I love this little boy!
Thursday, August 29, 2013
watermelon
Keagan LOVES watermelon. The bigger the piece the better. He was so excited to get one at the apple orchard. He has been eating it everyday and keeps asking how much he has left. Too cute!
new wheels
Thursday August 29, 2013
Taevon go this new wheelchair today!! He loves it. He was so excited when I put him in it and he just kept smiling. It is much more comfortable than the one he had and it fits him so much better. He is such a sweet little boy. I never knew how much a smile could melt my heart until my boys.
Taevon go this new wheelchair today!! He loves it. He was so excited when I put him in it and he just kept smiling. It is much more comfortable than the one he had and it fits him so much better. He is such a sweet little boy. I never knew how much a smile could melt my heart until my boys.
cross country
Nicholas is running cross country for his school this year. He is so excited for his first race and is having so much fun. He said "my coach said to find my pace. Mom, I never could find it" He is so cute. I can't wait to see him in his first race next month.
I am going to park closer next week so I can get some better pictures. I am so proud of Nick.
I am going to park closer next week so I can get some better pictures. I am so proud of Nick.
new bed
Tuesday August 27, 2013
Aaron got a new bed. It is going to be so good for him. It is padded so I don't have to worry about him hurting himself during a seizure. It also allows me to elevate the head to decrease the risk of aspiration. I am looking into buying some sheets that are made of lycra to give him more sensory input in hopes that he will leave his feeding tube in during the night. It would be wonderful if he would start sleeping for longer periods of time. Right now he is getting up about every 1.5 to 2 hours and is up for at least an hour each time. He usually pulls his tube out a few times a night which makes for multiple pajama and bedding changes. I am exhausted.
Aaron got a new bed. It is going to be so good for him. It is padded so I don't have to worry about him hurting himself during a seizure. It also allows me to elevate the head to decrease the risk of aspiration. I am looking into buying some sheets that are made of lycra to give him more sensory input in hopes that he will leave his feeding tube in during the night. It would be wonderful if he would start sleeping for longer periods of time. Right now he is getting up about every 1.5 to 2 hours and is up for at least an hour each time. He usually pulls his tube out a few times a night which makes for multiple pajama and bedding changes. I am exhausted.
big boy
Tuesday august 27, 2013
Aaron saw Dr C this morning. He is still gaining lots of weight. Dr C said Aaron goes through periods where he gains weight uncontrollably and then loses weight just as fast. He is taking it slow decreasing his calories. He said everything else looked good. He was glad to see Aaron so alert. He will see him again in a few weeks.
Aaron saw Dr C this morning. He is still gaining lots of weight. Dr C said Aaron goes through periods where he gains weight uncontrollably and then loses weight just as fast. He is taking it slow decreasing his calories. He said everything else looked good. He was glad to see Aaron so alert. He will see him again in a few weeks.
preschool
Monday August 26, 2013
Keagan got to meet his teacher and see his classroom tonight. He was so excited that his bag is blue. He is looking forward to decorating it this weekend. He knows his teacher and is very excited to start school this year. I am looking forward to seeing all that he will learn this year.
Keagan got to meet his teacher and see his classroom tonight. He was so excited that his bag is blue. He is looking forward to decorating it this weekend. He knows his teacher and is very excited to start school this year. I am looking forward to seeing all that he will learn this year.
Wednesday, August 21, 2013
Aqua therapy
Wednesday August 21, 2013
Taevon had Aqua Therapy today. He loves the water. He smiled a lot and was even kicking. He loved having therapy with a friend this week.
Taevon had Aqua Therapy today. He loves the water. He smiled a lot and was even kicking. He loved having therapy with a friend this week.
not a fan of the swim collar
back to school night
Tuesday August 20, 2013
Tonight was Nick's back to school night. He LOVED giving us a tour of his class and school. He was very excited to show us his desk. (he has always had tables until this year) He had fun seeing all of his friends and made sure he saw Mrs C (1st grade) and Mrs L (kindergarten) before we left. He LOVES his school. He has decided to do Cross Country this year and he starts next Tuesday. I can't wait to see him run. He is also going to play basketball again and that should be starting soon. I love seeing him try new things. I still can't believe he is in the 2nd grade but I am excited to see all that he will learn this year.
