Sam Monday night-HOME

Monday night. We fell asleep around 10:30. The nurses come in at midnight, woke me up to say, Sam is really cold and his heart rate was low(68). His temp had dropped to around 95 almost 96. They had me hold him with heating pads, warm blankets, and the heat turned up to over 80. He started to warm, but still his little heart rate was low. They gave him a bolas (a ton of fluids really fast-220cc in a half hour). This helped bring the rate up some, but not as much as they would like. The doctor ordered a blood test to check his sodium and blood gas levels and it came back ok. Around 4 am, they had us lay him down again and let him rest. I left to go use the restroom/update our blog and when i came back there were about 15 people jammed in our room. When I had left, Shad was standing by the bed rubbing Sam's head, when one of the alarms went off, Sam didn't budge. Shad rubbed his little ear, and it went off again, again no movement. Shad flicked his ear and still nothing! He did it a little harder and Sam didn't react at all. He got the nurses, who called the stat cart. To get him to wake up they were holding him up, doing a chest rub, back rub, and Shad was patting his face his face. When I had walked up (I was gone for maybe 5-10 minutes) they had just woken him up. Shad was white. I was white. The nurses were worried. We watched him again until around 5 when we went back to sleep ourselves. The nurses woke me up at 5:30. Sam's heart rate=59. He is still cold, and his cap refills are at 5 and 6. His soft spot was sunken. Another round of bolsa, more heating pads, and and EKG. The EKG guy came to our room and put on 15 little sticky tabs and attached cords to the machine. After the test, he immediately left. Once again, I am not holding up too well. At 6:30 I call my mom to come up. I am freaking out. The doctor came in a few hours later and says that his EKG shows that his has a irregular regular heart rate. He is having long breaks, and short breaks, but this is a normal abnormal rate. He said that if this was the only problem, he wouldn't worry so much, but with the low temp, heart rate, and lethargy (he was really lethargic too-who wouldn't be though when you haven't eaten in almost a week, and haven't gotten any sleep). We needed another CT scan. We head down for another CT scan and this time Sam was freaked out. His little eyes were open so wide. His eyebrows were practically on top of his head. The results came back quick that everything was fine. The day called for rest, and watch. Nothing else dramatic happened the rest of Tuesday. THANK GOODNESS. Just blood work every few hours, antibiotics and at 3 pm an ounce and half of pedialyte! The doctor said he could have 1 1/2 oz every 2 hours, then at 9 we got to do it every hour. He actually ended up letting us give him what he wanted at the 9 o'clock, but Sam could only do another 3 oz. We were treated to a twin bed instead of the crib, which was awesome now we could snuggle with him. We were able to sleep most of the night, only awake for the vitals every couple hours. Around 3 the nurses came in for vitals check and Shad realized he was all wet. He didn't say anything thinking he may have peed the bed, then he noticed his pants were dry. Sam's foot IV had come out. The IV team was called to put in another one. They were usually really quick at getting them in, but this time it took 4 pokes and 45 minutes to get the line in. This exhausted all of us and we ended up sleeping until close to 7 after that ordeal.

Wednesday morning the doctor and team of residents came by and gave the ok for Sam to eat like a normal kid, but no milk products. His little tummy has to get the enzymes back for processing milk. He said that all the tests came back showing that the bacteria was gone the first night at primary's, so no need for a pick line! We were so excited. I gave him a banana and 2 crackers, and around 17 oz of pedialyte and apple juice. It took 2 hours for him to stool, then he threw it all up (on Shad). Another set back, but they said to keep feeding him. He ate little bits throughout the day, and by evening he was eating like a champ. When Sam turns the corner, he turns the corner! We slept really well Wed. night and awaited the rounds for Thurs. We were discharged with only a little rx for some lactose for his stomach. We were scheduled for a follow up on Friday morning with our PCP and told to watch him for any fevers, diarrhea, throwing up etc.

He lost a total of 3 pounds and his little legs look soooo tiny. His neck looks small too. He gets pretty tired easily, and we can't take him out in public for a while. No milk products of any kind for at least a week. I told the Doctor I was going home to throw out everything in the fridge and cupboards. He said he wouldn't go that far. He said they couldn't confirm that it was the cerous species of bacillus. He said that it was such a rare thing he got, and we will never know how he really contracted it. It still all got chucked. Sam seems to giggle a lot more now, and we all are so thankful we still have him with us.

