Saturday, December 31, 2005
Christmas, 2005
Christmas 2005 we took you home for the day. The family came up and spent the day and it was beautiful. Mom cooked and we set it up as a buffet so everyone could spend time with you downstairs. When you come home we bring you into the family room which is off the foyer. It was wonderful and you got to see Charlie, he jumped up on the couch and into your lap. It was so cute!
Saturday, October 1, 2005
October 1, 2005
It is now October 1st, your 21st birthday and we are here to celebrate with family and friends. You are under the weather and I am not sure what is going on. You are agitated and running a low grade temp. You seem very uncomfortable in the chair and Anna your nurse suggested we put you to bed. Your temp is 102 and climbing. You continue to be agitated and are very sweaty and moaning a lot. At 7 pm your temp climbed to 105.6 and it was decided to take you to the hospital. By the time we got there you were 107 and very lethargic. You ended up in ICU for a week, they did a spinal tap for Spinal Meningitas which was negative and blood, urine and chest ex-rays to check everything out. Nothing showed up but they have you on IV antibiotics and you stayed in ICU for one week.
We went back to Hartwyck and everything seemed to be going well and you continued to thrive.
We went back to Hartwyck and everything seemed to be going well and you continued to thrive.
Wednesday, August 31, 2005
August, 2005
Mom contacted work and I am returning on August 8th after being away for 4 ½ months. I needed to be with you because of your illnesses. I pray for continued strength and better health.
Summer is now ended and it is fall. The weather is getting cooler and we are spending a lot of time outside. You are continuing to do well with your teacher and are now eating soft foods again. You are still building up your strength and gaining weight. You had lost over 30 lbs. but now you are climbing upward.
Summer is now ended and it is fall. The weather is getting cooler and we are spending a lot of time outside. You are continuing to do well with your teacher and are now eating soft foods again. You are still building up your strength and gaining weight. You had lost over 30 lbs. but now you are climbing upward.
Sunday, July 31, 2005
July, 2005
July 1, 2005, I arrived at Hartwyck and met with Dr. McCagg to discuss your medications and therapies. She is going to be on vacation for a week and wanted to be sure you had everything you need. You were great through the holiday weekend, we went outside on the patio and you got some fresh air and were getting stronger everyday.
The next several weeks you continued to get therapies and you are getting stronger and more alert. The weather is very hot and humid so we have not been going outside. There was a barbecue at night but we stayed inside due to the weather. Mom has to think about going back to work, you are now stable and on the road to recovery. One day at a time Aaron.
The next several weeks you continued to get therapies and you are getting stronger and more alert. The weather is very hot and humid so we have not been going outside. There was a barbecue at night but we stayed inside due to the weather. Mom has to think about going back to work, you are now stable and on the road to recovery. One day at a time Aaron.
Thursday, June 30, 2005
June, 2005
Tuesday, June 2nd... The therapists came in to evaluate you once again. They are not saying much so I have to wait and see. You are doing more each day and getting stronger as each day goes by.
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Friday, June 3rd... The hospital called and you are spiking a temp. You had been doing so well. They are sending you to the hospital for tests. They need to check the pictline and do a catscan. There is a concern there may be something wrong with the shunt. After spending much time there, we went back to Hartwyck. They drew blood, did a chest x-ray and urinalysis.
The next day your temp was 103.5 and they had to put you on a cooling blanket. You were so sick and I was so worried. You have been through so much and my heart aches every time this happens. I put my faith in God but it is so hard sometimes, and I constantly ask why?
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It is now June 6th... You continue to run a temp and the tests now show your liver enzymes are elevated. They called Dr. Medina and he believes it is your gaul bladder. We have to go to the hospital for more tests.
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June 8th... We are going to JFK for further tests and you will be admitted by Dr. Medina. He is trying to get in touch with the surgeon to discuss your case and set up surgery. Unfortunately, they cannot do laproscopic, it will have to be major surjery in the operating room.
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June 9th, 2005 we are now in 2 East at the hospital which is a gastro floor. Dr. Medina wanted you here because you will get special care. We are in a private room which makes it very nice. Dr. Medina is setting up surgery however there are some issues that they need to work on. Your blood coagulation is off and they need to give you injections to correct it. Also, you are having nose bleeds due to the oxygen and they need to correct that as well. So many things to watch for but they are so careful with you and monitor all your vitals and give you so much care.
