Wednesday March 27, 2013
I got a call this morning from Aaron's school. He has not been a school for a long time. His Dr sent a note stating that he will be out of school until we get his seizures under control. Besides that I am not comfortable with the school nurse at all. She has taken very little interest in Aaron and was worried about the diabetic kids snacks during his medical review. Really?? I am trying to tell you the signs of his crisis and explain his seizures and you are looking at your phone?!? She also never attempted to see Aaron while at school to get some sort of baseline on his health. Anyways. The teacher calls (she has never seen Aaron) and tells me that she needs to update his IEP and I need to come to the school today and sign the papers. I tell her that Aaron has just gotten out of the PICU after 11 days and that he is having surgery today. She tells me it will be real quick if I can just come to the school. I tell her that he has a NG Tube and IV pole and that he is having surgery, She says "Well I am not trying to be rude or pushy but I can bring the papers to your car" Are you serious. My child is sick and getting ready to go into surgery and all you can think about are some papers. I let her know that I was not coming to the school today. She did not seem very happy but she didn't really have a choice. My kids come before some paperwork. I am very disappointed with the school system. It seems like paperwork takes priority over the welfare of these special little kids.
Friday, March 29, 2013
Surgery date and meds
Monday March 25, 2013
I was able to get all of his appointments made. I talked with Dr S's office and the earliest they could schedule us was April 3rd!! I begged and pleaded to get us in sooner and explained a little about Aaron. The nurse is going to talk to Dr S and Aaron's other drs to see if they can just add him to the schedule this wee. I hope they can!!
I had to get a prescription filled for Vimpat (seizure med) and that was a nightmare. I went to our regular pharmacy where I was told I had a n illegal script. The pharmacist was rude. I was trying to explain to her that he had just been released from he PICU and he needed his morning dose of this med. She said she couldn't help me. I asked if she could call the hospital or his neuro and get it straightened out. She finally agreed. After she got it straightened out she informed me that they did not have enough in stock and that I would need to go to a different location to get it filled. She called the other pharmacy and made sure that they had enough in stock and she was told they did. I went to the other location and the girl at the window said "i don;t know what you are talking about I didn't talk to anyone on the phone" as she chomped on her gum and rolled her eyes. told her that the pharmacist had just talked to someone here in the last 5 minutes and she said "I told you i didn't talk to anyone on the phone" I started getting hot I was so mad. I asked her how many people were working and she shrugged her shoulders and said "2" I told her to go and ask the other person. Really?? You are in charge of counting pills and filling meds but you couldn't figure that one out? Makes me a little nervous to get my meds filled here. So the other one says "Yeah I talked to her" and she pulled him up on the computer. She walks overt to the shelf comes back and says "We don't have enough to fill your order" I ask her if she can just give me enough to get through the day and order some more,. She laughs and says "NO" By this time I am beyond frustrated with these two little girls. I can't believe that they fill prescriptions. I ask her why she told them she had enough and she just shrugs. She tells me the 4 other locations and says I can try one of them. Let me get this straight. I am just supposed to drive around town to the other locations hoping that they have this med n stock?? I ask her if she will call and she tells me she can't. I am about to have a meltdown. I don't ask her I TELL her that she is going to call the other location and ask. She told them she had it I am here and now she is saying she doesn't. She is going to help me out. Finally she calls after repeatedly telling me that she is not supposed to call other locations. WHATEVER. She find some at the other location and I go there too pick it up. Finally I have his meds 2 hours later. I get home to find out that they are going to add Aaron to the list on Thursday.!!YIPPEE!!
I was able to get all of his appointments made. I talked with Dr S's office and the earliest they could schedule us was April 3rd!! I begged and pleaded to get us in sooner and explained a little about Aaron. The nurse is going to talk to Dr S and Aaron's other drs to see if they can just add him to the schedule this wee. I hope they can!!
I had to get a prescription filled for Vimpat (seizure med) and that was a nightmare. I went to our regular pharmacy where I was told I had a n illegal script. The pharmacist was rude. I was trying to explain to her that he had just been released from he PICU and he needed his morning dose of this med. She said she couldn't help me. I asked if she could call the hospital or his neuro and get it straightened out. She finally agreed. After she got it straightened out she informed me that they did not have enough in stock and that I would need to go to a different location to get it filled. She called the other pharmacy and made sure that they had enough in stock and she was told they did. I went to the other location and the girl at the window said "i don;t know what you are talking about I didn't talk to anyone on the phone" as she chomped on her gum and rolled her eyes. told her that the pharmacist had just talked to someone here in the last 5 minutes and she said "I told you i didn't talk to anyone on the phone" I started getting hot I was so mad. I asked her how many people were working and she shrugged her shoulders and said "2" I told her to go and ask the other person. Really?? You are in charge of counting pills and filling meds but you couldn't figure that one out? Makes me a little nervous to get my meds filled here. So the other one says "Yeah I talked to her" and she pulled him up on the computer. She walks overt to the shelf comes back and says "We don't have enough to fill your order" I ask her if she can just give me enough to get through the day and order some more,. She laughs and says "NO" By this time I am beyond frustrated with these two little girls. I can't believe that they fill prescriptions. I ask her why she told them she had enough and she just shrugs. She tells me the 4 other locations and says I can try one of them. Let me get this straight. I am just supposed to drive around town to the other locations hoping that they have this med n stock?? I ask her if she will call and she tells me she can't. I am about to have a meltdown. I don't ask her I TELL her that she is going to call the other location and ask. She told them she had it I am here and now she is saying she doesn't. She is going to help me out. Finally she calls after repeatedly telling me that she is not supposed to call other locations. WHATEVER. She find some at the other location and I go there too pick it up. Finally I have his meds 2 hours later. I get home to find out that they are going to add Aaron to the list on Thursday.!!YIPPEE!!
