he called me at home after he saw her saying, "She has pneumonia. Do you still have your nebulizer? Get her going tonight." She sounds awful - she crashed very quickly. So she is banned from Ammon's room and he is banned from the living room where we have her so we can hear her if she needs help. I sure hope she gets well soon! There's a lot of sickness in our ward and at her school.

All In Favor Say Eye

All in favor of letting Ammon have surgery tomorrow to insert his new shunt say "Eye." Actually, his left eye is nearly normal this morning. We were pretty excited to see him back to normal. The neurosurgeons came in this morning and said that the problem was what they suspected - too much CSF in the ventricles because they weren't draining it quickly enough. Now they know a little better the size of the shunt they need to use when the put in a new one. So, surgery is still on schedule for tomorrow morning. If things go well, he could possibly come home by Wednesday. He is sooo excited to get that drain out of his head because it pulls on his hair. Being able to get into his wheelchair was a big step for him. He has played on the computer, watched a DVD, gone for a walk and generally is happier in his chair than in the bed. I don't blame him one little bit.

Because I couldn't take him to church with me, we had some Elders from a U of U branch come up here. They blessed and passed the sacrament to Ammon and, because they found out Ammon is still a deacon, they let him pass the sacrament to me. Two young women from the branch came and gave him a lesson about forgiveness. The teacher asked him if he ever found it difficult to forgive somebody. Ammon thought for a minute and then shook his head. He said something quite profound. He said, "No, I can just let it go. I leave it up to them to work it out." I learned a lot right then. I don't think Ammon has ever had reason to forgive someone and I don't think anyone has ever had reason to forgive him. What a legacy to leave in this world.

It has been a nice, hopeful day filled with the Spirit of peace.

Update on Weird Eyes

Ammon wanted to say hi to everybody. In the top photo you don't notice the problem with the eyes too greatly, but in the bottom photo, you can see that his left eye doesn't move beyond mid-line when he's trying to look to the right.

We haven't heard anything official about the MRI yet but the neurosurgeon fellow came in and said it looks like the syrnix (top of brain stem, I think) is inflammed possibly caused by too much cerebral spinal in the ventricles of the brain. Dr. Reva-Cambra, the neurosurgeon that is scheduled to do the surgery on Monday morning has been in to see Ammon. The neurologists also came in and did an assessment of Ammon. They are only surmising at this point until the radiologist has the report finished. The doctors decided that they probably weren't draining enough fluid from the ventricles and so he thinks that is creating pressure on this area of Ammon's optic nerves. They are now draining out a lot more to see if this alleviates some of the pressure.

Ammon has had a much better day today. He has been able to sit in his wheelchair for a couple of hours. We have played games, watched a movie, looked at books, visited with his school teacher, Wendy Stoker and with Marci Ellett as well. They have both cheered him up immensely. He will get back in his wheelchair in an hour or so. He loves (!) being in that chair. It's good mental therapy.

I was just told that PCMC has implemented a new rule starting on Monday. No child under the age of 14 is allowed in the hospital (except the patients, of course). They are trying to keep the kids safe from germs here and keep the patients safe from germs brought in by little ones. They are also only allowing two visitors at a time in the rooms. Good thing we did the birthday party when we did! This has already been implemented at UVRMC. I can't imagine this place without thousands of little siblings roaming all over.

Into the Woods

Ammon is still in the woods - pretty deeply at the moment. I hadn't seen him since Monday night, much to my sadness. Jim has been staying with Ammon all week except one night. It's my turn now during the weekend. Jim called me this morning after he got home (he had a doctor's appointment and had to come home for that) and said that he was very concerned because Ammon was sleeping a lot and it seemed like he was literally depressed. I figured my job this weekend would be to make Ammon happy. When I got here, however, I was scared out of my wits because Ammon's left eye won't track with the right eye. His smile is lopsided as well. It doesn't look like a stroke, but there's something definitely not normal or right. I talked to the nurse and she got the Neurosurgeon to look at Ammon. They took him down for a CT scan looking for a possible abscess or infection in the brain. The CT scan didn't show anything alarming so they will do an MRI tomorrow morning, looking for possible deposits of blood around the area that controls the eyes. Ammon is very tired all the time and is very lethargic. This comes at a bad time - he was scheduled for surgery Monday morning to re-insert the shunt. It might still happen, but we're not sure now.