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June 12th, Mom took the day off and left it up to the men to come down and care for you. I had a bridal shower for my niece and Dad, PopPop and Uncle Tom were here to spend time with you.
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They are continuing to monitor you carefully, today they did more ex-rays of your chest and abdomin. Dr. Hebbe the pulmonary specialist came in to evaluate you for surgery. He is concerned about your blood gases for surgery and wants to do a special blood tests. It means extracting blood from your artery and it is very painful. He asked for my permission and I told him he would know what is best for you and if this is important for him than he had to do it. I did not want to be there so I left and went to the chapel to pray.
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Today is June 16th and the surgeon came to evaluate you and discuss the surgery with me. Dr. Medina was in as well and he is so compassionate and patient. He takes his time and tries to put all my fears to rest. Today you sat up in the chair for 4 hours and you were very alert and vocal. You did very well and seem to be very comfortable. They are giving you Vitamin K injections to increase your blood coagulation so there are no problems in surgery.
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June 17th and you are scheduled for surgery at 3:30. Dad is coming down and PopPop and Grandma as well. They took you to the holding area at 2:30 and the surgery took several hours. You were then taken to recovery for an hour and a half. I stayed until 10 p.m. because you were in a lot of pain from the surgery. The nurse came in to give you pain medication and then you fell asleep.
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June 20th, you are getting stronger and can now sit up again in the chair. You have no temp and your liver enzymes are back to normal. Today they took you for a neutron hydrascan that takes 4 hours. They needed to be sure you were free of all stones and blockages.
The doctor’s are consulting about putting in a porta-cath. You are having such a hard time with pictlines and IV’s and you need to be on antibiotics for quite a while.
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Wednesday, June 22nd, you started out feeling well and very alert. After being up in the chair for a while you seemed uncomfortable and warm. They put you back in bed and your temp was 102.7. I was very concerned and worried about what was going on with you. The nurse was very upset and put a call into the doctor. They had the infectious disease doctor come in and Dr. Medina ordered a battery of tests.Your cat scan was good but you were not doing well. I left at 7:30 to go home and called the nurse and she said you were not doing well. I then called Barbara and she decided to come and pick me up and drive me back down to see you. We stayed until midnight but it was very re-assuring knowing you were okay. The next day you were still running temps and they decided to do all kinds of cultures. They are all very worried about you and so am I.
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Saturday, June 25th, one day at a time and now they have diagnosed you with blood clots in your legs. Thank God you have a green filter so they need to give you lovenox injections to thin your blood. All of this is due to you being bedridden and not able to move.
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Sunday, June 26th, your hemoglobin level dropped drastically and they now have to give you blood transfusions. The doctor’s have decided to put a porta-cath in to prevent any more problems with pictlines and IV’s. You are scheduled for the 28th of June.
You went in at 9 am and the procedure took 40 minutes. It is June 30th, and after careful evaluations and all tests coming back with positive results they are going to discharge you back to Hartwyck. Only time will tell Aaron, hopefully you will move forward and be able to get stronger and more stable.
*************************
Friday, June 3rd... The hospital called and you are spiking a temp. You had been doing so well. They are sending you to the hospital for tests. They need to check the pictline and do a catscan. There is a concern there may be something wrong with the shunt. After spending much time there, we went back to Hartwyck. They drew blood, did a chest x-ray and urinalysis.
The next day your temp was 103.5 and they had to put you on a cooling blanket. You were so sick and I was so worried. You have been through so much and my heart aches every time this happens. I put my faith in God but it is so hard sometimes, and I constantly ask why?
*************************
It is now June 6th... You continue to run a temp and the tests now show your liver enzymes are elevated. They called Dr. Medina and he believes it is your gaul bladder. We have to go to the hospital for more tests.
*************************
June 8th... We are going to JFK for further tests and you will be admitted by Dr. Medina. He is trying to get in touch with the surgeon to discuss your case and set up surgery. Unfortunately, they cannot do laproscopic, it will have to be major surjery in the operating room.
