So, I had Keith's IEP team meeting today. Went very well, and got a lot of good feedback from his teachers/helpers. He's doing very good with reading, writing and sounds. He has a little trouble with sounding things out, but he is getting there.
The teacher told me something that Keith did in school on Monday, and I wanted to share. At breakfast, he was eating cereal and I guess he told Miss Wendy (breakfast monitor) that it was hurting his throat. She said to him, "why don't you try your cheese stick, it will feel good on your throat?"
So, he unwrapped the cheese stick and proceeded to rub it all over his neck.
Nice. Only my kid.
Wednesday, February 29, 2012
Sunday, February 26, 2012
Green Onions: Another Thing I learned from Pinterest
A few weeks ago, I came across a pin that showed how to grow green onions in a glass/cup or whatever you have. I love green onions, but never have them on hand. I thought it would be a neat idea to try! Luckily, the day I went to the store they happened to be having a sale, 2 green onion batches for $1.00. Bonus!! I bought $2 worth, brought them home, trimmed them down and put them in a cup of water.
Roughly every 2 or 3 days now I am trimming these bad boys down! I've made several small bowls of onions and now use them in everything-- eggs, tuna, cooking misc, meatloaf, soups, potato toppings, ect.
I thought it was a neat trick, and I definitely am taking advantage of it! The week Keith was in the hopsital, my stalks grew tall! I had a lot of onions to cut. I may have to research and see if these can be frozen? I probably can find the answer to that on pinterest somewhere. Seems to have everything else there!
Roughly every 2 or 3 days now I am trimming these bad boys down! I've made several small bowls of onions and now use them in everything-- eggs, tuna, cooking misc, meatloaf, soups, potato toppings, ect.
I thought it was a neat trick, and I definitely am taking advantage of it! The week Keith was in the hopsital, my stalks grew tall! I had a lot of onions to cut. I may have to research and see if these can be frozen? I probably can find the answer to that on pinterest somewhere. Seems to have everything else there!
Sometimes being a block head can be super cute
Kyleigh loves to walk around with her shape sorter on her head as a hat. She will do this ALL day long. It's so funny to see, and she thought of it all herself. The cutest "block head" ever :)
Anybody know what this flower / plant is?
So, my old neighbor gave me a "clipping" from a huge plant/flower that was growing in her yard several years ago. I put it in a pot and it blooms purple flowers each year. During the winter the flowers turn brown, the leaves get "crispy". In the spring, these green "bud" like leaves appear, and by late spring / summer the leaves are taller and create a vine for these purple flowers. Last year, I broke a piece off of the plant, and actually made a seperate pot so I could have two.
I have no idea what this plant is. I can take more pictures as it blooms, but does anybody have any ideas? It comes back every year, very faithful and easy to maintain.
Edited to Add: So, I put this post on pinterest asking for help of what this thing is... and literally seconds later, had the answer! I have only been trying to figure it out for 6 years now! It's a Autumn Joy Sedum! Thank you pinterest!! :)
I have no idea what this plant is. I can take more pictures as it blooms, but does anybody have any ideas? It comes back every year, very faithful and easy to maintain.
Edited to Add: So, I put this post on pinterest asking for help of what this thing is... and literally seconds later, had the answer! I have only been trying to figure it out for 6 years now! It's a Autumn Joy Sedum! Thank you pinterest!! :)
Friday, February 24, 2012
Improvements
On Tuesday, Keith was finally extubated. He did well with that. Right after the extubation, he did talk to us a little bit. By evening though, he was in a really bad mood, and apparently going through major withdrawal from all of the sedatives. I spent hours with him trying to get him to talk, or sit up-- do anything...nothing worked.
Wednesday, it was similar. He was very resistant. He was allowed to drink, but refused. TEN HOURS I tried to convince him to talk to me, play with me, offered him any toy in the world. Nothing. Dead Silent. Occasional smile, but for the most part-- just NOT him.
By Wednesday evening, I had it in my head that he was going to be like this forever. That my Keith was gone,and some other Keith replaced him. I guess it was lack of sleep, being too worried-- I don't know-- but I started to begin preparing myself for WHAT IF this were how he was going to be. Lethargic, unhappy, laying in a lumpy ball on a bed, forever...not caring for anything anymore.
Late, late Wednesday night, Keith was moved out of ICU, and onto the main kid's floor. Of course, I had stuck around ALL day waiting for this move, and about 20 minutes after I had gone home, I get the call that he had been moved. Figures.