We will have to wait for tomorrow to see if any new developments have arisen.

WOW!

Wow! What an outpouring of love and care came Ammon's way on his birthday! Thank you to everybody that participated. Ammon has read all the comments but once he is up and able to get to his own computer, he will read and re-read these comments. It will be a highlight of his day every time he reads them. We would have him do his own posts, but it's kind of difficult right now because he has to be lying down due to the EVD in his head most of the time.

Our entire family was deeply touched by this experience! I will post a few pictures tonight of the happenings of his birthday. We were few in number at the party (one family in the hospital having a new baby and two others keeping their little ones home either due to colds or the fear of colds, which is smart), but we had a good time anyway. Ammon received a lot of nice gifts but I think he liked the visits as much as anything. He loves people and loves visits and phone calls.

It was great to be able to serve cake to all the nurses on the floor and to other doctors and visitors that came along. It was a very nice celebration.

Ammon became a new uncle for the 21st time last night in the middle of the party. His new niece is named Grace Carol Clark. They will be able to celebrate their birthdays together forever. It was a great way to end a great day.

Thanks again, everyone! You made our day.

HAPPY 14TH BIRTHDAY

I am posting this just a few hours before Ammon turns 14. By the time he reads this tomorrow it will be his birthday. We are celebrating with a little party in his hospital room, 2031 about 7:00 p.m. tomorrow night. Everybody is invited! He is VERY excited to see everybody and to get his presents (the greedy little dude!).

We are sure glad you came to our family, Ammon. You have shown us courage, love, kindness, and infinite goodness. You have a most tender spirit and that softens all of us. We are all better people because of you. We love you!

HAPPY BIRTHDAY.

Back in My Room & Feeling Good

Morphine makes Ammon feel pretty good -- :) Actually, Ammon doesn't like pain meds and won't ever ask for any but because his heart rate is a little up, they are giving him a light dose of morphine to help him out. He slept in the ICU (cool, quiet room all by himself last night) and I slept in his regular room. I went back in to see him this morning at 6:00 a.m. and he was bright-eyed and busy-tailed. He was happy and talking up a storm. He was relieved and seemed to feel pretty good. He talked non-stop until I had to leave the PICU at 7:00 a.m. He has now been moved back into his regular room. All the doctors have been in to see him this morning and are very pleased and relieved that he did so well with the surgery.

Ammon is now asleep, relaxed and on his way to recovery. There have never been any "bugs" in his head where the shunt was so we may be able to get a new shunt within a couple of weeks. Only time with antibiotics will tell. It will take a while to get all the infection cleared up but we all feel very optimistic. And Ammon is super excited to have his birthday in a regular room.

SUCCESS!

The surgery was finished about 10:30 p.m. and it was what they suspected: a hole in the bladder at the bottom back part where the augmented tissue had been added several years ago. The mass of stuff they could see ended up being all the mucus mess that had come out of the bladder and so it was so thick it wouldn't drain. Dr. Cartwright said Ammon did exceptionally well but they will still put him in the PICU overnight just to make sure he does well. I don't think they will extubate him tonight, either, so that will upset Ammon. However, things have been cleaned out and now he can really heal. He has a couple of tubes hanging out of his abdominal wall, the EVD hanging out of his head, a pic line, an art line and now another IV. He's a pin cushion!

They don't think this was connected to the trach surgery - it was maybe exacerbated by the distension of the bowels, but as far as they know, these were separate issues. We all feel better about his full recovery now. He will still have to be in the hospital for another three weeks because it takes that long to be sure he is free of infection before they insert a new shunt. I do believe we will be able to have his birthday party here in the room (2031) on Monday as planned. You are all invited!

Dad is now on his way home. I hope he can get home without an accident because it's late. I will be with Ammon until I know he is comfortable and sleeping. He is still in the recovery room and they haven't called me yet to go see him. Then I will come back in this room and sleep (thank heavens).

Things are looking up!

Waiting

Ammon went into surgery tonight about 7:30 p.m. The doctor said it would be a minimum of 2 hours and a maximum might go into the morning. Other doctors came in to see how Jim and I felt about going ahead with such a tough surgery and offered us an out - they just wanted us to know that we didn't HAVE to do this. We knew that but decided to go ahead and give Ammon one more chance for better things.