*************************
June 9th, 2005 we are now in 2 East at the hospital which is a gastro floor. Dr. Medina wanted you here because you will get special care. We are in a private room which makes it very nice. Dr. Medina is setting up surgery however there are some issues that they need to work on. Your blood coagulation is off and they need to give you injections to correct it. Also, you are having nose bleeds due to the oxygen and they need to correct that as well. So many things to watch for but they are so careful with you and monitor all your vitals and give you so much care.
*************************
June 12th, Mom took the day off and left it up to the men to come down and care for you. I had a bridal shower for my niece and Dad, PopPop and Uncle Tom were here to spend time with you.
*************************
They are continuing to monitor you carefully, today they did more ex-rays of your chest and abdomin. Dr. Hebbe the pulmonary specialist came in to evaluate you for surgery. He is concerned about your blood gases for surgery and wants to do a special blood tests. It means extracting blood from your artery and it is very painful. He asked for my permission and I told him he would know what is best for you and if this is important for him than he had to do it. I did not want to be there so I left and went to the chapel to pray.
*************************
Today is June 16th and the surgeon came to evaluate you and discuss the surgery with me. Dr. Medina was in as well and he is so compassionate and patient. He takes his time and tries to put all my fears to rest. Today you sat up in the chair for 4 hours and you were very alert and vocal. You did very well and seem to be very comfortable. They are giving you Vitamin K injections to increase your blood coagulation so there are no problems in surgery.
*************************
June 17th and you are scheduled for surgery at 3:30. Dad is coming down and PopPop and Grandma as well. They took you to the holding area at 2:30 and the surgery took several hours. You were then taken to recovery for an hour and a half. I stayed until 10 p.m. because you were in a lot of pain from the surgery. The nurse came in to give you pain medication and then you fell asleep.
*************************
June 20th, you are getting stronger and can now sit up again in the chair. You have no temp and your liver enzymes are back to normal. Today they took you for a neutron hydrascan that takes 4 hours. They needed to be sure you were free of all stones and blockages.
The doctor’s are consulting about putting in a porta-cath. You are having such a hard time with pictlines and IV’s and you need to be on antibiotics for quite a while.
************************
Wednesday, June 22nd, you started out feeling well and very alert. After being up in the chair for a while you seemed uncomfortable and warm. They put you back in bed and your temp was 102.7. I was very concerned and worried about what was going on with you. The nurse was very upset and put a call into the doctor. They had the infectious disease doctor come in and Dr. Medina ordered a battery of tests.Your cat scan was good but you were not doing well. I left at 7:30 to go home and called the nurse and she said you were not doing well. I then called Barbara and she decided to come and pick me up and drive me back down to see you. We stayed until midnight but it was very re-assuring knowing you were okay. The next day you were still running temps and they decided to do all kinds of cultures. They are all very worried about you and so am I.
************************
Saturday, June 25th, one day at a time and now they have diagnosed you with blood clots in your legs. Thank God you have a green filter so they need to give you lovenox injections to thin your blood. All of this is due to you being bedridden and not able to move.
************************
Sunday, June 26th, your hemoglobin level dropped drastically and they now have to give you blood transfusions. The doctor’s have decided to put a porta-cath in to prevent any more problems with pictlines and IV’s. You are scheduled for the 28th of June.
You went in at 9 am and the procedure took 40 minutes. It is June 30th, and after careful evaluations and all tests coming back with positive results they are going to discharge you back to Hartwyck. Only time will tell Aaron, hopefully you will move forward and be able to get stronger and more stable.
Tuesday, May 31, 2005
May, 2005
Monday, May 2nd... You vomited during the night and now your sodium levels are not consistent. They are holding feeds and monitoring your potassium, sodium levels.
Dr. Dunn is your Endocrinologist, he specializes in body fluids, sugars and diabetes.
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Wednesday, May 4th... You are having a busy day. You are discharging from your left eye and your ears are filled with puss. They called in Dr. Meir, the ENT, for a consult. Dr. Reisman, the gastro Dr. filling in for Dr. Medina, is changing your G tube to what they call a J tube. This will allow feed to go in a different direction and hopefully you will not vomit. You are losing a lot of weight, you have gone from 150 to 125. Your face is so thin and you are so pale.
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Linda, your occupational therapist, comes to visit and she is devastated. All of the therapists come from time to time-Tara, Aubree and friends from BTU. Aubree brought you a beautiful angel and I hung it on the wall by your bedside.*******************
Thursday, May 5th... Dr. Steineke ordered a cat scan and is scheduling surgery for May 6th. They are inserting a shunt which is a permanent drain to keep fluid from building up.