You thought I was done? Tuesday night (night after the EKG), we got a phone call from mom Johnson saying our basement flooded! When it rains it poors. Thanks to Sarinah for coming by to do some laundry and cleaning for me (some, I say, but our house was PERFECT when we got home), she found water downstairs. Our toilet had been flushed the day before (thanks grandpa) and it didn't stop running. This could have happened to any of us. lol. The water leaked and leaked until it overflowed and went down the vent in the bathroom. By the time mom J. called us there was a party of people at our house pulling up the carpet, and tearing down the ceiling. What awesome friends and family we have to be here so fast to fix the mess. The carpet is now dry and we replaced the ceiling.

SOOOOO

Thanks for all your prayers. I know this is why Sam was healed. Thanks to Sarinah for doing so much crap work at my home. Thanks Jason, Kevin, Mark, and all who were here for cleaning the basement. Thanks Jason for feeding the dogs. Thanks to mom Johnson for all the treats at the hospital and taking care of Kelton. Thanks Gr. Wall for entertaining the nurses, and Kelton. Thanks to Mom Wall for being at the hospital day in and day out. You are what kept me sane. I know I am not mentioning everyone, but you know who you are. I am really thankful for my family and friends and for the awesome Doctors (especially Dr. Adam Stevenson), and the coolest nurses ever at Primary's. I am happy this is over.

a couple of pictures

The nurses made this certificate for Sam and his accomplishment. The reason it says S. Gary is my dad. His name is Gary, and every time he talked to the nurses he would say "samuel GARY" is the preferred name. lol

Sam-continued

Sunday morning. Sam has been awake most of the night, I think he maybe slept 30 minutes 3 or 4 times. He was so thirsty, so hungry, hurting with cramps. His sodium and potassium have started to drop, but one of the readings showed that it dropped a little too quick. The doctor came in around 7 am and said that we are not to give him anything in his mouth at all. He is not to eat. He went over the GI track with us, and how it works. Sam's GI track was so inflamed that the cilia inside were paralyzed, therefore all the jello, popsicles, and pedialyte we gave him was literally going down him like a slide. He said that we needed to do "bowel rest" for at least 48 hours, meaning no food, no iv food, just IV fluids to maintain his electrolytes. He said as a doctor this is what needs to happen, but socially this is going to be extremely difficult. Sam will want to eat, he is already weak, but he will want to drink. You will need to take shifts with him, because it will be too much for you to be here all the time. By this time I am bawling, I was already crying since I couldn't help Sam anyway, but now I am sobbing. There is no way I will leave him at the hospital. We have family helping us and giving us much needed breaks, but not breaks away from the hospital. We asked what was wrong with him, and why this was happening, and he said they don't know at this point. They are waiting on cultures from American Fork to come back, and they would be taking their own at Primary's. He then said that he and the other doctors had never seen so much stool output in any one person. Stool output is measured per kilo of weight. A normal person has an output of 20-40 per kilo per day. When you have bad diarrhea you will have about 60-80 per day, Sam had 500 that day. Which means he crapped 5 liters in 24 hours. Nobody at Primary Children's has ever seen that amount of output. Next, because his sodium level dropped from 155 to 148 in 2 hours, they wanted to do a CT scan to make sure there isn't any brain swelling. OK. How do you watch your little 17 month old go into a machine that is WAY too big, and scary? We were able to stand with him next to the CT machine, then the tech told us why they were doing this again. I am crying, I am trying to not let Sam see me crying. He was actually doing pretty good at this point. He was really worn out from the last 3 nights, and pretty weak anyway from all the trauma he had been through. The CT was normal, and we were relieved. The IV team came and took massive amounts of blood, and the day went on. He had an abdominal xray to make sure there wasn't anything wrong internally, and that came back normal as well. Sam didn't poop from about 10 am Sunday until Wednesday! They continued to prick every 2 hours, and a little bigger one at 4 hours. Shad and I were getting really frustrated that they couldn't tell us what was wrong, why he was so sick. Down the hall from us we could hear the doctors talking about him in their boardroom. They had a team of about 20 doctors and interns/residents trying to figure out what was happening, and what to do from there. They were saying the only thing this resembles is cholera. What? That doesn't even exist here! That is what they said too, but the stool output, the throwing up etc. Sunday turned into Sunday night,it went a little better than Saturday, he slept for about an hour and a half at a time and Shad and I took turns staring at him. Monday morning came. His levels of electrolytes and his blood gas finally stabilized around midnight on Sunday. Monday we got another visit from the doctor and he said he is almost certain it was a bacteria in his blood known as bacillus, cereus. They would begin an IV antibiotic and continue with the fluids. We were still waiting on the blood work they had taken, but he was 95% sure it was bacillus. He said that the most common cause of this is from rice, grain, or even some fruits and takes anywhere from 1 to 16 hours to germinate. Nice, so I was the one who gave him poison. This is a VERY rare type bacteria and this is why it took so long to figure out. They were certain it was the cereus species yet, but for sure it was in the bacillus family. Monday dragged on. We took turns holding him, and giving him loves. It was so difficult watching him lay there looking like he wasn't going to make it much longer. (and to think the worst was behind us)