Tonight was Nick's back to school night. He LOVED giving us a tour of his class and school. He was very excited to show us his desk. (he has always had tables until this year) He had fun seeing all of his friends and made sure he saw Mrs C (1st grade) and Mrs L (kindergarten) before we left. He LOVES his school. He has decided to do Cross Country this year and he starts next Tuesday. I can't wait to see him run. He is also going to play basketball again and that should be starting soon. I love seeing him try new things. I still can't believe he is in the 2nd grade but I am excited to see all that he will learn this year.
6 months!!
Tuesday August 20, 2013
Taevon saw Dr M (GI) today. He has lost a pound and now weighs 58 pounds. He is still in the 94 percentile and Dr M would like to see him closer to the 50th percentile. He is doing so well that he adjusted some of his meds. We are going to try and take him off the Senexon and only use Miralax so we are down to 4mls once a day. He also wants to see if he can go without Omperazole. He said his button looked good although I need to change it in the next few weeks. He doesn't need to go back for 6 months!!
Taevon saw Dr M (GI) today. He has lost a pound and now weighs 58 pounds. He is still in the 94 percentile and Dr M would like to see him closer to the 50th percentile. He is doing so well that he adjusted some of his meds. We are going to try and take him off the Senexon and only use Miralax so we are down to 4mls once a day. He also wants to see if he can go without Omperazole. He said his button looked good although I need to change it in the next few weeks. He doesn't need to go back for 6 months!!
Monday, August 19, 2013
blood pressure
Monday August 19, 2013
Taevon saw Dr C this morning for a blood pressure check. He is on Amlodipine but so far it hasn't been an issue. Today it was elevated. Dr C didn't wan to jump to any conclusions so he left his meds the same and will recheck Sept 17th. I am hoping that it will be fine at his next appointment.
Taevon saw Dr C this morning for a blood pressure check. He is on Amlodipine but so far it hasn't been an issue. Today it was elevated. Dr C didn't wan to jump to any conclusions so he left his meds the same and will recheck Sept 17th. I am hoping that it will be fine at his next appointment.
Friday, August 16, 2013
follow up with surgeon
Friday August 16, 2013
Aaron saw Dr S this morning. He was very pleased with how he looks. He has gained more weight even though Dr C decreased his amount of calories. We talked about switching out his BARD to a Mic Key but we are going to try a binder first. We have to figure something out because he doesn't sleep all night and he pulls out his tube whenever he is awake. I am going on 3 hours a sleep a night and I'm a little grouchy. He has low blood sugar and diabetes insipidus so he has to get just the right amount of formula and water. He can easily get dehydrated by pulling out his tube because his body doesn't keep any liquid. Today was a good say and he had fairly good head control, even the nurse noticed. These seizures take so much out of him and leave him weak for long periods of time. Hopefully even with the other boys in school we can still keep away from any germs so we can stay out of the hospital. No more appointments with Dr S until his tube needs changed. That's 1 less appointment a month!! We usually average 4-5 Dr appointments a month plus all of their therapy appointments. We are always on the go!!
Aaron saw Dr S this morning. He was very pleased with how he looks. He has gained more weight even though Dr C decreased his amount of calories. We talked about switching out his BARD to a Mic Key but we are going to try a binder first. We have to figure something out because he doesn't sleep all night and he pulls out his tube whenever he is awake. I am going on 3 hours a sleep a night and I'm a little grouchy. He has low blood sugar and diabetes insipidus so he has to get just the right amount of formula and water. He can easily get dehydrated by pulling out his tube because his body doesn't keep any liquid. Today was a good say and he had fairly good head control, even the nurse noticed. These seizures take so much out of him and leave him weak for long periods of time. Hopefully even with the other boys in school we can still keep away from any germs so we can stay out of the hospital. No more appointments with Dr S until his tube needs changed. That's 1 less appointment a month!! We usually average 4-5 Dr appointments a month plus all of their therapy appointments. We are always on the go!!
I LOVE this smile
Wednesday, August 14, 2013
2nd grade
Wednesday August 14, 2013
Today was Nick's first day of school. I can't believe he is in the 2nd grade. Time is going way to fast for me. He was so excited to see all of his friends and meet his new teacher. He was already asking what he was going to learn about this year. I was hoping to join the PTO and volunteer at the school, but since Aaron and Tae are being home schooled I am not sure I am going to be able to fit everything in my schedule. I will just have to wait and see. I am looking forward to seeing all that Nick will accomplish this year.