Home
Sunday March 24, 2013
We are home!! It has been a long 11 days and I am so happy to be home.
I can't wait to get rid of this NG Tube. I am sure that it is so uncomfortable for him. I am thankful that he is still a little lethargic so he doesn't really know its there.
LOVE this crazy sleeper
We are home!! It has been a long 11 days and I am so happy to be home.
I can't wait to get rid of this NG Tube. I am sure that it is so uncomfortable for him. I am thankful that he is still a little lethargic so he doesn't really know its there.
Day 11 and discharged
Sunday March 24, 2013
Aaron is being discharged today as soon as he finishes his final dose of Zosan. I am so excited to go home I miss my boys and all of the craziness. I am so glad that Aaron is doing better Once we are home I have a lot of follow up appointments to make for Aaron. One with Dr C, Dr O, Dr M and Dr T. I need to call Dr S on Monday and set up his surgery. I am praying that it is soon.
Aaron is being discharged today as soon as he finishes his final dose of Zosan. I am so excited to go home I miss my boys and all of the craziness. I am so glad that Aaron is doing better Once we are home I have a lot of follow up appointments to make for Aaron. One with Dr C, Dr O, Dr M and Dr T. I need to call Dr S on Monday and set up his surgery. I am praying that it is soon.
PICU day 10
Saturday March 23, 2013
Aaron is doing great. He is awake for even longer periods of time and is enjoying all the attention form everyone. He has not had a seizure in 2 days and his sats have been great. He is considered a step down but they are going to keep him in PICU and hopefully discharge him tomorrow. I am still nervous about him pulling out the tube and hoping to get the surgery done soon.
Aaron is doing great. He is awake for even longer periods of time and is enjoying all the attention form everyone. He has not had a seizure in 2 days and his sats have been great. He is considered a step down but they are going to keep him in PICU and hopefully discharge him tomorrow. I am still nervous about him pulling out the tube and hoping to get the surgery done soon.
Sitting up and feeling much better
Day 9
Friday March 21, 2013
Aaron is doing really good. He is awake for longer periods of time and much more alert. He is still off oxygen and keeping his sats up. He is off all monitors except for the pulse ox. He is still getting his breathing treatments and they say he is sounding much better. A few crackles and a little diminshed in the lower right lung, but much better. Dr S is unable to fit us in his surgery schedule while we are here so he will go home with th NG TUBE. yikes!! I am so afraid he is going to pull it out and I do not want to be the ne that has to hold him down to put it back in place. I am praying that he will be able to get the surgery soon. Aaron is interactin with everyone more and more. The nurses love him and it is so comfortain got watch them interact with him. He is loving all of the attention.
He was able to start the Sabril last nightand so far he is doing well.
Aaron is doing really good. He is awake for longer periods of time and much more alert. He is still off oxygen and keeping his sats up. He is off all monitors except for the pulse ox. He is still getting his breathing treatments and they say he is sounding much better. A few crackles and a little diminshed in the lower right lung, but much better. Dr S is unable to fit us in his surgery schedule while we are here so he will go home with th NG TUBE. yikes!! I am so afraid he is going to pull it out and I do not want to be the ne that has to hold him down to put it back in place. I am praying that he will be able to get the surgery soon. Aaron is interactin with everyone more and more. The nurses love him and it is so comfortain got watch them interact with him. He is loving all of the attention.
He was able to start the Sabril last nightand so far he is doing well.
Day 8
Thursday March 21, 2013
Aaron is doing better He is much more alert and has even played with his monkey and asked for music. Everyone here is so good with him. Anyone that comes in the room knows he likes his monkey and plays his music box for him. They know what he is trying to say and have learned his signs. He is much more comfortable here. He waves to everyone as the come in and out of his room and has even started to smile again. They were able to get him off oxygen during the night and so far he is doing great. He had a upper GI today and it did not show any reflux and he had a swallow study that did not show any aspirating. They said the tests were limiting and he was sitting up (Aaron likes to lay on the floor and drink) so they are thinking that a G tube will be in his best interest. This is not new as we have been talking about one for a few months with his drs. This will help with the aspirating and lower the risk of aspiration pneumonia. They are contacting Dr S (pediatric surgeon) to see if he can fit us in while we are here. I am so thankful that he is doing better. I miss his smile and giggle.
Aaron is doing better He is much more alert and has even played with his monkey and asked for music. Everyone here is so good with him. Anyone that comes in the room knows he likes his monkey and plays his music box for him. They know what he is trying to say and have learned his signs. He is much more comfortable here. He waves to everyone as the come in and out of his room and has even started to smile again. They were able to get him off oxygen during the night and so far he is doing great. He had a upper GI today and it did not show any reflux and he had a swallow study that did not show any aspirating. They said the tests were limiting and he was sitting up (Aaron likes to lay on the floor and drink) so they are thinking that a G tube will be in his best interest. This is not new as we have been talking about one for a few months with his drs. This will help with the aspirating and lower the risk of aspiration pneumonia. They are contacting Dr S (pediatric surgeon) to see if he can fit us in while we are here. I am so thankful that he is doing better. I miss his smile and giggle.