continued

I returned to the hospital, Shad went home, and the night began. Dr. Mower came by (even though he was off) and took a look at him and thought that he would be doing better by morning with more fluids. There was about 20 minutes between diaper changes and one long span of about an hour and 10 minutes where we actually got some sleep. The nurses had to come in and take blood a few times, but had a hard time getting him to bleed since he was so dehydrated. The night was long, and Sam was oh so sick. Morning came, Shad and Kelton arrived, a hospital pediatrician came by to check him out-then Dr. Mower did too. They both looked at him for a few minutes and said that he is going to have to stay there until they know what is wrong, he just looked so ill. The tests results were showing his electrolytes being all out of whack, so out of whack that they thought they were wrong, and continued to poke 3 more times to repeat the tests. I returned home to get a little rest, about forty five minutes later Shad called...."Sam has 2 iv's now, a catheter, his sodium and potassium are really high, and they are taking him to primary's in about 10 minutes. WHAT??? I leave for an hour and this is what happens? I knew I shouldn't have left. I then couldn't find my keys (they were still in the door), called my mother in law (actually called our home phone twice first), and headed out the door. When I arrived at the hospital, they were getting Sam ready for the ride. He had a catheter, an iv in both hands, and was terribly afraid, he just wanted to be held. I am not a crier, and when I saw them strapping him down and putting him in the ambulance, I couldn't pull myself together. The hospital weighed him and he had already lost 2 pounds since 3o'clock the day before! I asked if I could ride with them in the ambulance and they said yes, but only in the front. I opted to ride behind with Shad. The ride was long.

We arrived at Primary Children's late Saturday morning. Actually it was probably around noon. We had several residents and nurses checking him in, attaching equipment. This took quite a while. They started fluids right away and started asking questions. Many questions. We asked questions too. Learned that if his sodium levels dropped too quickly it could cause brain swelling, if his potassium did, it could cause a heart arrhythmia. We were allowed to let him drink the fluids he wanted, along with jello and popsicles. Late evening came, and the stool didn't stop. We timed how long it would take for him to go from eating to pooping and it was about 10 minutes. He ate jello, and it came out literally looking like we just scooped the jello into his diaper. He was in pain with cramps, he was so thirsty, he was exhausted. We couldn't do anything to make him feel better. We asked for something to help with the pain, or to sedate him, but they couldn't. They wanted to make sure that he was alert. They moved us across the hall that evening and Saturday night began. Again we were constantly changing diapers. ALL NIGHT. They had 2 iv's going constantly and were checking his sodium and potassium every 2 hours through a finger prick, and every 4 hours for his gas levels with a little more than a prick. Long, long night.

to be continued..... sorry, can't type all at once, i want to make sure i get the details right, and i get too burned out after about that much at a time.

Sam-what happened?

First I need to say thanks to everyone for all your prayers and your support. This has been the worst week of my life. It has also been a week to remember. To remember how lucky we are to have friends and family. This is going to be a boring post, but this is my journal too. Here it goes.