We got a call about a half hour ago from the OR saying Ammon is doing very well but they still don't know what the problem is. We hope he finds what the problem is very quickly. There is something that is quite large near his bladder. Whatever it is communicates with the bladder but they have not been able to drain anything out of it. They do not know what they are going to find. We hope they figure it out quickly. It's been a sobering evening with lots of tears. For some reason, I feel fairly peaceful. I don't know what that means, but I'm letting the feeling move me a long.

I'll post more as we know.

Mom

I Love that Music!

Nice visit from Jess Tuesday night.

Music Therapist singing for Ammon, which really raised his spirits.

This is a scene that really touched me. We made the decision (with Ammon's agreement) to insert a pic line into a deep vein and get rid of the IV he had. He is on three very powerful antibiotics and one, in particular, tends to blow the veins so rather than having Ammon become a pin cushion again, we decided it might be best to do one IV (pic line) that would last through the three weeks we will be there. At first they were going to insert the line when he was sedated while they tried to extract the foreign fluid but when they decided not to do that, everyone was a little worried about sedating Ammon at all. They decided to insert this line without sedation. The line runs from his bicep up behind his collar bone and drops down near the heart. They did numb the site but that's all the help he was going to get.

When they decided against sedation, they rallied some help to keep Ammon distracted. The music therapist came in again to sing to him and a member of the Child Life came (man holding his hand in the photo). They all surrounded his bed and began to talk to him and entertain him. The music therapist sang songs about heroes and bravery and courage, inserting Ammon's name in all the songs. I couldn't stay in the room - my emotions were so close to the surface that I didn't want Ammon to think I was crying because I was sad or scared. I was touched to my soul at the goodness of these people that care so much about sick children and care so much about Ammon. What I didn't realize was that they made a deal with Ammon - if he was brave his mom would have to give him something. Ammon said, "Mom, I want a M-O-V-I-E." So I bought him one yesterday.

Ammon didn't flinch one bit during the procedure. He said afterward, "Oh, I love my pic line!"

The surgery that was supposed to happen at 7 a.m. this morning was postponed. This afternoon they inserted a tube to drain that mystery fluid but now that it is draining, it appears that it may be urine which means there is a leak in the bladder. If that is finally confrimed, then the surgery will have to happen. I hope they are able to wait until next Tuesday so Ammon can have a birthday celebration on Monday. You really can't celebrate much in the PICU. Maybe we'll know a little more tomorrow.

I thought Jim might post something because he has been there with Ammon for the past two days. He knows a lot more than I do. Ammon's spirits seem to be better today. He is really only interested when I'm coming up so I will bring up his new movie, "The Wizard of Oz". That's a pretty good sign!

I Hate the Hospital!

The smiles are few and far between but we caught one here. The headaches are gone but Ammon is still pretty sick. He has an external ventricular drain (EVD) in place right now and it will be here draining the ceberal spinal fluid (CSF) for the next three weeks.

I asked Ammon what he wanted to call this post and he gave me the title. It pretty much sums it all up. The diagnosis is still a bit of a mystery. When the neuorsurgeon pulled the shunt out, he found puss, indicating peritonitis. However, after the scan they did last night, the urologists aren't convinced there is a pocket of puss there. It had been planned to extract the puss this afternoon. The urologist, Dr. Cartwright, will be here soon to talk to me. The plan now is to wait until Thursday and then do another surgery when they open him up and look inside because they have some concerns about the augmentation and the bladder. The scan isn't definitive enough to give them any clear answer. Ammon is not happy about this nor am I. Dr. Cartwright is going to have to have some very good reasons why one more surgery is necessary. I will see what I can do to find another alternative.

I just met with a doctor with the infectious disease center and they will work with the group to manage the antibiotics to make sure they have the right kind for whatever they finally find. Ammon also has another UTI which doesn't help him feel great.

The Rainbow Kids came in this morning and they already have the wheels rolling. They have a music therapist coming in to see Ammon. She came in once this morning and had him almost laughing with her silly songs about how she hates the hospital. She let Ammon fill in the gaps with her funny song. The educator will also come in probably tomorrow to help with school issues, homework, etc. She could even call Ammon's teacher to see how to help him. The Child Life people will be coming in and they are going to have some peer volunteers come in as well to visit with him. Since Ammon is going to be here for a while, we decided it would be best to keep him as occupied as possible.