PICU day 7
Wednesday March 20, 2013
They had to increase his oxygen because his sats started to drop into the 80's again. His sodium was normal today at 140 but his potassium was still a little low. I talked with Neuro and because he isnt having as many seizures they are keeping his meds the same. We should be able to start the Sabril tomorrow evening. They were having some problems with his Central Line but the IV team was able to get it cleared. His blood sugars are back to normal so they are fairly certain the high levels were from the TPN. His nose is very sore so they moved the NG Tube to the other side. They are going too try and decrease his oxygen again to day. He is awake for 1-2 minutes at a time and is a little more alert today. Dr Y said he is finally headed in the right direction. The nurses here are wonderful. They have taken the time to get to know Aaron and talk to him all the time. Although he gets good care at his regular hospital none of the nurses there have never taken the time to get to know him. They are in and out of the room without a lot of patient care. The nurses have NEVER given him a bath at his regular hospital and when he wets through the bedding they just add a pad on top of the wet bedding. The pump alarms go off for extended periods of time and Aaron sees the student nurses more than his assigned nurse. It is always a very stressful time for the both of us when he is in the hospital. This time Aaron seems more relaxed and it is a much better environment. I wish his Drs could see him at this hospital.
They had to increase his oxygen because his sats started to drop into the 80's again. His sodium was normal today at 140 but his potassium was still a little low. I talked with Neuro and because he isnt having as many seizures they are keeping his meds the same. We should be able to start the Sabril tomorrow evening. They were having some problems with his Central Line but the IV team was able to get it cleared. His blood sugars are back to normal so they are fairly certain the high levels were from the TPN. His nose is very sore so they moved the NG Tube to the other side. They are going too try and decrease his oxygen again to day. He is awake for 1-2 minutes at a time and is a little more alert today. Dr Y said he is finally headed in the right direction. The nurses here are wonderful. They have taken the time to get to know Aaron and talk to him all the time. Although he gets good care at his regular hospital none of the nurses there have never taken the time to get to know him. They are in and out of the room without a lot of patient care. The nurses have NEVER given him a bath at his regular hospital and when he wets through the bedding they just add a pad on top of the wet bedding. The pump alarms go off for extended periods of time and Aaron sees the student nurses more than his assigned nurse. It is always a very stressful time for the both of us when he is in the hospital. This time Aaron seems more relaxed and it is a much better environment. I wish his Drs could see him at this hospital.
PICU day 6
Tuesday March 19, 2013
Aaron is breathing easier and they are starting ti decrease his oxygen again. His sodium level is still high and potassium still low. All of the antibiotics and meds are bothering his stomach. He has been a little more alert today, responding to just touch instead of pain. He is still getting all of his breathing treatments and CPT. The Respiratory Therapist said he is starting to sound better but still diminished breath sounds on the right. By the end of the night he was on 2 liters at 45%!
Aaron is breathing easier and they are starting ti decrease his oxygen again. His sodium level is still high and potassium still low. All of the antibiotics and meds are bothering his stomach. He has been a little more alert today, responding to just touch instead of pain. He is still getting all of his breathing treatments and CPT. The Respiratory Therapist said he is starting to sound better but still diminished breath sounds on the right. By the end of the night he was on 2 liters at 45%!
day 5
Monday March 18, 2013
Aaron has had his IV fluids increased since he is not peeing. His sodium level is high and his potassium level is very low. He is still needing insulin. He is starting to cry so that is a good sign that he is finally starting to wake up. I got to hold him for a few minutes while they changed his bedding but he slept the entire time. They are sending him hom with a suction machine and Lincare brought it in today. Hopefully this will help him from aspirating during his seizures. They were able to decrease his oxygen some today. He is now on 10 liters at 45%. I am so thankful that he was not put on a vent.
Aaron has had his IV fluids increased since he is not peeing. His sodium level is high and his potassium level is very low. He is still needing insulin. He is starting to cry so that is a good sign that he is finally starting to wake up. I got to hold him for a few minutes while they changed his bedding but he slept the entire time. They are sending him hom with a suction machine and Lincare brought it in today. Hopefully this will help him from aspirating during his seizures. They were able to decrease his oxygen some today. He is now on 10 liters at 45%. I am so thankful that he was not put on a vent.
day 4 in PICU
Sunday March 17, 2013
Aaron continues to struggle with his oxygen level but has been able to stay on the high flow cannula. Hey have added hypertonic water to his breathing treatments.The Dr also wanted him to try the vest for CPT. We tried it twice and he had a seizure both times. They decided to go back to the Flimm Fighter since he tolerated that better. His xray this morning was worse than yesterday so they switched his antibiotic to Zosan. He continues to need insulin to manage his blood sugar so they have discontinued the TPN and inserted a NG tube. This afternoon his sats dropped to 0 and he stopped breathing for a few moments during a seizure. His neuro increased his Vimpat and we are still waiting for his Sabril to arrive. He has been awake for a few seconds today but is stil very lethargic.
Aaron continues to struggle with his oxygen level but has been able to stay on the high flow cannula. Hey have added hypertonic water to his breathing treatments.The Dr also wanted him to try the vest for CPT. We tried it twice and he had a seizure both times. They decided to go back to the Flimm Fighter since he tolerated that better. His xray this morning was worse than yesterday so they switched his antibiotic to Zosan. He continues to need insulin to manage his blood sugar so they have discontinued the TPN and inserted a NG tube. This afternoon his sats dropped to 0 and he stopped breathing for a few moments during a seizure. His neuro increased his Vimpat and we are still waiting for his Sabril to arrive. He has been awake for a few seconds today but is stil very lethargic.
Thursday, March 28, 2013
Day 3 in the PICU
Saturday March 16, 2013
Aaron is doing about the same. He is still needing lots of oxygen but so far has been able to stay on the high flow cannula. He is however having problems with his blood sugar being too high and is now needing insulin. I am hoping that this is not going to be a new issue. His xray looked better today but the Dr said it was because of the bronchoscopy yesterday. He is still sleeping.