*******************
Friday, May 6th... They scheduled you for 9:30 to have the shunt put in. They took you to the holding area at 7:30 and at 9 took you to the OR. We waited until noon before we got word it was over and you were back in ICU. You had a rough couple of hours coming out of the anesthesia. Once you were beyond the initial trauma they gave you Tylenol and you slept for the rest of the afternoon.
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Monday, May 9th... You are now stable enough to be moved to a different floor. We spent 4 weeks in ICU and now we are going to 3 Central. Mom is a little nervous because you were so well taken care of in ICU and now things will be so different. The Doctor said you are coming along nicely, you are more awake and becoming stronger everyday. The Doctors still have no way of knowing the outcome of your illness, only time will tell.
The next week we spent in 3 Central and you were still having some problems with your feeds and pictlines. They were sitting you up in a chair which was nice for you and much more comfortable than being in bed all the time.
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May 17th... They are making plans for your discharge but they are not sure because there are still issues to resolve.
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Wednesday, May 18th... The day has finally arrived and you are being discharged. They need to put a new pictline in before we go and then we will leave JFK. Carmen is with me and she has been such a good friend to me. She helped me pack up your belongings and we waited for transport.
It is now 7:30 p.m. and we arrived at Hartwyck. David your roommate is screaming and hollering because he does not want you back in his room. The Doctor explained to him that you need special attention and the door has to stay open at night. He enjoys the room by himself and the door can be shut at night. You on the other hand cannot communicate if something is wrong and they need to get to you if something happens. He was absolutely off the wall and out of control. His Mom was there and she apologized and Dave said Aaron did not deserve him as a roommate.
The next day it was decided we were going to be moved to Rm. 225 and share a room with Sean Reilly. Susan and I had become friends and we were very happy about the idea because you and Sean are close in age. Susan and I have gotten to know each other and several times she would come visit you in the hospital. We watch out for each other and our boys.
The next several days and through the Memorial weekend you continue to get stronger. You are still having problems with your feeding tubes but otherwise you have been getting a lot of rest and seem to be very comfortable.
*******************
Tuesday, May 24th... Your speech therapist came in to evaluate you. She was trying to feed you and see if you responded to commands. She was quite pleased and was going to recommend 3x a week for speech therapy.
For the remainder of the week you were seen by your therapists and evaluated for further therapy. There goal is to hopefully get you back to where you were before you got sick. We have been spending time outside because it has been great weather and the fresh air is good for you.
********************
It is now the end of May and the responses have been great. Susan your teacher is noticing you are tracking with your eyes and you are in such great spirits. I pray you will continue to move forward and be able to do all the things you did before and then some.
Dr. Dunn is your Endocrinologist, he specializes in body fluids, sugars and diabetes.
******************
Wednesday, May 4th... You are having a busy day. You are discharging from your left eye and your ears are filled with puss. They called in Dr. Meir, the ENT, for a consult. Dr. Reisman, the gastro Dr. filling in for Dr. Medina, is changing your G tube to what they call a J tube. This will allow feed to go in a different direction and hopefully you will not vomit. You are losing a lot of weight, you have gone from 150 to 125. Your face is so thin and you are so pale.
*******************
Linda, your occupational therapist, comes to visit and she is devastated. All of the therapists come from time to time-Tara, Aubree and friends from BTU. Aubree brought you a beautiful angel and I hung it on the wall by your bedside.*******************
Thursday, May 5th... Dr. Steineke ordered a cat scan and is scheduling surgery for May 6th. They are inserting a shunt which is a permanent drain to keep fluid from building up.
*******************
Friday, May 6th... They scheduled you for 9:30 to have the shunt put in. They took you to the holding area at 7:30 and at 9 took you to the OR. We waited until noon before we got word it was over and you were back in ICU. You had a rough couple of hours coming out of the anesthesia. Once you were beyond the initial trauma they gave you Tylenol and you slept for the rest of the afternoon.