Right now he is full of doom and gloom. He told me that he thinks he is going to die when they intubate him again. I have spent most of the afternoon talking about pleasant things and encouraging him to fight this hoping he will find the will to not only survive but thrive.

I think visitors will be the key to keeping him happy and connected with the world.

The phone # that comes directly into his room is 801-662-2031. If you are asked to give a code to talk to him or us, the code # is 2495.

Party Is On Hold

The trach party, which was going to be held Oct. 10, is on hold. Ammon had surgery tonight to replace his shunt. Sunday he started showing some shunt malfunction symptoms (didn't want to wake up, had a headache, etc.) but we sent him to school this morning for the first time. He lasted until about 9:30 a.m. when they called Jim and told him to come and get him. Jim took him up to PCMC to have them check the pressure on Ammon's shunt and they determined that it was blocked and would need to be replaced. They also contacted Dr. Smith, the ENT, because Ammon was having trouble talking this morning (not a lot of energy and had to work pretty hard to be heard). Dr. Smith agreed to do an endoscopy and check out the trachea to make sure there wasn't a problem there and also agreed to to the intubation for the surgery. He helped Jim give Ammon a blessing before the surgery and Jim said it was a very special experience.

So at 4:45 p.m. this afternoon I found out they were going to do the surgery. I hadn't known for sure all day long where they were (dang no cell phone!). I couldn't go up after work because I had to interview some new candidates who want to become our new DSPD caseworker. When I got home I still couldn't find Jim and Ammon so I decided to stay home until I heard from them.

The news was not good! Ammon has peritonitis which is what he had just before Chelsey got married. That is an infection in his peritonial cavity and that, in turn, has probably infected his shunt. They had to pull the shunt and insert an external drain which means an automatic three week stay in the hospital. He will have to celebrate his 14th birthday in the hospital. How nasty is that?!

The endoscopy showed that his trachea looks great so that was the one piece of good news. I was able to talk to Ammon after the surgery and he sounded very good. He said his headache is gone. I will go up first thing tomorrow morning and stay until Wednesday morning when I have to go back to work. Jim and I will go back to our "routine" where he stays during the week and I go up on the weekends.

I kept asking doctors if the problems he's been having with the distension and the food just sitting in the stomach could possibly be peritonitis and they all reassured me it wasn't that. The symptoms were just too familiar. Now that we know what's wrong, we know how to fix it. Even though I was really sad and upset when Jim told me, at this moment I feel more peaceful than I have for the past three weeks. Ammon will have to be on heavy antibiotics for those three weeks, but he will feel a whole lot better than he has for a long time and will be able to play on the computer, watch movies, do homework, etc. Anyone that wants to visit is welcome!!! He will get very bored.

So the trach party is on hold but we will celebrate his birthday with him at the hospital.

Fun Stuff

Here are a few random photos. First two were taken at our last visit to PCMC.

You can see the scar on his neck - it is rapidly fading and will look like a wrinkle on his neck. It won't even be noticable. Gillian brought this cute photo to give to him so he wouldn't forget her.

This morning we broke some news to him that astounded him. He gave a huge gasp when he heard.

As you all know, a trach party is going to be held in the next couple of weeks. We want to make sure Ammon can eat Hershey bars at the party. A notice will be posted very soon as to when and where the party will be held.

Apparently an intern that works with the Rainbow Kids at PCMC heard that Ammon loves Hershey bars and that about the only thing he will eat is chocolate. She is from New Jersey and went home for a visit last weekend. While there, she crossed the state line and went to the Hershey plant in Hershey, Pennsylvania. She told them about Ammon and they sent bags and bags of Hershey candy home with her to give him for his trach out party so we could pass it out to everyone. He was dumbfounded and so excited! We now have to go to PCMC to pick up the candy.

Ahhhhhh,,, Herhsey bars -- that's really cool.

Church, Sleep Study and Stuff

I can't upload any photos tonight so they will come later. Today has been a pretty good day for Ammon. He had his sleep study last night. I went up with him last night and stayed with him until the test was over. They ran the test from 10:45 p.m. last night to 6:00 this morning. He had a hard time going to sleep and then wanted to sleep all the way home this morning. When we got home, I put him back to bed and he slept until about 10:00 a.m. I slept in the middle of church - ask Kaitlin, she had to wake me because I snored!