Today was Nick's first day of school. I can't believe he is in the 2nd grade. Time is going way to fast for me. He was so excited to see all of his friends and meet his new teacher. He was already asking what he was going to learn about this year. I was hoping to join the PTO and volunteer at the school, but since Aaron and Tae are being home schooled I am not sure I am going to be able to fit everything in my schedule. I will just have to wait and see. I am looking forward to seeing all that Nick will accomplish this year.
He LOVED his teacher and had a great day
all ready
Tuesday August 13, 2013
Nick is already for school.
I am going to miss having him home during the day. He is so funny and talks nonstop. It is going to be so quiet without him.
Nick is already for school.
I am going to miss having him home during the day. He is so funny and talks nonstop. It is going to be so quiet without him.
Tuesday, August 13, 2013
Aaron's neuro appointment
Tuesday August 13, 2013
Aaron saw Dr O this morning. He was so happy to see him so alert and feeling better. He thinks his increase in seizures had to do with the virus that landed him in the hospital for 8 days. He continues to have seizures but they are so much smaller and shorter in length. He wants to see him again in 3 months, earlier if he starts to have more seizures. I am so thankful for good appointments!
Keagan ha so much fun playing in the fun mirror in the waiting room I had a hard time getting him to come back to the exam room.
Aaron saw Dr O this morning. He was so happy to see him so alert and feeling better. He thinks his increase in seizures had to do with the virus that landed him in the hospital for 8 days. He continues to have seizures but they are so much smaller and shorter in length. He wants to see him again in 3 months, earlier if he starts to have more seizures. I am so thankful for good appointments!
Keagan ha so much fun playing in the fun mirror in the waiting room I had a hard time getting him to come back to the exam room.
Sunday, August 11, 2013
family
Thursday August 8, 2013
Taevon's adoption was finalized today!! I couldn't love this little angel anymore than I already do. He is the sweetest little boy ever. He has changed so much in the last year. He interacts more with us and is doing so much more in therapy. His ROM and strength have increased since he has been with us. I can't wait to see all that he will accomplish.
The kids had so much fun in the courthouse. They even got to sit with our attorney at his table. They were very excited. to see the judge. When we were done Keagan said "I was so quiet. I didn't talk so now I don't have to go to jail" He is too funny. He said Nick told him he thought that would happen if they talked. Love these kids!
I am the luckiest mommy ever. I have 4 amazing little boys and I get to stay home with them everyday. Life doesn't get any better than this.
Taevon's adoption was finalized today!! I couldn't love this little angel anymore than I already do. He is the sweetest little boy ever. He has changed so much in the last year. He interacts more with us and is doing so much more in therapy. His ROM and strength have increased since he has been with us. I can't wait to see all that he will accomplish.
The kids had so much fun in the courthouse. They even got to sit with our attorney at his table. They were very excited. to see the judge. When we were done Keagan said "I was so quiet. I didn't talk so now I don't have to go to jail" He is too funny. He said Nick told him he thought that would happen if they talked. Love these kids!
Taevon Isaiah!!
I am the luckiest mommy ever. I have 4 amazing little boys and I get to stay home with them everyday. Life doesn't get any better than this.
Friday, August 9, 2013
follow up with Dr C
Thursday August 8, 2013
Aaron had his follow up appointment with Dr C this morning. He said heart, lungs, ears and throat look good. He said it was just a virus, but that he looks great. Usually I am very relaxed after a good report with Dr C, but not this time. I know there is no way to predict when Aaron will get sick. Its just that after a good Drs appointment I usually have a few days where I worry a little less and sleep a little better. After the last appointment Friday July 26 Aaron got so sick Sunday July 28th. This time I am afraid to let down my guard with Aaron. I check on him all through the night because when he gets sick he gets VERY sick VERY fast. I know how lucky we are. No matter how sick Aaron is there is always another child much worse than Aaron. I am so glad that he is doing better I am just emotionally and physically drained.