Aaron is doing about the same. He is still needing lots of oxygen but so far has been able to stay on the high flow cannula. He is however having problems with his blood sugar being too high and is now needing insulin. I am hoping that this is not going to be a new issue. His xray looked better today but the Dr said it was because of the bronchoscopy yesterday. He is still sleeping.
PICU day 2
Friday March 15, 2013
Aaron is in the PICU. The nurses are amazing. They do so many little extra things and are super friendly. It is about patient care and not just getting their job done. The are wonderful with my precious little angel. I just wish that Dr C was here taking care of Aaron. He knows Aaron.
Aaron looks awful. He is so pale and there are so many wires and tubes. They did another chest xray and this one was even worse. The entire lung was white and it had shifted. There were no breath sounds. They increased his breathing treatments to every 2 hours, addded Mucca Mist and CPT. They also placed a Central Line in his right thigh. He is now getting TPN through this line. He is still running a temp so they changed his antibiotic. He is needing a lot of oxygen and the Dr said he will probably need to be put on a ventilator becuase he is not breathing very well. Right now he is on a high flow nasal cannula but his oxygen levels are still very low.
I talked with Neuro and she is going to leave his Vimpat the same and she had me fill out the paperwork for the new med Sabril. We also discussed he Ketogenic Diet but this is not an option for Aaron due to his Hypoglycemia. She brought me some information on the Vagal Nerve Stimulator but I am not sure about that right now.
He was finally diagnosed with Aspiration Pneumonia. They did a bronchoscopy and got a lot of the stuff out of his lung. He is still needing a lot of oxygen but his oxygen levels are up to 80% now. He is still sleeping. I just want to hold my sweet little boy.
My poor little angel is so sick. He has so many tubes and wires and lots of meds to help him get better We are praying that he will not need to be put on a ventilator.
all his IV meds
Aaron is in the PICU. The nurses are amazing. They do so many little extra things and are super friendly. It is about patient care and not just getting their job done. The are wonderful with my precious little angel. I just wish that Dr C was here taking care of Aaron. He knows Aaron.
Aaron looks awful. He is so pale and there are so many wires and tubes. They did another chest xray and this one was even worse. The entire lung was white and it had shifted. There were no breath sounds. They increased his breathing treatments to every 2 hours, addded Mucca Mist and CPT. They also placed a Central Line in his right thigh. He is now getting TPN through this line. He is still running a temp so they changed his antibiotic. He is needing a lot of oxygen and the Dr said he will probably need to be put on a ventilator becuase he is not breathing very well. Right now he is on a high flow nasal cannula but his oxygen levels are still very low.
I talked with Neuro and she is going to leave his Vimpat the same and she had me fill out the paperwork for the new med Sabril. We also discussed he Ketogenic Diet but this is not an option for Aaron due to his Hypoglycemia. She brought me some information on the Vagal Nerve Stimulator but I am not sure about that right now.
He was finally diagnosed with Aspiration Pneumonia. They did a bronchoscopy and got a lot of the stuff out of his lung. He is still needing a lot of oxygen but his oxygen levels are up to 80% now. He is still sleeping. I just want to hold my sweet little boy.
My poor little angel is so sick. He has so many tubes and wires and lots of meds to help him get better We are praying that he will not need to be put on a ventilator.
central line
Monday, March 18, 2013
911 again
Thursday March 14, 2013
It happened again...
Aaron got up this morning and he really wasn't himself. He was cold and a little lethargic. I gave him all his morning meds and he ate a few bites of breakfast. As he was drinking his pediasure he had a seizure. He recovered from it fairly well. About 10 minutes later he had a cluster of 5-6 tonic seizures and he wasn't looking very good. I called Dr C and he was going to be seen t 11am. Around 9:20 I knew we weren't going to make it until 11am. I picked Aaron up and called to make an appointment with whoever could see us right away. As I was waiting for the nurse to answer Aaron went limp in my arms. I yelled for Keagan to go upstairs and I laid Aaron in the floor. He was grey and not breathing. I started to panic but realized I was home alone with the kids. I called 911 and he took a little breath and then stopped again. This went on until the ambulance arrived. I couldn't think. I need someone to come over right away to be with the boys. I can't let Aaron go alone. He has too many issues. I need to explain everything to them. They arrive and he does not look good. My MIL arrives just as they are taking him to the ambulance. We get in the ambulance and they start his IV after only 2 tries. I am trying to explain everything and they ask what hospital. I say Lutheran and we are on our way with lights and sirens. They didn't take the time to buckle me in and the paramedic looks panicked. His heart rate is 125 VERY high for Aaron. He is so cold. He is very lethargic. He is so pale and mottled. His blood sugar is 43 (it was 67 at breakfast which is normal for Aaron). He looks at me and says "do you have any objection to going to PR... (not sure what he is saying. I am getting nervous, he seems nervous..I ask what that means and he says" PV North.. we need to get him somewhere right now and it is closer." I panic and tell him to go wherever they need to go. He continues to move around in the back of ambulance. He keeps saying Aaron's name and lifting up his eyes. It seems like it took forever to get there and we are in the ER. It again seems chaotic but everyone has a specific job. They are asking lots of questions I am telling them to call his drs. They tell me the xray shows pneumonia. Pneumonia?? He doesn't have a cough. He has only had a little runny nose for the last 2 days. I think it is his sodium level. They aren't sure. It is determined that he is still seizing just not showing any muscle response to it. He is given 2 doses of valium and he calms down. He has labs drawn and they do an EEG. He is put on a warmer blanket to get his temp up. They finally talk to Dr C (Aaron's reg Dr) and he is being admitted to PICU. We get up the the PICU and I talk to the Intensivist Dr P (from Aaron's regular hospital) We are talking about his meds and all of seizures. He says he has aspirated during his seizures and it has caused pneumonia. He is very sick. The xray shows a white areas in his right lung. Neuro comes and they start him on yet another seizure med Vimpat. He spikes a fever and is ordered a antibiotic. He is on oxygen, 10 liters at 100 %. They put him on a high flow cannula. The Dr says he may need to be put on a ventilator. He is getting breathing treatments every 4 hours. His oxygen levels are below 90. He doesn't look good. He gets an NG tube so he can take all of meds and for nutrition later. It is a very long night.
