It's scary when my kids are sick because they can't tell you that they don't feel well.
A few summers ago, Nate started acting strange. There were times that he was walking all stooped over and then he would straighten up. He seemed to be ok. He was eating, drinking, and playing just fine. After a few days of this he started to vomit and sleep a lot. On July 3rd, he was much worse so we went to the emergency room at Childern's Hospital.
We have always received the best care for the boys at Children's. We get a private room (no one wants to hear the screaming), they try to get us helped as quickly as possible, and they can handle the boys. Nate was running a fever and decided to do blood work.....not fun. It took many people to hold him down. His white blood cell count was very high, sign of infection, but where? His throat and ears were clear so they brought down a surgical intern. He put Nate through the drill to see if his appendix had ruptured. Nate could stand up and jump. This convinced the intern that his appendix was fine. The doctor then wanted to test his urine. Nate was VERY confused. We now wanted him to pee in a cup??????
The urine test came back positive. Nate had a urinary tract infection. I sent Tim down to the cafe for some drinks so I could talk to the doctor in private. How did my 10 year old boy get a urinary tract infection? Did I have something more pressing to worry about? Like who was touching my kid?????? Nate and Noah would be perfect targets for a pedophile since they can't talk to tell anyone what happened. I wanted to have this conversation with the doctor without Tim being there. I didn't think Tim could handle it. He would definitely kill someone. The doctor suggested I talk to the teacher at summer school and start an investigation.
They wanted to give Nate an IV, but he was so agitated that I convinced the doctor to just give him a shot of an antibiotic and let us go home. I promised to keep him well hydrated and just wanted Nate to sleep in his own bed. We got home around midnight and Nate fell right asleep.
Tim had a pole vault expo he had to attend in the morning. When Nate woke up, he was much worse. He was vomiting and had diarrhea. I called Vicki to watch Nick and Noah so I could take Nate back to the er. As I was trying to get Nate ready, he was laying in my bed. He had diarrhea in my bed and was just laying in it. He couldn't even get up out of the mess. I called the er to tell them we were coming back in. They put me in contact with the same doctor from the night before who told me that the second urine test came back negative. This was definitely not a urinary tract infection. I rushed Nate back in.
My mom met us at the er. By now, Nate was dehydrated and needed an IV. It took 6 of us to hold him down. At one point, my mother told the doctor to come up with a different plan, because this one wasn't working. I begged them to sedate Nate, but they wouldn't. The doctor wanted to do a CAT scan. I begged them to sedate him. They assured me it would be fine. They gave him some medicine up the nose to relax him. Luckily, Tim got there before the CAT scan. It took Tim and I holding Nate down 3 times through the machine before it worked. By the way, Tim and I were totally healthy. Nate's appendix had ruptured. It looked like it had ruptured two days earlier.
Now a surgical resident came to see me. Here's the plan: we will go in and insert a drain into his side to drain all the infection out of his belly. We will send you home and the drain needs to remain in for 10 days. The words "Have you ever heard of autism?" came out of my mouth. I told him there was no way in hell Nate would leave that drain in and if he didn't rip it out, one of his autistic brothers would. You need to come up with a new plan.
They email the films to the surgical fellow who was at a 4th of July BBQ. His plan, get him prepped for surgery, he would be in within 20 minutes. Then everything happened so fast. They finally sedated Nate....he was so inconsolable and miserable. He was in surgery in no time. The surgery took so long. Not only had it ruptured, but it had turned gangrenous. The surgeon stayed and scraped every bit of infection out of his belly so he wouldn't need the tube up his nose bringing it out. He understood that Nate couldn't tolerate that tube. The IV would be bad enough.
We spent 9 nights in the hospital with the IV antibiotics. They kept him pretty heavily sedated the first few days. His pediatrician came in the next morning to see Nate. He commented that he'd never seen Nate so peaceful....he was sleeping and is usually screaming at the doctor's office. The nurses were great with his care. Nate got used to the IV, but hated it when the doctor would come in to check his wound. Everyone listened to Tim and I when we had suggestions of how to handle Nate. The poor intern who sent us home the first night was at rounds every morning at 5:30 am.
When we left, the staff made a point to tell us that this had been a great learning experience for them. We are so thankful to have such a good children's hospital so close.
Thursday, January 27, 2011
Saturday, January 15, 2011
I feel hope
It's now been 2 weeks of in-home ABA. I am beginning to feel like the tide is turning. We have been given more weapons to fight the battle with autism.
Nate is much more capable than I thought....or actually, more capable than I have time to let him be. It's so much faster and easier for Tim or I to do tasks for him in the morning. Now, the ABA staff can wait and give him the time he needs to be successful. I got the vacuum out last night to run and Nate actually took it from me to run himself. I couldn't believe it.
Noah's whole demeanor is improving. I don't know if it's the structured routine in the morning or the new school. He is sitting for longer periods at the table to eat and is holding his toothbrush himself and attempting to brush his teeth. He has had 2 great weeks at his new school. They told Tim that they are thinking about moving him to a higher functioning room. We hope they remember that he did this in the other building as well. He had 4 to 6 great weeks and then all hell broke loose. We will wait and see.
When I say that I am hopeful, don't think that I believe that Nate and Noah will be cured. I know they won't. I know that they will live in an assisted facility and never drive. I know that they will never marry or have kids. But, I do know that will a lot of hard work, they can gain small bits of independence and live productive, purposeful lives.
Nate is much more capable than I thought....or actually, more capable than I have time to let him be. It's so much faster and easier for Tim or I to do tasks for him in the morning. Now, the ABA staff can wait and give him the time he needs to be successful. I got the vacuum out last night to run and Nate actually took it from me to run himself. I couldn't believe it.