On Wednesday, I had also been informed that Keith could potentially come home on Friday. ENT wanted to keep an eye on his neck for a little longer, to be sure there were no leaks in his trachea. Also, we still had an issue with him drinking, and they obviously wouldn't discharge him until he drank. Nurses and staff told me most likely his "attitude" was due to sedatives still being in his system (not necessarily withdrawal as we had seen on Tuesday). Also, that he could just be scared because it was a traumatic thing that happened to him. I guess they had seen other kids like this. I didn't want to believe it-- because ANY time Keith had anything in the passed, he never acted in this way!
Thursday morning, I made several phone calls to his school, his doctors, the nurses, and began to research sedative and opioid withdrawal. I was sure, something was wrong with Keith.
By the time I got to the hospital.... Keith was suddenly almost back to Normal! They had him up in a chair watching tv, drinking juice, and talking! I was shocked!
All day yesterday (Thursday), it was a great day. He ate very well, his plate and even some of the food I brought up from Subway and a pizza place in here. He's been playing his games too. He's been using the potty pretty good again as well. He still seems to tense up and not talk every once in a while-- but I'm not so worried anymore, at all about this.
Today is Friday, and the hospital is preparing our discharge. YAY! Keith seems to be very excited, (maybe a little confused too) to go home!
Keith will need to have a repeat bronchoscopy in 3 weeks to check the new airway, and I pray so hard that the next time is outpatient, like we are familiar with many times before.
I'm grateful that he is doing well. Maybe also slightly embarrassed that I flipped out sooo fast about his responsiveness this week. The medical staff here was very correct in all they told me. They told me most likely when he was moved from ICU we would see real improvement, super fast. That is for sure what happened.
I don't regret asking anybody that would listen for help over this. Many times parent's do not stand up for their child and ask questions when it comes to medical things. I remember the very first day I had Keith, medical staff told me NEVER forget you are the spokes person for your child. Do not be afraid to ask questions. I do believe that is why I'm able to get through so many things with Keith. I ask as many questions as needed, I'm not afraid to help with his medical things that I'm allowed to help with, and many times if I'm not happy with their answers, I will keep asking!
Wednesday, it was similar. He was very resistant. He was allowed to drink, but refused. TEN HOURS I tried to convince him to talk to me, play with me, offered him any toy in the world. Nothing. Dead Silent. Occasional smile, but for the most part-- just NOT him.
By Wednesday evening, I had it in my head that he was going to be like this forever. That my Keith was gone,and some other Keith replaced him. I guess it was lack of sleep, being too worried-- I don't know-- but I started to begin preparing myself for WHAT IF this were how he was going to be. Lethargic, unhappy, laying in a lumpy ball on a bed, forever...not caring for anything anymore.
Late, late Wednesday night, Keith was moved out of ICU, and onto the main kid's floor. Of course, I had stuck around ALL day waiting for this move, and about 20 minutes after I had gone home, I get the call that he had been moved. Figures.
On Wednesday, I had also been informed that Keith could potentially come home on Friday. ENT wanted to keep an eye on his neck for a little longer, to be sure there were no leaks in his trachea. Also, we still had an issue with him drinking, and they obviously wouldn't discharge him until he drank. Nurses and staff told me most likely his "attitude" was due to sedatives still being in his system (not necessarily withdrawal as we had seen on Tuesday). Also, that he could just be scared because it was a traumatic thing that happened to him. I guess they had seen other kids like this. I didn't want to believe it-- because ANY time Keith had anything in the passed, he never acted in this way!
Thursday morning, I made several phone calls to his school, his doctors, the nurses, and began to research sedative and opioid withdrawal. I was sure, something was wrong with Keith.
By the time I got to the hospital.... Keith was suddenly almost back to Normal! They had him up in a chair watching tv, drinking juice, and talking! I was shocked!
All day yesterday (Thursday), it was a great day. He ate very well, his plate and even some of the food I brought up from Subway and a pizza place in here. He's been playing his games too. He's been using the potty pretty good again as well. He still seems to tense up and not talk every once in a while-- but I'm not so worried anymore, at all about this.
Today is Friday, and the hospital is preparing our discharge. YAY! Keith seems to be very excited, (maybe a little confused too) to go home!
Keith will need to have a repeat bronchoscopy in 3 weeks to check the new airway, and I pray so hard that the next time is outpatient, like we are familiar with many times before.
I'm grateful that he is doing well. Maybe also slightly embarrassed that I flipped out sooo fast about his responsiveness this week. The medical staff here was very correct in all they told me. They told me most likely when he was moved from ICU we would see real improvement, super fast. That is for sure what happened.