Aaron had his follow up appointment with Dr C this morning. He said heart, lungs, ears and throat look good. He said it was just a virus, but that he looks great. Usually I am very relaxed after a good report with Dr C, but not this time. I know there is no way to predict when Aaron will get sick. Its just that after a good Drs appointment I usually have a few days where I worry a little less and sleep a little better. After the last appointment Friday July 26 Aaron got so sick Sunday July 28th. This time I am afraid to let down my guard with Aaron. I check on him all through the night because when he gets sick he gets VERY sick VERY fast. I know how lucky we are. No matter how sick Aaron is there is always another child much worse than Aaron. I am so glad that he is doing better I am just emotionally and physically drained.
She gets it
Wednesday August 7, 2013
I have met a lot of people with all of our therapy and Dr appointments. It never ceases to amaze me the things people say to ME and to their children. They rarely talk to Taevon and Aaron. Some will pull their kids back as if they can catch something from the boys. Others have told me that they feel sorry for me and the kids. I feel like the luckiest person to have these amazing kids in my life. Some people just pat them on the head and say Hi as if they don't think they are worth anymore of their time. Who greets people by patting them on the head? I have met lots of parents with special needs kids but most of them have only wanted to complain. Don't get me wrong, its really hard with 4 little boys and 3 of them with special needs. We get lots of stares when I take the boys out alone. Some people barely open doors and squeeze through so they don't have to hold the door. Kids point and some adults do too and we wonder why we have a bully problem. I am also exhausted by the end of the day and sometimes I do look at the clock hoping it is bedtime. And sometimes I feel alone. Not everyone really wants to hear about the boys and that makes me sad.
Anyways I met I woman at therapy today and she was just what I needed. Her little boy has therapy the same time as Taevon. We started talking and asking each other about the kids and she gets it. We talked about all kinds if things related to the kids. We both acknowledged that its hard but so rewarding. That nobody knows the potential of these sweet kids but God. That they deserve the same treatment as any other child (she also has a child that is not special needs). We both wished that people would talk to the kids like they are kids and not as if they don't understand anything. It was so nice to have someone to talk to that understands.
My boys understand way more than anyone knows. They may not be able to talk but they communicate so well. If people really got to know them and invested any time with them they would see how amazing they are. Aaron is the funniest little boy ever. He has such a sense of humor. He also knows people. If he knows they aren't really interested in him he just shuts down. On the other hand if he knows they genuinely care he seeks them out. He may wave or smile but he only really interacts with those that have spent time getting to know him. Taevon is the sweetest little boy. He loves to snuggle and be held. He smiles and gets excited when he sees people that play with him or that have spent time with him. He also shows when he is nervous when he gets around people that he is not as familiar with by drooling. Its sad to see the people that he drools around. Keagan is my wild child. Sometimes he gets overstimulated and sometimes he craves stimulation. I have to be very consistent with him and sometimes others think I am too hard on him. I hold him accountable for his actions and if it causes a tantrum we work through it. He does get extra chances and more warnings but he does have to follow the rules and manage his feelings appropriately. I firmly believe that kids who are constantly given excuses for poor behavior grow up to have behavior problems as adults. Sometimes I think people give them excuses so they don't have to parent. Its easier to let them act out and say they cant help it then to work through all of the negative behaviors.
Now we are needing to explain and answer questions from Nicholas. (7 years old) He sees everything. He continually asks us why some people don't talk to the boys or why some kids never play with the boys. The questions are more frequent and a lot harder to answer. He is a smart little boy and our answers are not always accepted. He is realizing how people act towards the boys. He is such a caring little boy. He stands up to bullies and doesn't let kids get bullied around him. He never teases or makes fun of anyone and is the first to stand up for them.
We have learned so much form these kids. I feel sorry for those who have not taken the time to get to really know these boys. They are missing out on so much. I feel so lucky to have been blessed with such amazing boys. I can't imagine my life without them. They are my whole world.
I have met a lot of people with all of our therapy and Dr appointments. It never ceases to amaze me the things people say to ME and to their children. They rarely talk to Taevon and Aaron. Some will pull their kids back as if they can catch something from the boys. Others have told me that they feel sorry for me and the kids. I feel like the luckiest person to have these amazing kids in my life. Some people just pat them on the head and say Hi as if they don't think they are worth anymore of their time. Who greets people by patting them on the head? I have met lots of parents with special needs kids but most of them have only wanted to complain. Don't get me wrong, its really hard with 4 little boys and 3 of them with special needs. We get lots of stares when I take the boys out alone. Some people barely open doors and squeeze through so they don't have to hold the door. Kids point and some adults do too and we wonder why we have a bully problem. I am also exhausted by the end of the day and sometimes I do look at the clock hoping it is bedtime. And sometimes I feel alone. Not everyone really wants to hear about the boys and that makes me sad.
