The holidays are approaching and it is going to be more difficult this year without Grandma. You are doing well and have been very calm and alert.
Thanksgiving we will come and spend with you and then go to Aun’t Trudy’s which is tradition every year.
This year for Christmas we will be bringing you to Aun’t Ginny’s. We want a very quiet holiday this year because it is going to be difficult for everyone. PopPop is very sad and does not want to be around a lot of people. We are bringing you to Aun’t Ginny’s for the day and I am looking forward to it.
December 18th, 2006... I had to work late for closing and today is your Christmas party at the center. I am disappointed I cannot be there but Melissa is coming down to be with you. Melissa said the party was a great success and you were great. I also found out Andrea came and spent the time with you and Melissa. How great was that. I am sorry I missed her.
December 22nd, 2006... It is my birthday and you are having a rough time. You are having episodes of brain storming that are excessive and very difficult to calm you down. I was at dinner with Dad and Melissa when I got a call from the hospital that you were not doing well.
You continued to have a very rough night and I was not sure if we would be able to take you for Christmas. Unfortunately, you are not doing well and continue with the brain storming. Christmas Eve, I asked Cheryl who is an aide to stay with you from 3-7 so I could be with the family for Christmas Eve. It was difficult leaving you knowing you were so tense but Cheryl reassured me she would take good care of you.
December 25th, 2006... I received a call at 7 a.m. from the nurse informing me you were brain storming during the night and it was not slowing down. I had no choice but to cancel the transport and not take you to Aun’t Ginny’s. I was very disappointed and sad for you. Dad and I came to visit you and you were very agitated. Nadia was staying with you so we could go to dinner. When we left you were restless and warm but Nadia was going to keep an eye on you and call me later.
You continued to brain storm during the night until the day after Christmas. Finally, December 26th in the evening you calmed down, you were comfortable and had no temp. The episodes lasted 5 days and you had to be on morphine and ativan.
Dr. McCagg has decided to leave you on morphine as a preventive and hopefully control the brainstorming. She is also adding Ridlin to help stimulate you and hopefully make you more alert.
For the remainder of the year you were very calm, slept for the next two days and was unresponsive. You would open your eyes but you were very lethargic. As each day went by you became more alert and more responsive. It takes a long time for the medication to get out of your system.
As each day went by you became stronger and more alert. The Ridlin with the morphine seems to be a good combination.
Andrea, your teacher for the summer asked me to write a history telling all about you. I was not sure why but I decided it would be good therapy for me to do so.
Sunday, December 31, 2006
Sunday, October 1, 2006
October 1, 2006
October 1, 2006 and you are now 22 years old. I don’t know what it is with Birthday’s but you are very uncomfortable in the chair and extremely agitated. The nurse gave you Ativan to calm you. You are still having difficulty with temps and agitation. They continue to do testing and put you on IV fluid so you don’t dehydrate.
Saturday, September 30, 2006
September, 2006
September 2006... Grandma is much weaker and we now have Hospice coming in frequently and for the most part she is bed-ridden. One day at a time, how I wish you could see her one more time. One thing I had hoped for was for you to be able to tell her you Love her but it just was not meant to be.
You continue to brain storm and the episodes seem to last longer and your temps are high.
September 26th, 2006... I am at work and at 9:30 I received a call from Uncle Beav, he tells me Mommy is gone. I cried so hard but I was able to compose myself and drive to Grandma’s house. You were in your room and I went in to find family sitting by your bedside. I embraced my brother’s and sister and cried with PopPop. The viewing is set for Thursday night and Friday, she will be buried Saturday. Such a sad time, I am trying to balance my time with PopPop and you. We had to go to make arrangements and meet with the Funeral Director.
You continue to brain storm and the episodes seem to last longer and your temps are high.
September 26th, 2006... I am at work and at 9:30 I received a call from Uncle Beav, he tells me Mommy is gone. I cried so hard but I was able to compose myself and drive to Grandma’s house. You were in your room and I went in to find family sitting by your bedside. I embraced my brother’s and sister and cried with PopPop. The viewing is set for Thursday night and Friday, she will be buried Saturday. Such a sad time, I am trying to balance my time with PopPop and you. We had to go to make arrangements and meet with the Funeral Director.
Thursday, August 31, 2006
Summer, 2006
Summer is coming and I spoke with Fran from the Middlesex Education Commission and she is finding someone for the summer months. I am so happy and look forward to her starting soon.
Well, I received a call from Fran and she recommended Andrea Daunarumma who is coming to meet us this week. She is a teacher at the Carteret High School in Special Education. She arrived about 1 pm and she is so nice to talk to and was wonderful with you. She seems to get down to your level and knows what you like and will do a wonderful job with you. She is starting on the 26th of June and will be here from 12:30 to 3 pm. From Monday to Thursday.
Grandma Ricky has been very sick and is not expected to be with us for much longer. She is getting weaker and requires more care. Mom is going one or two nights a week to sleep there and help PopPop. It is very exhausting but necessary.
Andrea’s last day is going to be August 18th, she needs time to get ready for school. She has the most beautiful personality and was compassionate, patient and caring with Aaron. She touched our hearts and brought so much joy to both of us. We will miss her.
Well, I received a call from Fran and she recommended Andrea Daunarumma who is coming to meet us this week. She is a teacher at the Carteret High School in Special Education. She arrived about 1 pm and she is so nice to talk to and was wonderful with you. She seems to get down to your level and knows what you like and will do a wonderful job with you. She is starting on the 26th of June and will be here from 12:30 to 3 pm. From Monday to Thursday.