I don't regret asking anybody that would listen for help over this. Many times parent's do not stand up for their child and ask questions when it comes to medical things. I remember the very first day I had Keith, medical staff told me NEVER forget you are the spokes person for your child. Do not be afraid to ask questions. I do believe that is why I'm able to get through so many things with Keith. I ask as many questions as needed, I'm not afraid to help with his medical things that I'm allowed to help with, and many times if I'm not happy with their answers, I will keep asking!
Monday, February 20, 2012
More curve balls
Well, we had hoped that Keith was going to be off sedation today, and the breathing machine. We got to the hospital this morning, and the doctors had thought it would be best to wait another 24hrs before taking him off equipment, and off sedation. Keith has a partially collapsed right lung, this can be common on a vent, and with laying because fluid (mucus plugs) can settle, and the patient isn't coughing them out. They were repositioning Keith's body today, and doing a lot of Chest PT to help "clear" it out--- and so it doesn't get larger or turn into pneumonia. Specifically, the infection growing in his lungs, causing the collapse is MRSA. He is now on an additional antibiotic to help the infection.
The doctors say that if the collapse/infection does not get any bigger, or keith doesn't require anymore additional oxygen, or ventilator changes OR does not desat tonight, they may still go ahead and pull the breathing tube out tomorrow. If, any of these things change, he would need to stay on it longer.
We are disappointed that he couldn't be up today, but we understand why. Hopefully, IF he does get to get off things tomorrow, it will help him because then he can cough up whatever is in the lungs by himself, which will get the infection out.
They had weened him off a bit of sedation today (in preparation of extubating him) but, by this evening we had to have them increase it. In the morning, he was answering yes or no questions by nodding and shaking his head. It was neat to communicate with him! We asked him if he was cold, hurting, hungry-- things like that. By night time tho, he was beyond frustrated, began thrashing his body, crying, and just not comfortable. At that point, it was getting dangerous, in fear that he would self extubate! We asked the nurses/doctors to increase sedation, and they agreed, it just wasn't safe for him to be that way. They will begin to ween him again tomorrow, in preparation again for extubation.
Things are definitely day-by-day here. We pray and hope things are in better standing tomorrow, but you just never know what will happen.
Keith is VERY strong. I know he will be okay. It's just very stressful to have 2 kids, and have our family divided. I'm working on child care the rest of the week, as my husband needs to go back to work, and my babysitter back to school. I believe I have a plan lined up, but I don't want to be to dead-set on something, because there are always curve balls in life!
Thanks to everyone that is praying for us. We appreciate it, more than I could ever describe.
The doctors say that if the collapse/infection does not get any bigger, or keith doesn't require anymore additional oxygen, or ventilator changes OR does not desat tonight, they may still go ahead and pull the breathing tube out tomorrow. If, any of these things change, he would need to stay on it longer.
We are disappointed that he couldn't be up today, but we understand why. Hopefully, IF he does get to get off things tomorrow, it will help him because then he can cough up whatever is in the lungs by himself, which will get the infection out.
They had weened him off a bit of sedation today (in preparation of extubating him) but, by this evening we had to have them increase it. In the morning, he was answering yes or no questions by nodding and shaking his head. It was neat to communicate with him! We asked him if he was cold, hurting, hungry-- things like that. By night time tho, he was beyond frustrated, began thrashing his body, crying, and just not comfortable. At that point, it was getting dangerous, in fear that he would self extubate! We asked the nurses/doctors to increase sedation, and they agreed, it just wasn't safe for him to be that way. They will begin to ween him again tomorrow, in preparation again for extubation.
Things are definitely day-by-day here. We pray and hope things are in better standing tomorrow, but you just never know what will happen.
Keith is VERY strong. I know he will be okay. It's just very stressful to have 2 kids, and have our family divided. I'm working on child care the rest of the week, as my husband needs to go back to work, and my babysitter back to school. I believe I have a plan lined up, but I don't want to be to dead-set on something, because there are always curve balls in life!
Thanks to everyone that is praying for us. We appreciate it, more than I could ever describe.
Saturday, February 18, 2012
Friday, February 17, 2012
Update on Keith 2/17/12
As of tonight, Keith is running a fever of 102. They are working on finding the source of the fever (infection or pneumonia). He is still fighting the sedation medications pretty good off and on. Kevin and I were talking to him tonight, and he definitely could hear us based on his heart rate rising, and trying to move himself. We will be checking in with the hospital over night to see how his fever is going. Hopefully, he isn't getting a major bug right now!
Thursday, February 16, 2012
Life hands you curve balls.
Sometimes life will hand you curve balls. Sometimes these curve balls are good things, sometimes they are enough to cause a nervous break down. I think it's safe to say I'm at the breaking stage.