Thursday March 19th, Sam wakes up around 6:30 with vomit in his bed that looks like grapes. I get him up, feed him some oatmeal, 20 minutes later, the oatmeal is all over him, the couch, and me. The rest of the day is a blur of cleaning up puke. It didn't matter what I gave him, it came right back up. Thinking it was a "flu bug" I continued to give him fluids.

Friday March 20th Really lethargic. He doesn't move an inch off the air-mattress (I set it up the night before to sleep with him). He has no interest in food or drink. He sleeps most of the day. I called the Dr. around 1:45 to see if I should bring him in, he hasn't eaten or kept anything down in over 24 hours and hasn't had a wet diaper since Thurs. night. They say bring him in at 2. I see the PA since my doc has Friday's off. The PA says he should get an iv of fluid, but didn't know if he should be admitted. He retrieves a pediatrician in the office and he comes to check him out. He also thinks Sam should get some fluids, then be re-evaluated. I carry Sam from the Dr. office to the Hospital. Get checked in, an IV inserted and wait for 2 hours while he gets fluids. "He will really perk up after the fluids, he is just really dehydrated" says the Dr. and the nurses. The IV is finished around 5 and he is still just laying there. The nurses and I both think something is odd, but don't know what is wrong. She calls the Dr. (not working today remember) and he sounds kind of annoyed that he was called on his day off. I talk to him saying Sam is still really lethargic, has a fever (102 since Thurs. night). He gives me the option of going home and being re-checked in the morning, or staying at the hospital. I don't know what to say, I'm not a physician. He calls the ped. that saw him earlier and calls back saying we should stay the night, get more fluids, then will be fine in the morning. It is "probably just a tummy virus and he needs more fluids". We get admitted, start another drip, Sam pukes all over the bed, Shad arrives after we clean the bed. I go home to get clothes and a bite to eat. I call Shad to check on Sam, and he says there has been another "accident", not vomit this time, but stool. He lifted Sam's legs to change his diaper and he squirted all over Shad. We were all laughing so hard at how explosive it was, and how Shad got drenched in Sam stool. Little did we know, this was the beginning...

to be continued.

Sam

A little update for those of you who don't know. This will be short and sweet cause this keyboard totally sucks. Sam had what appeared to be a flu on thurs. and fri. He seemed lethargic, so I took him to the doctor. They sent us to AF hospital to get some fluids and we ended up staying over. His electolyte levels were all out of wack by Sat. and so they took him by ambulance to Primary Childrens where we remain. He made the record here of "stool" at 500 per kilo, which is basically 5 liters of shit. They took him off of all food (he was only allowed clears anyway). His bowels needed a rest (his poo was coming out jello if he ate jello, it was literally taking 10 minutes for whatever went in his mouth to come out the other end. They got his levels stable last night(sunday)and did an xray and cat scan and both looked good. They weren't sure was was causing all of this, and he has bacteria in his blood. Yesterday afternoon they decided it was most likely bacilles cerrus. I totally just spelled that wrong, but it's close enough. He will get to have liquids in the morning sometime and they will put a pick line in to keep an eye on his blood levels and give him antibiotics. If all goes well we will be able to come home on wed. night. He just gave us a scare around midnight when his temp. dropped and his heart rate dropped really low. We couldn't wake him up. They did a blood gas test, which just came back normal and we are heating him up with lots of blankets and heating pads. He is doing fine, but the last 4 hours have been really scary. He isn't active at all, but alert and knows when the nurses come in he will be getting touched. That's all I can type right now, got to get back in the room. We have great nurses, and awesome doctors here, I will elaborate more later.

Chillin at mom's

I went to mom's house with good intentions to help do a little spring cleaning, but ended up doing this...











and I feel so much better. Thanks mom. We won't post the "hair cut" that Sam got.. everyone will see it soon enough. It will grow, it will grow, it will grow.

4 wheeler

ahhhh






I also got some seriously funny video of him as well, just trying to figure out how to shorten it and be able to upload it. I can totally do the long version, but so far it has taken almost 20 minutes to upload.

Draper Temple

Mom and Dad took us to the Draper Temple open house yesterday. It was beautiful. It was awesome. It was peaceful.