We won't know the results for a few days. He may have to use a bi-pap machine or maybe just oxygen. We're glad it's finally done and that last week is over. Jim was up there with him two or three times and it got really old to spend most of the days at PCMC. Friday they went to the Spina Bifida Clinic and had some tests done. We don't know the results of those, either, but every day he seems to get better. Urine output is normal and he seems to be tolerating his food better. We still don't give him just milk - we give him pedialyte about every other feed, but he's doing much better. The distension isn't nearly so noticeable. We think he's finally on the mend. His voice was much stronger part of the day today than it has been.

In fact, he seems so much better that he went to church today. He got to wear a tie - a brand new orange striped one that I bought in anticipation of this day. It's the first time he's been able to wear a tie since last December. I noticed that his spirits seemed to raise as the day went on and he was around more and more people. His old parents are not a good substitute for his peers - he is getting anxious to go back to school. If he continues to improve, we think he will be able to return to school next week.

When I can get this program to work, I will add a few random pictures of the past month.

Just kidding

At first I thought the doctors were testing me with some tests, but its a joke. they didn't. we talked to lots of docters and they said go see Doctor Valdez so that's exactly what we are going to do tomorrow and he will decide whether I will move on to Go Lightly or do something else.

I am so glad that I didn't have to go to the hospital again goodbye.

Hanging in There

Ammon is just hanging in here waiting for his body to decide to wake up and start working. He has a busy week this week and we hope he has the energy to do it all.

Tomorrow he has a post-op check with the ENT, Dr. Smith. Unless things really change between now and Tuesday, he will have another long doctor's appointment with Dr. Valdez, his pediatrician, to come up with something other than what we are doing. On Friday he is supposed to go to the Spina Bifida Clinic at PCMC.

We met with Dr. Valdez on Friday afternoon and spent three hours in the office. They did an ultrasound of Ammon's kidneys, stomach, plural cavity, bladder and intestines. One kidney is pretty sick looking but there didn't appear to be enough pressure to have any reflux so that is good. Everything is pretty distended still. It looks like the problem is with the large intestine. It has a lot of debris in it, meaning it isn't cleaning out properly. There must still be a block somewhere that hasn't been pinpointed yet. We have been flushing him every day using Miralax but it doesn't appear to be really taking care of the main problem. Ammon's belly is still very distended. He doesn't seem to be in a lot of pain and is fairly complacent about everything. If things haven't changed by Tuesday, I suspect Dr. Valdez will get the GI specialists involved and we may end up back at PCMC. We're hoping it will be just for a scope or ultrasound or something simple that can be taken care of in a day at the office.

Until then, Ammon is just hanging in there trying to keep occupied so he isn't so darn bored.

Visits are now appreciated. He misses people, misses school, misses his nurses (Richard and Todd) and misses visiting with anybody--somebody.

Home ... But for How Long?

Jim brought Ammon home tonight. I was so excited to see him and I think he was excited to see me. A friend sent a bunch of wrapped presents home with me and he tore into them to see what he got. He then said, "Look on the bright side." I said, "Bright side? Dude, you just made a haul, what more of a bright side do you need?" He said, "My birthday hasn't come yet!" What a greedy little kid he is.

About 15 minutes after I got home, Jim told me that it looks like his stomach isn't emptying. So I went in to look and sure enough, his stomach is distended about twice its normal size. We can't feed him right now until we figure out what to do. So if we can get through the night without major trouble, we will take him in to see Dr. Valdez first thing in the morning and see what they think we ought to do. Maybe we'll end up seeing the GI specialists after all. They had fed him twice at the hospital the way we do and he seemed to tolerate everything just fine. So they released him. We're just about where we were a week ago. I feel so badly for this kid! We thought things were finally working better. We're not sure now. DARN!

What the ?????!!!

We need Dr. Valdez to get up here and help us solve a few things - :) Where are you, doctor?

Ammon's lungs are doing a lot better. I think we've escaped the pneumonia scare but his stomach, bladder and bowels are still a big question mark. They were going to start Pedialyte this morning but his stomach had a big explosion around his g-tube and when we vented it, I didn't like what I saw coming out. I have requested that they bring the pediatrician back - find him somewhere and have them do a swab or test or something to see what's in his stomach. His belly area is very distended again today. He doesn't seem to be too uncomfortable but I'm confused about what's going on. Urine output is minimal. We need to find the urologists, too.