Anyways I met I woman at therapy today and she was just what I needed. Her little boy has therapy the same time as Taevon. We started talking and asking each other about the kids and she gets it. We talked about all kinds if things related to the kids. We both acknowledged that its hard but so rewarding. That nobody knows the potential of these sweet kids but God. That they deserve the same treatment as any other child (she also has a child that is not special needs). We both wished that people would talk to the kids like they are kids and not as if they don't understand anything. It was so nice to have someone to talk to that understands.
My boys understand way more than anyone knows. They may not be able to talk but they communicate so well. If people really got to know them and invested any time with them they would see how amazing they are. Aaron is the funniest little boy ever. He has such a sense of humor. He also knows people. If he knows they aren't really interested in him he just shuts down. On the other hand if he knows they genuinely care he seeks them out. He may wave or smile but he only really interacts with those that have spent time getting to know him. Taevon is the sweetest little boy. He loves to snuggle and be held. He smiles and gets excited when he sees people that play with him or that have spent time with him. He also shows when he is nervous when he gets around people that he is not as familiar with by drooling. Its sad to see the people that he drools around. Keagan is my wild child. Sometimes he gets overstimulated and sometimes he craves stimulation. I have to be very consistent with him and sometimes others think I am too hard on him. I hold him accountable for his actions and if it causes a tantrum we work through it. He does get extra chances and more warnings but he does have to follow the rules and manage his feelings appropriately. I firmly believe that kids who are constantly given excuses for poor behavior grow up to have behavior problems as adults. Sometimes I think people give them excuses so they don't have to parent. Its easier to let them act out and say they cant help it then to work through all of the negative behaviors.
Now we are needing to explain and answer questions from Nicholas. (7 years old) He sees everything. He continually asks us why some people don't talk to the boys or why some kids never play with the boys. The questions are more frequent and a lot harder to answer. He is a smart little boy and our answers are not always accepted. He is realizing how people act towards the boys. He is such a caring little boy. He stands up to bullies and doesn't let kids get bullied around him. He never teases or makes fun of anyone and is the first to stand up for them.
We have learned so much form these kids. I feel sorry for those who have not taken the time to get to really know these boys. They are missing out on so much. I feel so lucky to have been blessed with such amazing boys. I can't imagine my life without them. They are my whole world.
Monday, August 5, 2013
back to school
Monday August 5, 2013
Monday August 5, 2013
Nicholas registered for school today. I can't believe my baby is going to be in the 2nd grade. He is growing up so fast. He was so excited to see which of his friends were going to be in class this year. Nicholas is the sweetest little boy. He was so happy when he found out that a girl in his class wasn't in the same class with a bully. He was always worried about her last year and is so happy she will have a good year. I am so proud of the person he is becoming.
Monday August 5, 2013
Nicholas registered for school today. I can't believe my baby is going to be in the 2nd grade. He is growing up so fast. He was so excited to see which of his friends were going to be in class this year. Nicholas is the sweetest little boy. He was so happy when he found out that a girl in his class wasn't in the same class with a bully. He was always worried about her last year and is so happy she will have a good year. I am so proud of the person he is becoming.
just a virus
Sunday August 4, 2013
Aaron is back. They turned off his oxygen at 4am and he is doing great. He woke up in such a great mood. I am so glad that he is feeling better. Dr S came and saw him and said he looks good. He said it was just a virus. His ears, throat and lungs were good so he was discharged. They took out his PICC line and he did fine. The nurses couldn't believe how good he was. I am so glad that they were able to see the real Aaron. So many times they see all of his medical needs and expect nothing from him. This time they were able to see the real Aaron and everyone fell in love with him. He was so excited to leave. He waved and squealed the whole way down the hall.
