Tuesday, September 29, 2009

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.

Monday, September 28, 2009

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.

Tuesday, September 22, 2009

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.

Sunday, September 20, 2009

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.

Monday, September 14, 2009

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.

Sunday, September 13, 2009

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.

Thursday, September 10, 2009

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!

Monday, September 7, 2009

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.

Sunday, September 6, 2009

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.

Friday, September 4, 2009

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.

Back at the Hospital

Yesterday about 11:00 a.m. Jim noticed that Ammon appeared to be really sick. Jim had been working with Ammon throughout the morning and hadn't noticed anything unusual. I had cathed and fed Ammon before I went to work and he seemed ok - not fine but ok. As the day progressed, Jim became more and more alarmed because he wasn't able to get any urine out of him. He fed him the usual amount but couldn't get anywhere the near amount of urine.

By the time I got home, I took one look at Ammon and felt great worry. We quickly called Steve Linford and asked him to come and help give Ammon a blessing and then we took off. I had to work an hour overtime last night so I didn't get home until about 6:45. Jim had contacted the urilogy department and Dr. Smith. They instructed us to get him to the ER.

The shortest time we've ever been able to get through the ER has been 5 hours. We got up there at about 8:45 and Ammon got into a regular room at about 3:00 a.m. I came home, arriving at about 3:15. It was, as Jess said, a very long night.

The only thing we know at this point is that Ammon has a massive UTI. He should never have been sent home without treating it. I didn't pick up on it because things looked normal. Apparently his urine was never tested while he was up there. We don't know for sure whether this can cause what's happening but he is one very sick boy. Instead of manifesting a fever, his body went the other direction - his temperature was below normal and I couldn't get him warm. He was cold, clammy, fairly non-responsive and his tummy hurts, being distended. There's a possiblity that there is a tear in his bladder but they think that is unlikely. I'm sure Ammon will go through more tests today. They started him on an IV antibiotic and Jim said this morning that Ammon was talking and seemed a little better. He might have been a little dehydrated although he was getting usual volumes of liquid.

The long and short of it right now is that he is sick, sick, sick and he's back in the hospital. You can reach us at room 3041 (medical floor). The main hospital phone # is 801-662-1000. I don't think you will need a code for this room. If you do, I will post it later this afternoon.

I plan to go to work this morning for a while (emergencies all over the place there) and will then go up to the hospital for the weekend and Jim will come home.

Today I'm really mad that we don't have a cell phone!!!!!

Tuesday, September 1, 2009

He's Awake!

The tube is out and he is awake! Last night they successfully extubated Ammon. Everything looks super and he is donig very well. He will move out of PICU some time today. He is smiling from ear to ear today. He's still a bit groggy. Dr. Smith said it will take a couple of days for all the medication to wear off. He doesn't appear to be in any pain. Tylenlol seems to be sufficient at this point.

He is on room air so he doesn't need supplemental oxygen and his blood gases were perfect today. The blood gas levels are one of the reasons he was put on a ventilator so we are watching those very carefully. All things are good today. He is soooo happy!