Wednesday May 8, 2013
Aaron had to be at the hospital at 7:30am this morning. He was called back to pre op around 8am. They checked him and said he was good. I talked with Dr S and the anesthesiologist. They were concerned about his seizures and wanted to make sure that he had him morning meds. He fell alseep while I was holding him and looked so sweet. I hated handing him to the nurse. I kissed him and told him I loved him and he was taken to the OR.
Dr S finally (25 minutes later) came and talked with me., He said it went very well and that Aaron did great. He said they would call me back in about 5 minuted to see him. I was so relieved. I gathered up my things and waited for my pager to go off. 5, 10, 15 20 minutes later it still has not gone off. I am starting to get worried but remembered Dr S said he did fine. 26 minutes later it goes off. I am taken back to recovery. She keeps walking and we pass Aaron's wheelchair in the hall. We go out the door and across the hall. She takes me through another door and he is still hooked up to all of the monitors. He is still sleeping. The nurse says the Dr has ordered a breathing treatment and X ray. We think he aspirated. As she says this his alarms go off for heart rate and oxygen level. His heart rate his 50 and his oxygen level is going down and he is already on 10 liters. I can't think. I just remember how sick he was the last time he aspirated. They do the breathing treatment but his lung is the same. They do the chest xray...its clear.... what!?! The Drs listen to him and he is all clear! We can't believe it. They were already planning on him staying. His heart rate is still low and his oxygen level is still low but his lungs are clear! They are able to ween him down to 2 liters and he is sent to the other side of recovery to wake up more. After a little while he starts to wake up more. He begins to cough and his heart rate goes up and his oxygen level rises. He is going to be ok! I feed him to make sure that his button is working. He does great and we are finally discharged. MIRACLE
needing lots of oxygen
waking up and doing better
Friday, May 10, 2013
neuro with Tae
May 2, 2013
Tae had his appointment with Dr O (neurologist). He is doing great. I have not noticed any seizure activity since he has been with us. He is on a very low dose of Keppra (300 mg bid). Dr O doesn't want to change anything but wants me to know that he is on a very low dose and he has gained some weight too. I am just going to keep watching him and hoping that his dose is enough to prevent any seizures.
Tae had his appointment with Dr O (neurologist). He is doing great. I have not noticed any seizure activity since he has been with us. He is on a very low dose of Keppra (300 mg bid). Dr O doesn't want to change anything but wants me to know that he is on a very low dose and he has gained some weight too. I am just going to keep watching him and hoping that his dose is enough to prevent any seizures.
Surgical appointment
Tuesday April 30, 2013
Aaron saw his surgeon, Dr S this morning. He was pleased with his site and scheduled his next procedure for Wednesday May 8th. He is going to replace his Peg tube with a BARD button and do another biopsy. We are praying that his esophagus has healed and another surgery will not be needed. I am very nervous for Aaron to be put to sleep again. It took him a very long time to wake up the last time and I don't want him to be admitted to the hospital this time. I am so thankful for his group of drs. They are the best!
LOVE this! A boy and his monkey
Aaron saw his surgeon, Dr S this morning. He was pleased with his site and scheduled his next procedure for Wednesday May 8th. He is going to replace his Peg tube with a BARD button and do another biopsy. We are praying that his esophagus has healed and another surgery will not be needed. I am very nervous for Aaron to be put to sleep again. It took him a very long time to wake up the last time and I don't want him to be admitted to the hospital this time. I am so thankful for his group of drs. They are the best!
LOVE this! A boy and his monkey
Ist school prject
Monday April 29, 2013
Nick's first school project was due today. He worked very hard on it and was excited to take it to school. His school had them do a community project instead of the standard science fair project. The theme was Making a Difference. The things he came up with just amazed me. He has such a kind heart and so much empathy for a 7 year old. He truly wants to make the world a better place. I am so proud of him.
Nick's first school project was due today. He worked very hard on it and was excited to take it to school. His school had them do a community project instead of the standard science fair project. The theme was Making a Difference. The things he came up with just amazed me. He has such a kind heart and so much empathy for a 7 year old. He truly wants to make the world a better place. I am so proud of him.
Dr appointment
Friday April 26, 2013
Aaron saw Dr C today. He weighs 46 pounds!! Dr C said he looks good and that his heart rate was ok. He gave him a antibiotic for a secondary skin infection on his chin from drooling. He will see him again next month. I can't believe how much weight he has gained. He looks so much better. I love his cheeks!! Since he got his Peg tube and has gained some weight he has been sleeping a little better at night.
so sweet
Aaron saw Dr C today. He weighs 46 pounds!! Dr C said he looks good and that his heart rate was ok. He gave him a antibiotic for a secondary skin infection on his chin from drooling. He will see him again next month. I can't believe how much weight he has gained. He looks so much better. I love his cheeks!! Since he got his Peg tube and has gained some weight he has been sleeping a little better at night.
so sweet
great news
April 24, 2013
Taevon 's Dr called and said his sodium level was much better He still has some irregular blood cells that they are going to watch. His main problem is just anemia. What a relief. He will have some more blood work in a few weeks.
Taevon 's Dr called and said his sodium level was much better He still has some irregular blood cells that they are going to watch. His main problem is just anemia. What a relief. He will have some more blood work in a few weeks.
1st invitation
Keagan received his first invitation to a friend's birthday party. He was beyond excited especially because it was from his best friend Alexa. He couldn't stop talking about about going. He spent forever picking out the perfect gift and finally decided on a Cat in the Hat game and some bubbles.
He had the best time playing with all of his friends at the party. He loved all of the games and the carnival theme. He won a Cat in the Hat hat and medal. I am so happy that he finally got to go to his first party. He feels like such a big boy now.
He had the best time playing with all of his friends at the party. He loved all of the games and the carnival theme. He won a Cat in the Hat hat and medal. I am so happy that he finally got to go to his first party. He feels like such a big boy now.
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