Noah's whole demeanor is improving. I don't know if it's the structured routine in the morning or the new school. He is sitting for longer periods at the table to eat and is holding his toothbrush himself and attempting to brush his teeth. He has had 2 great weeks at his new school. They told Tim that they are thinking about moving him to a higher functioning room. We hope they remember that he did this in the other building as well. He had 4 to 6 great weeks and then all hell broke loose. We will wait and see.
When I say that I am hopeful, don't think that I believe that Nate and Noah will be cured. I know they won't. I know that they will live in an assisted facility and never drive. I know that they will never marry or have kids. But, I do know that will a lot of hard work, they can gain small bits of independence and live productive, purposeful lives.
Sunday, January 9, 2011
It's been a week....
Well, it's been a full week with new people in the house. I feel like a new woman! Nick and I are walking out the door at 7:30 (on time). I am no longer frustrated by trying to keep Noah dressed so we can walk out the door.
The second day the therapist showed up in Nate's room at 6:30, the look on his face was priceless. I'm sure he thought it was fun for one day, but this was an everyday thing????? He didn't get the memo. The therapist helps Nate make choose clothes and waits for him to get dressed. They then come into the kitchen where he helps fix his own breakfast (he choose pancakes the first 2 mornings....he loves his carbs). She sits with him while he eats and reviews his data from the day before. Then, he cleans up his dishes, brushes his teeth (with assistance), and washes his face (with assistance). He will now tolerate warm water to wash his face and hands. He also makes his bed (slowly). He then gets break and can choose a fun activity. He then comes up and helps unload the silverware from the dishwasher. Since he HATES the vacuum, he has run it all 5 mornings. He then gets another fun choice and then waits for the bus.
Noah has also been working hard in the mornings. I think his therapist has been working harder.... He threw a massive fit one morning because I thought he might try oatmeal for breakfast. I was wrong!!! Just the sight of the oatmeal sent him to the floor kicking and screaming. This went on for the better part of the 2 hours. His therapist is also learning how quickly Noah can take his clothes off. After the third morning, the stripping isn't getting further than his shoes. They are helping him learn how to put his clothes ON, sit at the table during a meal, use a utensil. and not shove all his food in his mouth at one time. After breakfast, he gets to choose a fun activity. Afterwards, he makes his bed (with assistance) and brushes his teeth (with assistance and no screaming). When all this is finished, he works on some academic skills. His body parts now include head, eyes, ears, nose, mouth, tummy, and knees. They are also reviewing his letters and teaching him how to sit and follow along with a book.
Nick is also reaping benefits. He no longer tries to follow after his brothers in the morning and keep them on track. He also remembers to make his bed when he hears Nate being instructed to make his. He did not butt in when Noah was having his tantrum the other morning. I was so proud of him! He let the therapist deal with it and just went about his own business.
Two other therapists came today from 9 to 1. They took Nate and Noah bowling and out to lunch. Apparently, Noah ran and slid down the lane a few times. His pants are covered in the oil from the lane. He used the restroom in the bowling alley and had a meltdown over the electric hand dryer. He dropped to the floor and screamed for several minutes. The therapist got him to quiet down and even made him turn it on again before he could leave the restroom. He will be using every public restroom they can find.
Noah is also adjusting well to his new school. I called to check on him one day and it was so nice that the child screaming in the background was not Noah. It made me smile.......
The second day the therapist showed up in Nate's room at 6:30, the look on his face was priceless. I'm sure he thought it was fun for one day, but this was an everyday thing????? He didn't get the memo. The therapist helps Nate make choose clothes and waits for him to get dressed. They then come into the kitchen where he helps fix his own breakfast (he choose pancakes the first 2 mornings....he loves his carbs). She sits with him while he eats and reviews his data from the day before. Then, he cleans up his dishes, brushes his teeth (with assistance), and washes his face (with assistance). He will now tolerate warm water to wash his face and hands. He also makes his bed (slowly). He then gets break and can choose a fun activity. He then comes up and helps unload the silverware from the dishwasher. Since he HATES the vacuum, he has run it all 5 mornings. He then gets another fun choice and then waits for the bus.
Noah has also been working hard in the mornings. I think his therapist has been working harder.... He threw a massive fit one morning because I thought he might try oatmeal for breakfast. I was wrong!!! Just the sight of the oatmeal sent him to the floor kicking and screaming. This went on for the better part of the 2 hours. His therapist is also learning how quickly Noah can take his clothes off. After the third morning, the stripping isn't getting further than his shoes. They are helping him learn how to put his clothes ON, sit at the table during a meal, use a utensil. and not shove all his food in his mouth at one time. After breakfast, he gets to choose a fun activity. Afterwards, he makes his bed (with assistance) and brushes his teeth (with assistance and no screaming). When all this is finished, he works on some academic skills. His body parts now include head, eyes, ears, nose, mouth, tummy, and knees. They are also reviewing his letters and teaching him how to sit and follow along with a book.
Nick is also reaping benefits. He no longer tries to follow after his brothers in the morning and keep them on track. He also remembers to make his bed when he hears Nate being instructed to make his. He did not butt in when Noah was having his tantrum the other morning. I was so proud of him! He let the therapist deal with it and just went about his own business.
Two other therapists came today from 9 to 1. They took Nate and Noah bowling and out to lunch. Apparently, Noah ran and slid down the lane a few times. His pants are covered in the oil from the lane. He used the restroom in the bowling alley and had a meltdown over the electric hand dryer. He dropped to the floor and screamed for several minutes. The therapist got him to quiet down and even made him turn it on again before he could leave the restroom. He will be using every public restroom they can find.
Noah is also adjusting well to his new school. I called to check on him one day and it was so nice that the child screaming in the background was not Noah. It made me smile.......
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