It happened again...
Aaron got up this morning and he really wasn't himself. He was cold and a little lethargic. I gave him all his morning meds and he ate a few bites of breakfast. As he was drinking his pediasure he had a seizure. He recovered from it fairly well. About 10 minutes later he had a cluster of 5-6 tonic seizures and he wasn't looking very good. I called Dr C and he was going to be seen t 11am. Around 9:20 I knew we weren't going to make it until 11am. I picked Aaron up and called to make an appointment with whoever could see us right away. As I was waiting for the nurse to answer Aaron went limp in my arms. I yelled for Keagan to go upstairs and I laid Aaron in the floor. He was grey and not breathing. I started to panic but realized I was home alone with the kids. I called 911 and he took a little breath and then stopped again. This went on until the ambulance arrived. I couldn't think. I need someone to come over right away to be with the boys. I can't let Aaron go alone. He has too many issues. I need to explain everything to them. They arrive and he does not look good. My MIL arrives just as they are taking him to the ambulance. We get in the ambulance and they start his IV after only 2 tries. I am trying to explain everything and they ask what hospital. I say Lutheran and we are on our way with lights and sirens. They didn't take the time to buckle me in and the paramedic looks panicked. His heart rate is 125 VERY high for Aaron. He is so cold. He is very lethargic. He is so pale and mottled. His blood sugar is 43 (it was 67 at breakfast which is normal for Aaron). He looks at me and says "do you have any objection to going to PR... (not sure what he is saying. I am getting nervous, he seems nervous..I ask what that means and he says" PV North.. we need to get him somewhere right now and it is closer." I panic and tell him to go wherever they need to go. He continues to move around in the back of ambulance. He keeps saying Aaron's name and lifting up his eyes. It seems like it took forever to get there and we are in the ER. It again seems chaotic but everyone has a specific job. They are asking lots of questions I am telling them to call his drs. They tell me the xray shows pneumonia. Pneumonia?? He doesn't have a cough. He has only had a little runny nose for the last 2 days. I think it is his sodium level. They aren't sure. It is determined that he is still seizing just not showing any muscle response to it. He is given 2 doses of valium and he calms down. He has labs drawn and they do an EEG. He is put on a warmer blanket to get his temp up. They finally talk to Dr C (Aaron's reg Dr) and he is being admitted to PICU. We get up the the PICU and I talk to the Intensivist Dr P (from Aaron's regular hospital) We are talking about his meds and all of seizures. He says he has aspirated during his seizures and it has caused pneumonia. He is very sick. The xray shows a white areas in his right lung. Neuro comes and they start him on yet another seizure med Vimpat. He spikes a fever and is ordered a antibiotic. He is on oxygen, 10 liters at 100 %. They put him on a high flow cannula. The Dr says he may need to be put on a ventilator. He is getting breathing treatments every 4 hours. His oxygen levels are below 90. He doesn't look good. He gets an NG tube so he can take all of meds and for nutrition later. It is a very long night.
Wednesday, March 13, 2013
neuro apointment
Tuesday March 12, 2013
Aaron went to his Neuro appointment. He was cold and lethargic. His heart rate was 70. The Dr came in and we talked. The words that were said ..."I'm sorry, I don't know what to do next. I am not very optimisitc. I am going to send him down to Riley Children's Hospital. Maybe they will have some answers." So we are leaving him on the Onfi for now and waiting for Riley to schedule our appointments. So for now the seizures continue and Aaron sleeps.
Aaron went to his Neuro appointment. He was cold and lethargic. His heart rate was 70. The Dr came in and we talked. The words that were said ..."I'm sorry, I don't know what to do next. I am not very optimisitc. I am going to send him down to Riley Children's Hospital. Maybe they will have some answers." So we are leaving him on the Onfi for now and waiting for Riley to schedule our appointments. So for now the seizures continue and Aaron sleeps.
Monday, March 11, 2013
Keag's conference
Tuesday March 12, 2013
Keag's conference was tonight. I am so proud of him. He is doing great. Keag is one of the best behaved kids in his class!! He does well transitioning between activities, plays well with other kids and is working hard in class. He has learned so many things this year. i am so thankful that he is able to go back next year for their full day program. Hopefully this will be what he needs to go to Nick's school. I was so worried about him going to school and he is doing great!
love this boy!!
