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!