*******************
Monday, May 9th... You are now stable enough to be moved to a different floor. We spent 4 weeks in ICU and now we are going to 3 Central. Mom is a little nervous because you were so well taken care of in ICU and now things will be so different. The Doctor said you are coming along nicely, you are more awake and becoming stronger everyday. The Doctors still have no way of knowing the outcome of your illness, only time will tell.
The next week we spent in 3 Central and you were still having some problems with your feeds and pictlines. They were sitting you up in a chair which was nice for you and much more comfortable than being in bed all the time.
******************
May 17th... They are making plans for your discharge but they are not sure because there are still issues to resolve.
******************
Wednesday, May 18th... The day has finally arrived and you are being discharged. They need to put a new pictline in before we go and then we will leave JFK. Carmen is with me and she has been such a good friend to me. She helped me pack up your belongings and we waited for transport.
It is now 7:30 p.m. and we arrived at Hartwyck. David your roommate is screaming and hollering because he does not want you back in his room. The Doctor explained to him that you need special attention and the door has to stay open at night. He enjoys the room by himself and the door can be shut at night. You on the other hand cannot communicate if something is wrong and they need to get to you if something happens. He was absolutely off the wall and out of control. His Mom was there and she apologized and Dave said Aaron did not deserve him as a roommate.
The next day it was decided we were going to be moved to Rm. 225 and share a room with Sean Reilly. Susan and I had become friends and we were very happy about the idea because you and Sean are close in age. Susan and I have gotten to know each other and several times she would come visit you in the hospital. We watch out for each other and our boys.
The next several days and through the Memorial weekend you continue to get stronger. You are still having problems with your feeding tubes but otherwise you have been getting a lot of rest and seem to be very comfortable.
*******************
Tuesday, May 24th... Your speech therapist came in to evaluate you. She was trying to feed you and see if you responded to commands. She was quite pleased and was going to recommend 3x a week for speech therapy.
For the remainder of the week you were seen by your therapists and evaluated for further therapy. There goal is to hopefully get you back to where you were before you got sick. We have been spending time outside because it has been great weather and the fresh air is good for you.
********************
It is now the end of May and the responses have been great. Susan your teacher is noticing you are tracking with your eyes and you are in such great spirits. I pray you will continue to move forward and be able to do all the things you did before and then some.
Saturday, April 30, 2005
April, 2005
Friday, April 15th, we called the family after we received the news and felt they should know so they could make arrangements to come and see you. Dad and I were supposed to go to a family wedding on Saturday but cancelled.
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Saturday, April 16th, 2005 and there were many visitors that day. Friends, family and people from Hartwyck whom we have bonded with over the past few months.
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Sunday, April 17th, and many more family members are coming to see you. You still have not opened your eyes and are very guarded.
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Monday, April 18th, today is Melissa’s birthday and Mom is going to work to fill out papers for a leave of absence. I need to be with you until we are sure of your condition and what lies ahead.
The remainder of the week was a wait and see. You were tolerating the feed thus far and getting antibiotics and fluids. You are still very sick and not responding but for the most part stable. On Friday, April 22nd they took you down for another MRI and the results were worse.They are having much difficulty with your veins and drawing blood and IV’s. You are on your 4th pictline and even now they are not sure it will hold up.
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Tuesday, April 26th, they did an MRI to map your brain for surgery. You were scheduled for surgery on the 28th of April.
Mom arrived at 6 a.m., you were scheduled for surgery at 9. Dad and I took you to the holding area and waited with you until 10 a.m. You were taken to the OR and the surgery took 4 ½ hours.
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One of the things they told us was they were trying a new technique and piece of equipment during your surgery. A device with a camera on the end of it that has the ability of extracting fluid and puss. There were quite a few people watching and observing and it was video taped for future use. During the procedure they extracted viles of puss in the ventricals that was keeping fluid from passing through.
**********************
The surgery was a success and now we prayed for your recovery. They had no way of knowing the severity of the damage to your brain. You could recover and be better or lose some of what you had gained.
**********************
Friday, April 29th, 2005 you had a small seizure which they said is not uncommon after brain surgery. The rest of the day you slept and were very quiet.
The weekend visitors came to see you, family and friends. The Caruso’s come every weekend from Sussex to spend time and visit. They are such good people and good friends.
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Saturday, April 16th, 2005 and there were many visitors that day. Friends, family and people from Hartwyck whom we have bonded with over the past few months.