Keag's conference was tonight. I am so proud of him. He is doing great. Keag is one of the best behaved kids in his class!! He does well transitioning between activities, plays well with other kids and is working hard in class. He has learned so many things this year. i am so thankful that he is able to go back next year for their full day program. Hopefully this will be what he needs to go to Nick's school. I was so worried about him going to school and he is doing great!
love this boy!!
med increase
Monday March 11, 2013
Aaron has started to have more seizures again. The Onfi seemed to help for awhile but now he is having multiple drop seizures again. He is still having a very hard time regulating his body temperature and is sleeping a lot. I am having trouble keeping it above 96 and Dr C would like it kept above 97 degrees. I am sure that this is because of the Onfi. I called the Neuro nurse this afternoon and they are having Aaron come into the office tomorrow morning, They also increased his bedtime dose of Onfi. I am very nervous about the increase but I know we need to get these seizures under control. I also know that he has amazing Drs and they are watching him closely and I am very thankful for all of them. Aaron is such a sweet little boy. I just want him to start feeling better.
so sweet
Aaron has started to have more seizures again. The Onfi seemed to help for awhile but now he is having multiple drop seizures again. He is still having a very hard time regulating his body temperature and is sleeping a lot. I am having trouble keeping it above 96 and Dr C would like it kept above 97 degrees. I am sure that this is because of the Onfi. I called the Neuro nurse this afternoon and they are having Aaron come into the office tomorrow morning, They also increased his bedtime dose of Onfi. I am very nervous about the increase but I know we need to get these seizures under control. I also know that he has amazing Drs and they are watching him closely and I am very thankful for all of them. Aaron is such a sweet little boy. I just want him to start feeling better.
so sweet
Saturday, March 9, 2013
trip to the dr
Saturday March 9, 2013
Aaron got up and was a little more alert today. The boys were getting haircuts (so lucky she comes to the house to cut their hair) and Aaron's temp started to drop. It was 96.6. Taevon got his hair cut first. I was feeding Tae and I looked at Aaron and his feet and legs were purple. I thought he had stopped breathing again. He was breathing, he was just VERY cold. I took his temp and it was 96. I wrapped him up in his warmer blanket and he fell asleep. I checked his temp because he felt so cold and it was down to 95.2. I called the Dr and they had him come right in to the office. The nurse took his temp and it was down to 94.6. Dr S (on call Dr) came in a rechecked his temp. It was the same 94.6. I know this is from the Onfi but because his heart rate was OK and he is still drinking they are going to leave his meds alone. It is hard to distinguish between the effects of all his seizures and an "Aaron episode". I just need to keep a close eye on him and call with any changes. I am so glad that we were able to come home. I feel horrible for the girl that cuts the boys hair. She probably won't want to come here again. So far Aaron is doing OK. His temp is still very low and he has slept for most of the day.
Aaron got up and was a little more alert today. The boys were getting haircuts (so lucky she comes to the house to cut their hair) and Aaron's temp started to drop. It was 96.6. Taevon got his hair cut first. I was feeding Tae and I looked at Aaron and his feet and legs were purple. I thought he had stopped breathing again. He was breathing, he was just VERY cold. I took his temp and it was 96. I wrapped him up in his warmer blanket and he fell asleep. I checked his temp because he felt so cold and it was down to 95.2. I called the Dr and they had him come right in to the office. The nurse took his temp and it was down to 94.6. Dr S (on call Dr) came in a rechecked his temp. It was the same 94.6. I know this is from the Onfi but because his heart rate was OK and he is still drinking they are going to leave his meds alone. It is hard to distinguish between the effects of all his seizures and an "Aaron episode". I just need to keep a close eye on him and call with any changes. I am so glad that we were able to come home. I feel horrible for the girl that cuts the boys hair. She probably won't want to come here again. So far Aaron is doing OK. His temp is still very low and he has slept for most of the day.
little construction man
March 8, 2013
Keagan has decided that he wants to be a "builder man". He has been carrying around tools and wearing his hard hat for days. He was very excited to learn that his "uncle Yogurt" does construction. He can't wait to see hin and show him all of his tools.
Keagan has decided that he wants to be a "builder man". He has been carrying around tools and wearing his hard hat for days. He was very excited to learn that his "uncle Yogurt" does construction. He can't wait to see hin and show him all of his tools.
Friday, March 8, 2013
Ist day back
Friday March 8, 2013
Today I had to send Tae back to school. It was so hard. I can't wait for his therapy to start so he can begin school at home. I requested that he remain in his wheelchair while at school. Poor baby. I never use his wheelchair at home. He is either in his Tumbleforms chair or on the floor. He loves to be on the floor. I can't risk him being on the floor again at school. I wish he could tell me what goes on while he is at school. The lack of communication is very unsettling. I wonder what has happened when he comes home sad or very grumpy. I am still bothered by the lack of bond that I have seen between Tae and those that spend all morning with him at school. I am reassured that on Mondays he sees his OT. He loves her and that was so good to see. He is the sweetest little boy and his smile melts my heart. I am looking forward to spending all day with him and helping him reach his goals.
Today I had to send Tae back to school. It was so hard. I can't wait for his therapy to start so he can begin school at home. I requested that he remain in his wheelchair while at school. Poor baby. I never use his wheelchair at home. He is either in his Tumbleforms chair or on the floor. He loves to be on the floor. I can't risk him being on the floor again at school. I wish he could tell me what goes on while he is at school. The lack of communication is very unsettling. I wonder what has happened when he comes home sad or very grumpy. I am still bothered by the lack of bond that I have seen between Tae and those that spend all morning with him at school. I am reassured that on Mondays he sees his OT. He loves her and that was so good to see. He is the sweetest little boy and his smile melts my heart. I am looking forward to spending all day with him and helping him reach his goals.
therapy
Thursday March 7, 2013
Taevon had his therapy assessment today for OT and Speech. I love his OT. She also works with him at school. It was so reassuring to see how he responded to her today. He was so comfortable with her and just melted against her when they were on the floor. As soon as insurance approves his therapy he can start. Hopefully it won't be too long. He is doing so well. He has not needed Botox since we have had him. He was getting it every 3 months in Washington, but since I do his exercises with him at least twice a day his range of motion has improved. He is rolling around on the floor and interacts so much more with the boys. I can't wait to see all that he will learn to do with the addition of this therapy.