Aaron is back. They turned off his oxygen at 4am and he is doing great. He woke up in such a great mood. I am so glad that he is feeling better. Dr S came and saw him and said he looks good. He said it was just a virus. His ears, throat and lungs were good so he was discharged. They took out his PICC line and he did fine. The nurses couldn't believe how good he was. I am so glad that they were able to see the real Aaron. So many times they see all of his medical needs and expect nothing from him. This time they were able to see the real Aaron and everyone fell in love with him. He was so excited to leave. He waved and squealed the whole way down the hall.
big steps
Saturday August 3, 2013
Aaron is doing so much better. At 6am respiratory turned his oxygen down to 7 liters at 45% and he did well. Dr S came and saw him this morning. He said he would like to see the low grade fever go away. He wants him to start sitting up more to see if it helps with his oxygen levels.
9am respiratory decreased his oxygen to 6 liters at 40%. He tolerated it well. His temp was 98.8
12:30pm temp was 97.8
2pm respiratory decreased his oxygen to 5 liters @ 35%. He did fine.
5pm temp 99.1 oxygen decreased to 5 liters @ 25% still tolerating it well
8pm Aaron was changed to wall air. I was so nervous. He had so many problems changing from high flow to wall air in March, but he did great. He is on 1 liter.
He has been very alert today and back to himself. He is moving around in the bed and wanting to sit up more and for longer periods of time. He had a temp earlier today but has been fever free ever since. He found the buttons on his bed. He was so excited because he loves it when the nurses move his bed up and down. He would push them and laugh. He is adorable!
11:30 pm temp 97.8 and the nurse changed his oxygen to 1/2 liter. He is still tolerating it well. We are FINALLY heading in the right direction. He s such a fighter.
1:30am breathing treatment. Afterwards I was covering him up and noticed his blanket was wet. I checked his diaper and it was dry. It was his feeding tube. He had pulled it out and was soaked. I am so glad that he woke up during the treatment or I wouldn't have noticed his tube was out. That would have caused another issue.
Aaron is doing so much better. At 6am respiratory turned his oxygen down to 7 liters at 45% and he did well. Dr S came and saw him this morning. He said he would like to see the low grade fever go away. He wants him to start sitting up more to see if it helps with his oxygen levels.
9am respiratory decreased his oxygen to 6 liters at 40%. He tolerated it well. His temp was 98.8
12:30pm temp was 97.8
2pm respiratory decreased his oxygen to 5 liters @ 35%. He did fine.
5pm temp 99.1 oxygen decreased to 5 liters @ 25% still tolerating it well
8pm Aaron was changed to wall air. I was so nervous. He had so many problems changing from high flow to wall air in March, but he did great. He is on 1 liter.
He has been very alert today and back to himself. He is moving around in the bed and wanting to sit up more and for longer periods of time. He had a temp earlier today but has been fever free ever since. He found the buttons on his bed. He was so excited because he loves it when the nurses move his bed up and down. He would push them and laugh. He is adorable!
11:30 pm temp 97.8 and the nurse changed his oxygen to 1/2 liter. He is still tolerating it well. We are FINALLY heading in the right direction. He s such a fighter.
1:30am breathing treatment. Afterwards I was covering him up and noticed his blanket was wet. I checked his diaper and it was dry. It was his feeding tube. He had pulled it out and was soaked. I am so glad that he woke up during the treatment or I wouldn't have noticed his tube was out. That would have caused another issue.
Saturday, August 3, 2013
increase in oxygen
Friday August 2, 2013
Saw Dr K this morning. She was sorry he was still here. The plan is to get him off the oxygen and breathing treatments so we can go home. He continues to be more alert and awake for longer periods of time. I think he is sleeping later in the morning because he is getting his night meds later than he does at home. He loves the new toys I got for him and is moving around a lot more in bed. He is still having diarrhea but the Dr thinks its from the antibiotics.
At 4pm he had a breathing treatment. The respiratory therapist turned his oxygen from 5 liters at 50% to 5 liters at 35%. His sats dropped and stayed at 76. They increased it to 40% and he tolerated that much better. Thankful for small steps with Aaron.
Midnight he had another treatment. They tried to turn down his oxygen and his sats dropped again. He had a hard time getting tham back up and was finally successful at 7 liters @55%. Its not unusual for there to be setbacks with Aaron.
He has been running a temp on and off all day.