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Sunday, April 17th, and many more family members are coming to see you. You still have not opened your eyes and are very guarded.
**********************
Monday, April 18th, today is Melissa’s birthday and Mom is going to work to fill out papers for a leave of absence. I need to be with you until we are sure of your condition and what lies ahead.
The remainder of the week was a wait and see. You were tolerating the feed thus far and getting antibiotics and fluids. You are still very sick and not responding but for the most part stable. On Friday, April 22nd they took you down for another MRI and the results were worse.They are having much difficulty with your veins and drawing blood and IV’s. You are on your 4th pictline and even now they are not sure it will hold up.
********************
Tuesday, April 26th, they did an MRI to map your brain for surgery. You were scheduled for surgery on the 28th of April.
Mom arrived at 6 a.m., you were scheduled for surgery at 9. Dad and I took you to the holding area and waited with you until 10 a.m. You were taken to the OR and the surgery took 4 ½ hours.
*********************
One of the things they told us was they were trying a new technique and piece of equipment during your surgery. A device with a camera on the end of it that has the ability of extracting fluid and puss. There were quite a few people watching and observing and it was video taped for future use. During the procedure they extracted viles of puss in the ventricals that was keeping fluid from passing through.
**********************
The surgery was a success and now we prayed for your recovery. They had no way of knowing the severity of the damage to your brain. You could recover and be better or lose some of what you had gained.
**********************
Friday, April 29th, 2005 you had a small seizure which they said is not uncommon after brain surgery. The rest of the day you slept and were very quiet.
The weekend visitors came to see you, family and friends. The Caruso’s come every weekend from Sussex to spend time and visit. They are such good people and good friends.
April, 2005
April 14th, 2005 and it was decided to have you go to JFK hospital and meet with Dr. Medina. He is a gastro specialist and he wanted to evaluate you because of the excessive vomiting. He ran routine tests and then decided to have a cat scan done of your head. We had been in the emergency room from 2 p.m until midnight. We first went to cat scan and then they took you to the Pediatrics wing. I went home at 2 a.m. to get some sleep but woke early and came back to see you. I was informed that there was a problem with the cat scan and they called in a Neurologist. I then called Dad to come to the hospital because I felt it was serious and I did not want to be there alone.
Dr. Mitchell came in at 5 p.m. and informed us of the seriousness of the situation. He said you had fluid on the brain and if they did not put a drain in as soon as possible you could die. They had you rushed to ICU and had the room set up for them to put a drain in your forehead to relieve the pressure. I just remember how weak you were and unresponsive. You had lost all your strength and ability to move or speak.
April 15th, 2005 and you were not responding to the decrease in pressure. Most of the time when pressure is relieved the patient becomes responsive and will open their eyes. You did not and there was much concern. It was decided at 3 p.m. you would go to cat scan and MRI and have further testing. They said it would take approximately 3 hours and we should go get something to eat and then go to the waiting room.
At 6 p.m. the nurse came in and escorted us to a conference room where we met with Dr. Mitchell. He informed us it was very serious and you may not make it through. There was a very massive infection and blockage in the ventricals. They were doing everything they could and had you on massive doses of antibiotic. I cried so hard and Dad was very upset as well. We had to think about a DNR, we believed in our hearts that if it was meant you would not recover and live your life as a vegetable we did not want you to be resuscitated.
I truly believed it was in God’s hands and all I could do was pray and be there for you. I decided to take a leave of absence from work and came every day to be with you and make sure you were well taken care of. The days were long and very scary at times. You had a team of Doctors working together to get you well.
Dr. Mitchell came in at 5 p.m. and informed us of the seriousness of the situation. He said you had fluid on the brain and if they did not put a drain in as soon as possible you could die. They had you rushed to ICU and had the room set up for them to put a drain in your forehead to relieve the pressure. I just remember how weak you were and unresponsive. You had lost all your strength and ability to move or speak.
April 15th, 2005 and you were not responding to the decrease in pressure. Most of the time when pressure is relieved the patient becomes responsive and will open their eyes. You did not and there was much concern. It was decided at 3 p.m. you would go to cat scan and MRI and have further testing. They said it would take approximately 3 hours and we should go get something to eat and then go to the waiting room.