Taevon had his therapy assessment today for OT and Speech. I love his OT. She also works with him at school. It was so reassuring to see how he responded to her today. He was so comfortable with her and just melted against her when they were on the floor. As soon as insurance approves his therapy he can start. Hopefully it won't be too long. He is doing so well. He has not needed Botox since we have had him. He was getting it every 3 months in Washington, but since I do his exercises with him at least twice a day his range of motion has improved. He is rolling around on the floor and interacts so much more with the boys. I can't wait to see all that he will learn to do with the addition of this therapy.
snow day
Wednesday March 6, 2013
School was canceled for the boys today. Nicholas got up very early and when I told him he had a snow day he squealed so loud and went and woke up Keag. They couldn't;t get downstairs fast enough to play. They were so cute. Aaron slept all day. He was only awake for about 3-4 hours today. His temp was still very low but he is still drinking and eating some. I stressed dosed him again today but I think he is going to need to go and see Dr C in the next few days. Taevon has been in a great mood since he got his cast off. He is sleeping better at night and rolling around on the floor. I am so glad that he is doing better. I love having all my boys home during the day!
School was canceled for the boys today. Nicholas got up very early and when I told him he had a snow day he squealed so loud and went and woke up Keag. They couldn't;t get downstairs fast enough to play. They were so cute. Aaron slept all day. He was only awake for about 3-4 hours today. His temp was still very low but he is still drinking and eating some. I stressed dosed him again today but I think he is going to need to go and see Dr C in the next few days. Taevon has been in a great mood since he got his cast off. He is sleeping better at night and rolling around on the floor. I am so glad that he is doing better. I love having all my boys home during the day!
Tuesday, March 5, 2013
Onfi
Tuesday March 5, 2013
Aaron is having more trouble maintaining his body temp and he has begun to sleep a lot. I am thinking this is from the Onfi. He is still drinking and eating some so we will just have to wait and see. He slept until 7am which is very late for Aaron. He usually is up around 5:30 am. He crawled into my lap and slept from 9am until 11:30am. He was awake long enough to take his afternoon meds and then he asked to go to bed. he slept until 4:15pm. He drank and ate some green beans. He sat on my lap again and slept from 5:30 until 6:45pm. He took his evening meds and asked to go to bed again. He fell right to sleep. I am pretty sure that this is from the Onfi, but am hoping that maybe he is just fighting off a virus because I think the Onfi is helping some. I stressed dosed him so I should know soon if he is going to get worse. I am praying for a quiet night for Aaron. He needs it.
Aaron is having more trouble maintaining his body temp and he has begun to sleep a lot. I am thinking this is from the Onfi. He is still drinking and eating some so we will just have to wait and see. He slept until 7am which is very late for Aaron. He usually is up around 5:30 am. He crawled into my lap and slept from 9am until 11:30am. He was awake long enough to take his afternoon meds and then he asked to go to bed. he slept until 4:15pm. He drank and ate some green beans. He sat on my lap again and slept from 5:30 until 6:45pm. He took his evening meds and asked to go to bed again. He fell right to sleep. I am pretty sure that this is from the Onfi, but am hoping that maybe he is just fighting off a virus because I think the Onfi is helping some. I stressed dosed him so I should know soon if he is going to get worse. I am praying for a quiet night for Aaron. He needs it.
Monday, March 4, 2013
ortho appointment
Monday March 4, 2013
Tae went to the bone Dr today. They x-rayed his leg and it showed good bone growth. He was so excited to get his cast off he kept kicking his legs and smiling. She did say that his bones are more brittle than a typical child but it still doesn't explain what happened at school and how no adult knows what happened. I guess I should not be too surprised since he did get a rug burn at the beginning of the year and they don't know that happened either. The lack of concern on the part of the school is also very upsetting. I am happy with our decision to homeschool Tae. I know he is going to thrive and I am looking forward to all of the time we will get to spend together.
Tae went to the bone Dr today. They x-rayed his leg and it showed good bone growth. He was so excited to get his cast off he kept kicking his legs and smiling. She did say that his bones are more brittle than a typical child but it still doesn't explain what happened at school and how no adult knows what happened. I guess I should not be too surprised since he did get a rug burn at the beginning of the year and they don't know that happened either. The lack of concern on the part of the school is also very upsetting. I am happy with our decision to homeschool Tae. I know he is going to thrive and I am looking forward to all of the time we will get to spend together.
Sunday, March 3, 2013
lost tooth
March 3, 2013
Nicholas lost another tooth. Well, actually he pulled, twisted and wiggled it until it finally fell out. He was a bloody mess. It was all over his face and his hands. For someone who always asks "am I bleeding" when he gets hurt does not mind blood all over him if he gets some money for his tooth. He is so funny. I am so lucky to have 4 little boys and I couldn''t love them anymore than I already do. They are my whole world.
Nicholas lost another tooth. Well, actually he pulled, twisted and wiggled it until it finally fell out. He was a bloody mess. It was all over his face and his hands. For someone who always asks "am I bleeding" when he gets hurt does not mind blood all over him if he gets some money for his tooth. He is so funny. I am so lucky to have 4 little boys and I couldn''t love them anymore than I already do. They are my whole world.
science central and soccer
March 2, 2013
Nick went to Science Central to Dr day. He has looked forward to this all week. He loves everything medical and was looking forward to going through the ambulance and helicpoter. After seeing all of the display and asking LOTS of questions he decided to walk on the moon. He said this was one of his favorite parts of the day. His favorite part of the day was seeing his cousins Ashley and Colton. The boys love them.
Keagan went to his soccer game and was the goalie. Grandma and papa said he made a save and bought him some cheetos (his favorite) after the game. All he can talk about is cheetos!! He loves them!!