Saw Dr K this morning. She was sorry he was still here. The plan is to get him off the oxygen and breathing treatments so we can go home. He continues to be more alert and awake for longer periods of time. I think he is sleeping later in the morning because he is getting his night meds later than he does at home. He loves the new toys I got for him and is moving around a lot more in bed. He is still having diarrhea but the Dr thinks its from the antibiotics.
At 4pm he had a breathing treatment. The respiratory therapist turned his oxygen from 5 liters at 50% to 5 liters at 35%. His sats dropped and stayed at 76. They increased it to 40% and he tolerated that much better. Thankful for small steps with Aaron.
Midnight he had another treatment. They tried to turn down his oxygen and his sats dropped again. He had a hard time getting tham back up and was finally successful at 7 liters @55%. Its not unusual for there to be setbacks with Aaron.
He has been running a temp on and off all day.
view of Saturdays sunrise from our room
seizures
Thursday August 1, 2013
Aaron had a seizure first thing this morning. It was a usual type and only lasted a few seconds. I will NEVER get used to seizures. Dr O (neuro) came by this morning and his meds will stay the same. He was more awake to day and played with his toys. He LOVES his monkey. Aaron continues to amaze me every day. He goes through so much and yet he is always happy. I am so lucky to be his mom. He has taught me so much and I am a better person because of him. I love this little boy and treasure every second I get to spend with him. His temp has been 101 all day. He is now getting his breathing treatments every 6 hours. We are heading in the right direction, I think. We never know for sure with Aaron.
Aaron had a seizure first thing this morning. It was a usual type and only lasted a few seconds. I will NEVER get used to seizures. Dr O (neuro) came by this morning and his meds will stay the same. He was more awake to day and played with his toys. He LOVES his monkey. Aaron continues to amaze me every day. He goes through so much and yet he is always happy. I am so lucky to be his mom. He has taught me so much and I am a better person because of him. I love this little boy and treasure every second I get to spend with him. His temp has been 101 all day. He is now getting his breathing treatments every 6 hours. We are heading in the right direction, I think. We never know for sure with Aaron.
love his smile
a virus
Wednesday July 31, 2013
Aaron is doing better His sats are right around 92-95. He has had a temp for most of the day between 99-102. This is very high for Aaron since his temp usually runs in the 96's. He is still getting breathing treatments every 4 hours. They changed his oxygen to 5 liters at 50% and he is tolerating that well. He has been awake for short periods of time and played with his toys some, but is still very sleepy. He was ready for bed and got his evening meds. He started throwing up. I am worried that he threw up all of his seizure meds, but it looked like mostly bile. All of the blood tests were negative so the Drs are thinking he has some sort of virus.
Aaron is doing better His sats are right around 92-95. He has had a temp for most of the day between 99-102. This is very high for Aaron since his temp usually runs in the 96's. He is still getting breathing treatments every 4 hours. They changed his oxygen to 5 liters at 50% and he is tolerating that well. He has been awake for short periods of time and played with his toys some, but is still very sleepy. He was ready for bed and got his evening meds. He started throwing up. I am worried that he threw up all of his seizure meds, but it looked like mostly bile. All of the blood tests were negative so the Drs are thinking he has some sort of virus.
PICC line
Tuesday July 30, 2013
Dr C and Dr K come in this morning. They seem really concerned which makes me worry even more. (I LOVE Dr C. He has such a calming effect for me when it comes to Aaron. ) So now I worry more. His heart rate is in the 160's and 170's. He still has a temp. He continues to cough and his lungs sound coarse. He is started on Rocephin and a bunch of labs are ordered. Multiple people try multiple times to get blood from Aaron. They are not successful. Dr C finally decided to put in a PICC line. They want to give him general anesthesia. I tell them no. He has had to may problems with anesthesia the last 2 times. They are not happy and try to change my mind. I refuse and he gets his PICC line. He sleeps the rest of the day.