Keith has been having coughing spells for months now. Pediatrician thought it was a cold, and he did have a cold-- we all did. When the cold left, he started this strange "gasp". Again took to the dr, and they couldn't find anything. The school had been calling on a daily basis-- concerned with his breathing. I again take to the dr. This has been a repetitive process. I called ENT last week and asked them to take a look because the school insisted this was asthma (which he does have) but the pediatrician said it wasn't asthma. I got sick of the run around so I went to ENT and they thought the noises were a "habit", but since the gasping increased during gym/physical activity they wanted to check his airway via bronchoscopy. They wanted to make sure that the rebuilt airway from 2009 was holding up, because sometimes it can get scarring. They planned to take a look, and do a balloon dilation if needed. During Keith's trach times, he's had these procedures in the past (6 time to be exact) and they are always pretty quick and easy---back home in a matter of hours. I planned my day (and the kid's day) according to our previous procedures. Always pretty simple! Anyway, they go in to look today-- and to all of our surprise his trachea was BENT/crooked, off track and had a HOLE in it!! So, they did emergency surgery to repair it.
It has been a crazy day. My husband job has him near and far during the week. Thankfully, he had a close run today and was able to get home tonight. I see how much harder it is to have 2 kids when one is REALLY sick or having a huge procedure! For the most part, I function just fine with 2 kids and are standard day to day schedule. We have a great routine here-- and even if I'm a "single mom" during the week, we have a flow the house that works. Throw me a curve ball like this though, and I'll admit, I'm human!
As of tonight, Keith is being VERY heavily sedated at this point. He has tried to pull the breathing tube and all equipment off several times today. Apparently he has a very high tolerance to medications due to so many previous procedures. Right now, the tube is acting as a stint to the airway, and he needs to be still while it heals. The machine is doing a lot of breathing for him at this point, but since on such high doses of sedation, that is to be expected. They plan to start feeding by tube either tonight or in the morning. As for me, I don't think I've quite overcome the shock of this day. Just when I think there are no more tears that can come out, more come.
The positive news is-- his stoma (hole in neck that he had from his trach) is now completely closed, and the initial airway surgery they did in 2009 is beautiful and holding up wonderfully!
I'm going to try to update here (as well as facebook) as much as possible so that I can keep everyone in the loop.
Keith has been having coughing spells for months now. Pediatrician thought it was a cold, and he did have a cold-- we all did. When the cold left, he started this strange "gasp". Again took to the dr, and they couldn't find anything. The school had been calling on a daily basis-- concerned with his breathing. I again take to the dr. This has been a repetitive process. I called ENT last week and asked them to take a look because the school insisted this was asthma (which he does have) but the pediatrician said it wasn't asthma. I got sick of the run around so I went to ENT and they thought the noises were a "habit", but since the gasping increased during gym/physical activity they wanted to check his airway via bronchoscopy. They wanted to make sure that the rebuilt airway from 2009 was holding up, because sometimes it can get scarring. They planned to take a look, and do a balloon dilation if needed. During Keith's trach times, he's had these procedures in the past (6 time to be exact) and they are always pretty quick and easy---back home in a matter of hours. I planned my day (and the kid's day) according to our previous procedures. Always pretty simple! Anyway, they go in to look today-- and to all of our surprise his trachea was BENT/crooked, off track and had a HOLE in it!! So, they did emergency surgery to repair it.
It has been a crazy day. My husband job has him near and far during the week. Thankfully, he had a close run today and was able to get home tonight. I see how much harder it is to have 2 kids when one is REALLY sick or having a huge procedure! For the most part, I function just fine with 2 kids and are standard day to day schedule. We have a great routine here-- and even if I'm a "single mom" during the week, we have a flow the house that works. Throw me a curve ball like this though, and I'll admit, I'm human!
As of tonight, Keith is being VERY heavily sedated at this point. He has tried to pull the breathing tube and all equipment off several times today. Apparently he has a very high tolerance to medications due to so many previous procedures. Right now, the tube is acting as a stint to the airway, and he needs to be still while it heals. The machine is doing a lot of breathing for him at this point, but since on such high doses of sedation, that is to be expected. They plan to start feeding by tube either tonight or in the morning. As for me, I don't think I've quite overcome the shock of this day. Just when I think there are no more tears that can come out, more come.
The positive news is-- his stoma (hole in neck that he had from his trach) is now completely closed, and the initial airway surgery they did in 2009 is beautiful and holding up wonderfully!
I'm going to try to update here (as well as facebook) as much as possible so that I can keep everyone in the loop.
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