It's not over yet. But the good things are that his lungs sound good, his oxygen sats are doing much better today and he's talking up a storm. We have almost reclaimed our missing kid. His personality is beginning to blossom again. I don't know how he does it! I don't know how he puts up with all the garbage with such a pleasant, "thankful" attitude. He is always grateful for those that stick, poke and hurt him. Just now he had to get a new IV - it's his 6th since coming here on the 27th of July. It's his fourth this week. The IVs go bad - they can't function any longer so they have to re-stick him. This has been his most hated event of every hospital stay. He hasn't cried one tear or made one complaint this time.

How much prouder can somebody be than I am of him?? He has such a strong character in every situation. His Dad is definitely proud of him, too.

Slow Progress

I think Ammon is making some slow progress. There are several problems we are working on, but the main culpret was the infection in his bladder/kidneys. It was a bad one and it caused problems with his bowels, effectively shutting everything down. For the past two days they have been working to get his bowels totally cleaned out (in a milder manner than if he was going in for a colonoscopy). They have been draining his g-tube and he has been unable to eat any regular food. Today they clamped the g-tube to see if he would produce too much gas again. So far he seems to be fairly comfortable with his tummy.

Our biggest worry right now is his inability to cough the rattles out. The mucus or whatever it is that is causing the mucus is coming from the healing process in the trachea. Because of the surgery, they will not allow him to be deep suctioned to get it all out. He is able to be suctioned through his nose just a short distance into the top of the throat and they are doing compressions on his back and chest to keep things broken up in the lung area. If we can get through this little process, we will be making great progress. He had a lung x-ray this afternoon to see how his lungs look. Pneumonia would be a huge problem for him if he got it.

He has also broken out into a nasty rash all over his chest, face, shoulders and back. They don't know what is causing this because the antibiotic he is getting for the UTI is one he's had many times and has never had a reaction to. They are treating that with Calamine lotion just to keep him comfortable and a Bacritiban to help heal the puzzling sore on his ear.

Yesterday we took him down and let him have a real bath. We put him on a kind of bed/sling and it lowers him down into the water. He kept moving the water with his arms said, "This is the best thing that's happened to me." He'll get another bath tomorrow after his bowels are done cleaning out.

I suspect, if we can avoid pneumonia, that we will be here until Wednesday. I hope that isn't an optimistic goal but a realistic one. We definitely don't want to take him home until he is good and well. His voice is very weak and he doesn't have much energy but he is a lot more interactive and can focus on our eyes better.

Ammon and I watched the BYU/Oklahoma football game last night. He wasn't doing much yelling and I was trying to hold it inside in deference to other patients in this hospital, but I sure was jumping up and down. I had my BYU shirt on and after the game was over, I cruised all over the hospital proudly wearing this shirt. What an awesome game and fun time I had watching it! Ammon wasn't quite as enthusiastic as I was, but he was happy about it.

Mystery Diagnosis

Well, we still aren't sure what's the root of the problems Ammon has. Some things have been eliminated and those were some worrisome things. This afternoon they did a cystogram (dye in the bladder) to see if there was a tear or leak in the bladder. There is no leak and that is good. However, they put in about 600 ml of dye and it still has not drained out. Where does it go? Why doesn't it drain? We are waiting for the urologists to make an appearance to see if they can figure out what's going on. We do know that his bladder is distended and so is his bowel. He sounds rattly and you can feel the rattles in the upper part of his chest but his lungs look great from the x-rays. He is in some pain and so it hurts for him to give a good clear cough to clear the rattles. Our worry is pneumonia unless the pain subsides. The surgical team will be coming up to see if they have any little tricks up their sleeve to get things moving.

This is probably due to an ileitis of some kind that happens after surgery. The ENT, Dr. Smith has been in to see Ammon and is on board for his future care. Dr. Pfeffer will be called if necessary to deal with lung issues.

He sounds a little better and his temperature is somewhat better. He's still not real interactive and responsive. They are going to give him a little bit of morphine to get him to sleep and to relieve the pain. He is not supposed to have any kind of feeds through his stomach right now. They are draining all kinds of ugly stuff out of the stomach so they can't give him Tylenlol. Right now he's a complicated little kid but it probably has to do with feeding him full feeds too soon and the flushing of the bowels that was a little too hard on his body. But how do you not do those things? So many questions. I hope we can get it all sorted out quickly.