Dr C and Dr K come in this morning. They seem really concerned which makes me worry even more. (I LOVE Dr C. He has such a calming effect for me when it comes to Aaron. ) So now I worry more. His heart rate is in the 160's and 170's. He still has a temp. He continues to cough and his lungs sound coarse. He is started on Rocephin and a bunch of labs are ordered. Multiple people try multiple times to get blood from Aaron. They are not successful. Dr C finally decided to put in a PICC line. They want to give him general anesthesia. I tell them no. He has had to may problems with anesthesia the last 2 times. They are not happy and try to change my mind. I refuse and he gets his PICC line. He sleeps the rest of the day.
respiratory distress
Monday July 29, 2013
Aaron continues to struggle. His sats continue to go up and down. He has started to cough and it sounds awful. His heart rate is very high and he is now retracting. His temp is 99.9. His monitor reads APNEA numerous times. I feel so helpless and there is nothing I can do to make it better for him. I talk to the nurse about my concerns and she assures me that everything is fine. She states his pulse ox is just not reading well and that his high heart rate is likely from the seizures. I am NOT convinced. I know something is not right. They decide to go ahead and move him down to the peds floor. I am worried but nobody seems to be listening.
Dr K comes to see him and Aaron has an ear infection. He is started on an antibiotic.
Once on the peds floor he is doing the same. His heart rate is very high, and his sats are dropping and slow to come up. Then they drop and remain low. Thank goodness for my wonderful nurses on the peds floor. She call the Dr and a respiratory therapist. His sats are 79 he is in respiratory distress.
The respiratory therapist arrives and gives him an albuterol treatment. His sats go up a little. She states she cant get them any higher so she needs to go get a mask. She leaves. I look up and there is a group of respiratory therapist coming into the room. They try different masks, turning up his oxygen, calling for a chest xray. They tell me it is time to go back up to the PICU and that they will be putting him on CPAP. She deep suctions him and his sats come to 89/90. His chest xray is negative. They decide to keep him on the peds floor. They put him on a high flow cannula with humidified air. 10 liters at 100 %. He will get breathing treatments every 4 hours.
I knew something was wrong. I spend the rest of the night watching the monitors and praying.
in the PICU
.
Aaron continues to struggle. His sats continue to go up and down. He has started to cough and it sounds awful. His heart rate is very high and he is now retracting. His temp is 99.9. His monitor reads APNEA numerous times. I feel so helpless and there is nothing I can do to make it better for him. I talk to the nurse about my concerns and she assures me that everything is fine. She states his pulse ox is just not reading well and that his high heart rate is likely from the seizures. I am NOT convinced. I know something is not right. They decide to go ahead and move him down to the peds floor. I am worried but nobody seems to be listening.
Dr K comes to see him and Aaron has an ear infection. He is started on an antibiotic.
Once on the peds floor he is doing the same. His heart rate is very high, and his sats are dropping and slow to come up. Then they drop and remain low. Thank goodness for my wonderful nurses on the peds floor. She call the Dr and a respiratory therapist. His sats are 79 he is in respiratory distress.
The respiratory therapist arrives and gives him an albuterol treatment. His sats go up a little. She states she cant get them any higher so she needs to go get a mask. She leaves. I look up and there is a group of respiratory therapist coming into the room. They try different masks, turning up his oxygen, calling for a chest xray. They tell me it is time to go back up to the PICU and that they will be putting him on CPAP. She deep suctions him and his sats come to 89/90. His chest xray is negative. They decide to keep him on the peds floor. They put him on a high flow cannula with humidified air. 10 liters at 100 %. He will get breathing treatments every 4 hours.
I knew something was wrong. I spend the rest of the night watching the monitors and praying.
sleeping after all that
his high flow humidified air machine
.
PICU sunday
Sunday July 28, 2013
We arrive on PICU and I am grateful to see a familiar face. D has worked with Aaron before so she knows his medical history and all his meds. His heart rate is high and fluctuating, his respirations are many and fast, his temp is rising and he is very tired. He finally gets his meds and he sleeps restlessly for the night. During the night his sats drop and are slow to come back up. Not again. I can't. I don't want to do this again. He was doing so well he was happy again and I hate seeing him like this. I am emotionally drained.
.
We arrive on PICU and I am grateful to see a familiar face. D has worked with Aaron before so she knows his medical history and all his meds. His heart rate is high and fluctuating, his respirations are many and fast, his temp is rising and he is very tired. He finally gets his meds and he sleeps restlessly for the night. During the night his sats drop and are slow to come back up. Not again. I can't. I don't want to do this again. He was doing so well he was happy again and I hate seeing him like this. I am emotionally drained.
.
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