At 6 p.m. the nurse came in and escorted us to a conference room where we met with Dr. Mitchell. He informed us it was very serious and you may not make it through. There was a very massive infection and blockage in the ventricals. They were doing everything they could and had you on massive doses of antibiotic. I cried so hard and Dad was very upset as well. We had to think about a DNR, we believed in our hearts that if it was meant you would not recover and live your life as a vegetable we did not want you to be resuscitated.
I truly believed it was in God’s hands and all I could do was pray and be there for you. I decided to take a leave of absence from work and came every day to be with you and make sure you were well taken care of. The days were long and very scary at times. You had a team of Doctors working together to get you well.
Thursday, March 31, 2005
March, 2005
March 2005, you are running low grade temps and are more congested. They have done blood work and chest x-rays and are watching you very carefully. Unfortunately, you are not getting better and continue to get more congested. They have decided to put a pictline in so they could give you IV fluids and antibiotics.
***********************
March 20, 2005 you are admitted to the hospital with pneumonia and a very serious sinus infection. The first several days were very scary and they continually suctioned you and were very concerned about your lungs. The specialist wanted to re-traech you and put the tube in your throat but I felt you needed a little more time. Well, I was right and you fought very hard and came through just fine. I was still very worried because you were very weak and sluggish all the time. Even though the pneumonia and sinus infection cleared up you were not yourself.
We went back to the center after 2 weeks in the hospital and you were very weak. You started to vomit and continued every day for the next 10 days or so. They continued you on IV fluid and antibiotic but you continued to get sick. You were having difficulty with your pictlines and we had to replace them several times. Your veins were very small and it was most difficult keeping in a IV.
***********************
March 20, 2005 you are admitted to the hospital with pneumonia and a very serious sinus infection. The first several days were very scary and they continually suctioned you and were very concerned about your lungs. The specialist wanted to re-traech you and put the tube in your throat but I felt you needed a little more time. Well, I was right and you fought very hard and came through just fine. I was still very worried because you were very weak and sluggish all the time. Even though the pneumonia and sinus infection cleared up you were not yourself.
We went back to the center after 2 weeks in the hospital and you were very weak. You started to vomit and continued every day for the next 10 days or so. They continued you on IV fluid and antibiotic but you continued to get sick. You were having difficulty with your pictlines and we had to replace them several times. Your veins were very small and it was most difficult keeping in a IV.
Monday, February 28, 2005
February, 2005
It is now February, 2005 and you are not feeling well. You are nasally and seem to be very sluggish. The Dr. has you on Flonase to help with the nasal congestion and you seem to be better.
Monday, January 31, 2005
January, 2005
It is now 2005, when I look back to last year it was quite adventurous and very exciting. You left Wanaque Nursing and came to JFK where you have been making great strides. They have decreased some of your therapies because they said you needed a break and you were not being consistent. However, you were eating pureed dinners at night and saying a few words and communicating.
We found a wonderful teacher for you, her name is Susan and she is more than anyone could possibly ask for. She is a stay at home Mom and is looking for part time. She comes at 9:30 and stays until 12 or 12:30. We purchased Big Mac switches that are programmed to say yes or no and you are using them to communicate. She brings you to the computer and is guiding you with the mouse to do different things and you are doing well.
There is a special woman, her name is Celeste and she is very knowledgeable working with disabled young people. She came to the center one morning and worked with Susan and observed you in action. She was very impressed and encouraged by some of what she saw and what you were able to do. She is putting together a basket of goodies, things for you to smell and touch. She is making suggestions to Susan and will be coming back to work with you again. She is so excited and so am I. I am so proud of you and how hard you are working
We found a wonderful teacher for you, her name is Susan and she is more than anyone could possibly ask for. She is a stay at home Mom and is looking for part time. She comes at 9:30 and stays until 12 or 12:30. We purchased Big Mac switches that are programmed to say yes or no and you are using them to communicate. She brings you to the computer and is guiding you with the mouse to do different things and you are doing well.
There is a special woman, her name is Celeste and she is very knowledgeable working with disabled young people. She came to the center one morning and worked with Susan and observed you in action. She was very impressed and encouraged by some of what she saw and what you were able to do. She is putting together a basket of goodies, things for you to smell and touch. She is making suggestions to Susan and will be coming back to work with you again. She is so excited and so am I. I am so proud of you and how hard you are working
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