Nick went to Science Central to Dr day. He has looked forward to this all week. He loves everything medical and was looking forward to going through the ambulance and helicpoter. After seeing all of the display and asking LOTS of questions he decided to walk on the moon. He said this was one of his favorite parts of the day. His favorite part of the day was seeing his cousins Ashley and Colton. The boys love them.
Keagan went to his soccer game and was the goalie. Grandma and papa said he made a save and bought him some cheetos (his favorite) after the game. All he can talk about is cheetos!! He loves them!!
Tae
March 1, 2013
Today Tae's teacher was supposed to come and see him. She was supposed to come last Friday but she never showed up or let me know that she wasn't coming. So far nobody at his school has called to see how he has been doing. She called 10 mins before she was to come and said she wasn't coming in she was only going to drop off some cards form the kids. She came and Tae was right there, she never even spoke to him. WOW You see my baby Mon-Fri all morning and you can't even say "Hi" I wonder what it is like in the classroom. Does anyone talk to him? Do they interact with him at all? This is the second person from school that I have seen with Tae that have shown no sort of bond with him. That makes me so sad. He deserves the same type of environment that Nicholas receives at his school. We LOVE Nick's school all of his teachers, the nurse and the principal. Nicholas "only" has a peanut allergy and they are so on top of everything. Tae has a feeding tube and they were not wanting to feed him during school hours. Tae got a rug burn at school at the beginning of the year and all they could tell me was "well, he didn't fall" I can't believe the difference in the environment of the the two schools in the same district right down the road form one another. I have attempted to address my concerns with Tae's school but was told that is how they deal with their special needs children. So I have decided that it is in the best interest of Tae to be home schooled. He will receive his therapy through a third party and I will work with him at home. He deserves to be in a loving and safe environment
LOVE him
Today Tae's teacher was supposed to come and see him. She was supposed to come last Friday but she never showed up or let me know that she wasn't coming. So far nobody at his school has called to see how he has been doing. She called 10 mins before she was to come and said she wasn't coming in she was only going to drop off some cards form the kids. She came and Tae was right there, she never even spoke to him. WOW You see my baby Mon-Fri all morning and you can't even say "Hi" I wonder what it is like in the classroom. Does anyone talk to him? Do they interact with him at all? This is the second person from school that I have seen with Tae that have shown no sort of bond with him. That makes me so sad. He deserves the same type of environment that Nicholas receives at his school. We LOVE Nick's school all of his teachers, the nurse and the principal. Nicholas "only" has a peanut allergy and they are so on top of everything. Tae has a feeding tube and they were not wanting to feed him during school hours. Tae got a rug burn at school at the beginning of the year and all they could tell me was "well, he didn't fall" I can't believe the difference in the environment of the the two schools in the same district right down the road form one another. I have attempted to address my concerns with Tae's school but was told that is how they deal with their special needs children. So I have decided that it is in the best interest of Tae to be home schooled. He will receive his therapy through a third party and I will work with him at home. He deserves to be in a loving and safe environment
ER Neuro visit
February 28, 2013
Aaron's seizures have begun to increase. He is still having many different types and is now having convulsions. I talked to the Neuro nurse and they had Aaron come right in to see Dr B. We talked and she listened. She assured me that she was there for the duration but that she needed to be very aggressive in his treatment. This syndrome causes brain damage, most often severe and most children end up in wheelchairs. Aaron already has severe developmental delays, is missing parts of his brain and is already in a wheelchair. It is hard to think about what this will do to Aaron. She started him on Onfi. This is the medication that caused him to be in the PICU this past October. She is starting him out very slow and they are going to keep a close eye on him but I am a nervous wreck. When Aaron gets sick he gets very sick very fast. His heart rate and body temp drop very low. All I can do is pray and trust that he will be ok.
love this sweet little boy
Aaron's seizures have begun to increase. He is still having many different types and is now having convulsions. I talked to the Neuro nurse and they had Aaron come right in to see Dr B. We talked and she listened. She assured me that she was there for the duration but that she needed to be very aggressive in his treatment. This syndrome causes brain damage, most often severe and most children end up in wheelchairs. Aaron already has severe developmental delays, is missing parts of his brain and is already in a wheelchair. It is hard to think about what this will do to Aaron. She started him on Onfi. This is the medication that caused him to be in the PICU this past October. She is starting him out very slow and they are going to keep a close eye on him but I am a nervous wreck. When Aaron gets sick he gets very sick very fast. His heart rate and body temp drop very low. All I can do is pray and trust that he will be ok.
seizure meds
February 26, 2013
Aaron is on a lot of seizure meds but he is still continuing to have multiple seizures daily. He still turns blue and just falls over and he has a hard time snapping out of the seizures. He is taking 500 mg of Keppra twice a day and 250mg of Depakote three times a day. All together he takes 21 pills a day plus an injection at bedtime. He is very tired and unsteady. He falls all the time and he is getting a helmet to protect his head. He has been eating and I think he has gained some weight. This sweet little boy is amazing. Through everything he continues to give me kisses and always has a smile. I am hoping that he starts to respond to these meds so he feels better.
Aaron is on a lot of seizure meds but he is still continuing to have multiple seizures daily. He still turns blue and just falls over and he has a hard time snapping out of the seizures. He is taking 500 mg of Keppra twice a day and 250mg of Depakote three times a day. All together he takes 21 pills a day plus an injection at bedtime. He is very tired and unsteady. He falls all the time and he is getting a helmet to protect his head. He has been eating and I think he has gained some weight. This sweet little boy is amazing. Through everything he continues to give me kisses and always has a smile. I am hoping that he starts to respond to these meds so he feels better.
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