Grandma Ricky has been very sick and is not expected to be with us for much longer. She is getting weaker and requires more care. Mom is going one or two nights a week to sleep there and help PopPop. It is very exhausting but necessary.
Andrea’s last day is going to be August 18th, she needs time to get ready for school. She has the most beautiful personality and was compassionate, patient and caring with Aaron. She touched our hearts and brought so much joy to both of us. We will miss her.
Sunday, April 30, 2006
Easter, 2006
Easter 2006, once again you became ill. You and I ended up at the hospital and they found a bacterial infection that required you to be quarantined. We spent one week in the hospital and returned to Hartwyck to a private room. Mom was very upset because they put you in a room at the end of a hall alone. That bothered me because it was so isolated and you were so sick. I asked Matt to come and spend time with you during the day while I was at work so I did not have to worry about you being alone. He was great and fortunately his schedule allowed him to be there everyday from 11- 2. I arrived at 2:30 and you would be up in the chair and very relaxed. You spend two weeks in quarantine and then you were allowed to go back with Sean. What a blessed day that was!
Susan had to leave to pursue teaching full time so you are without a teacher. Mom is trying to find another but it has been very difficult due to daytime hours and you are only allowed 10 hours a week.
Susan had to leave to pursue teaching full time so you are without a teacher. Mom is trying to find another but it has been very difficult due to daytime hours and you are only allowed 10 hours a week.
Tuesday, February 28, 2006
February, 2006
February 2006, you were very agitated and seemed bloated and in pain. The doctors were afraid you had an elias, it is a blockage in the intestines. Because of the blockage you were retaining fluids and later that night you vomited and had to be rushed to the hospital. I got a call at 2 am and it took me an hour to get there so by that time you were already in the emergency room. When I arrived they had drained your stomach and were running tests. I was so scared when I saw you because you were having a hard time breathing and on oxygen. You were moaning a lot and the nurse said your abdomen was filled with fluid. While I was there you vomited violently and it all went in your lungs.
The nurse said it was going to be a long time before we got a room so they put us in a holding area. We were there overnight and waited for Dr. Medina to arrive. You were so sick Aaron and Mom was really scared this time. On Friday evening they moved you to 2 North, when I arrived they said you were having a lot of difficulty breathing and Dr Sarraf the pulmonary specialist was on his way. Dr. Sarraf did a bronchoscopy to relieve a lot of the congestion and look in your lungs. It was decided you should go to ICU and then they put you on a respirator. I remember thinking how sick you were and seeing you hooked up to the machines was devastating. You had come so far and were doing so well and now this.
Dr. Sarraf came in and he said you had a very serious bacterial infection in your lungs and he wanted me to consider re-traeching you. I was devastated at the thought of you having a traech again. That to me would have been a major set back. I decided to give you more time on the respirator and felt you could fight this. The respiratory therapists were wonderful and told me to hang in there and give you the time you need to fight this. I listened to them and followed my heart and knew I was doing the right thing. I prayed to God and asked him to give you strength and get you through this. Nine days later you coughed it out on your own and never had to be put back on the machine again. You are so amazing. We spent 3 weeks in ICU and it was an uphill battle for you but once again you came through.
After returning to Hartwyck you continued to spike temps of 105 and Dr. McCagg said it was brain storming. They would run the usual tests and put you on IV fluids. They also had to put you on a cooling blanket to help bring the temp down. You had to be given morphine and Ativan to help calm you. It was most difficult to watch and not much I could do to help you except to comfort you.
The nurse said it was going to be a long time before we got a room so they put us in a holding area. We were there overnight and waited for Dr. Medina to arrive. You were so sick Aaron and Mom was really scared this time. On Friday evening they moved you to 2 North, when I arrived they said you were having a lot of difficulty breathing and Dr Sarraf the pulmonary specialist was on his way. Dr. Sarraf did a bronchoscopy to relieve a lot of the congestion and look in your lungs. It was decided you should go to ICU and then they put you on a respirator. I remember thinking how sick you were and seeing you hooked up to the machines was devastating. You had come so far and were doing so well and now this.
Dr. Sarraf came in and he said you had a very serious bacterial infection in your lungs and he wanted me to consider re-traeching you. I was devastated at the thought of you having a traech again. That to me would have been a major set back. I decided to give you more time on the respirator and felt you could fight this. The respiratory therapists were wonderful and told me to hang in there and give you the time you need to fight this. I listened to them and followed my heart and knew I was doing the right thing. I prayed to God and asked him to give you strength and get you through this. Nine days later you coughed it out on your own and never had to be put back on the machine again. You are so amazing. We spent 3 weeks in ICU and it was an uphill battle for you but once again you came through.
After returning to Hartwyck you continued to spike temps of 105 and Dr. McCagg said it was brain storming. They would run the usual tests and put you on IV fluids. They also had to put you on a cooling blanket to help bring the temp down. You had to be given morphine and Ativan to help calm you. It was most difficult to watch and not much I could do to help you except to comfort you.
Tuesday, January 31, 2006
January, 2006
It is now 2006 and you are starting the new year off with a bang! You seem more alert and vocalizing more and trying so hard to communicate. Sometimes it seems as though you are trying to break through this wall of silence and wake up. You are extremely agitated in the chair at times and constantly pushing yourself out of position.
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