My parents met with the medical team yesterday. On January 6, Paul will have an MRI to check his optic nerve and to hopefully determine a visual prognosis. The following day, he will have surgery to repair the air leak in his brain. He has to have part of his skull removed and they will be removing some tissue from his thigh to fill the area in his brain. After the procedure, they have to wait for the muscle to shrink before they put the bone back in his head. The doctor has told my parents that he will be able to fly home three weeks after the operation and this is very good news.
Paul is still struggling with a diminished appetite. He does not want to eat much at all and is losing a lot of weight so they will be increasing his PEG tube feeds. He continues to progress with communication. He has been talking about his next surgery and acknowledges that it involves his head, but he does not ask why or what is being done. He is walking well and was able to shave independently with an electric razor. He can also brush his teeth, but still tires very easily and sleeps a lot. We are very please to have recieved this new timeline because we were previously told that it may be another two months before he could return home.
My folks want to again express their gratitude for all of the letters and support.
Tara
Tuesday, December 29, 2009
Saturday, December 19, 2009
Week of 12.14.09
Paul went back to the Alfred Hospital today to have his left arm cast removed and a CT scan done. My parents had a meeting with the Neurosurgeon who explained the CT scan results which revealed that Paul still has air in the front part of his brain.
My Mom has told me Paul has been very pleasant lately, sleeping well at night, and eating a bit better. My Dad brings him watermelon every morning and he loves it! Today he asked my Dad about how various sports teams were doing. He also talked to Ryan on the phone for a few minutes and that went very well.
On Friday, Paul went for another CTscan and to an Ear, Nose and Throat specialist to determine how this air leak can be fixed. They are hoping to be able to do a procedure through his nose to fill this in. He will not be able to fly home until this is fixed.
My folks are very appreciative of all of the positive thoughts and email they have recieved. Keep it coming!
Tara
My Mom has told me Paul has been very pleasant lately, sleeping well at night, and eating a bit better. My Dad brings him watermelon every morning and he loves it! Today he asked my Dad about how various sports teams were doing. He also talked to Ryan on the phone for a few minutes and that went very well.
On Friday, Paul went for another CTscan and to an Ear, Nose and Throat specialist to determine how this air leak can be fixed. They are hoping to be able to do a procedure through his nose to fill this in. He will not be able to fly home until this is fixed.
My folks are very appreciative of all of the positive thoughts and email they have recieved. Keep it coming!
Tara
Sunday, December 6, 2009
12.6.09
I recieved this email from my mom last night:
HI Tara,
It is the weee hours of the night for you while I am writing this. I'd rather call you but since its so late I can't. The past 2 days have been great for Paul: He has been eating a decent amount of 2 of his meals each day, (along with the tastykakes that Jeff Duvilla sent him)!! They were a big hit with Paul. Butterscotch krimpets and peanut butter tandykakes!! He will eat about 1/2 of one cake after his meal. Then Dad asks him if he knows who sent them and he answers "Jeff". He also says "mmmm good". He has been out of his room and sitting in the lounge here a couple of times now. He stays for about 15 minutes then gets tired and asks to go back to his room. He usually falls right to sleep. It is so nice to see him wanting to do this:) He has been mentioning not being able to see even more often now. We tell him he cant see yet, and he is o.k. He is definitely the same Paul when it comes to shower time, when the nurses try to get him in there he says "no not today , maybe later or tomorrow. This week he will be getting his arm supports off!!! He will be thrilled after this happens.
Oh forgot to tell you , the other night when the nurse was helping him back in bed, he told her he really wanted to sleep in his tent!! He seem disappointed when she told him his tent was not here and that he had to sleep in the bed.
The other day he asked me if you were here....... it came out of no where, we had not mentioned your name. As I thought about it I realized that he has never yet asked us if anyone in particular was there.
The only thing he has done in the past is to acknowledge someone when they came in the room after they introduced themselves.
I am hoping we can find out more info. on when Paul can fly home soon. Kirsten said you need to make your flight arrangements soon. Have to get off now. Love Mom
HI Tara,
It is the weee hours of the night for you while I am writing this. I'd rather call you but since its so late I can't. The past 2 days have been great for Paul: He has been eating a decent amount of 2 of his meals each day, (along with the tastykakes that Jeff Duvilla sent him)!! They were a big hit with Paul. Butterscotch krimpets and peanut butter tandykakes!! He will eat about 1/2 of one cake after his meal. Then Dad asks him if he knows who sent them and he answers "Jeff". He also says "mmmm good". He has been out of his room and sitting in the lounge here a couple of times now. He stays for about 15 minutes then gets tired and asks to go back to his room. He usually falls right to sleep. It is so nice to see him wanting to do this:) He has been mentioning not being able to see even more often now. We tell him he cant see yet, and he is o.k. He is definitely the same Paul when it comes to shower time, when the nurses try to get him in there he says "no not today , maybe later or tomorrow. This week he will be getting his arm supports off!!! He will be thrilled after this happens.
Oh forgot to tell you , the other night when the nurse was helping him back in bed, he told her he really wanted to sleep in his tent!! He seem disappointed when she told him his tent was not here and that he had to sleep in the bed.
The other day he asked me if you were here....... it came out of no where, we had not mentioned your name. As I thought about it I realized that he has never yet asked us if anyone in particular was there.
The only thing he has done in the past is to acknowledge someone when they came in the room after they introduced themselves.
I am hoping we can find out more info. on when Paul can fly home soon. Kirsten said you need to make your flight arrangements soon. Have to get off now. Love Mom
Saturday, December 5, 2009
12.5.09
Hello everyone, I haven't heard any updates from my parents, but I want to share a note that I recieved from Paul's friend Amy who visited him last weekend:
Hi Tara,
I wanted to send you a note after visiting with Paul last weekend. I haven't had internet access this week but wanted you to know that I had a really promising visit with him on Sunday. I saw him for a bit on Saturday and he knew who I was and we had a brief conversation.
On Sunday night I visited him and we walked down the hall twice and he had extended moments of absolute clarity on what had happened and where we were. He is becoming more aware of the bandages on his arms and is frustrated that no one will remove them. But I think it is also a sign that he is becoming more aware of his body and injuries. I fed him some dinner and gave him a foot rub and he was awake and alert for about 1.5 hours. He made statements that expressed that he was aware of his state. For example, he would say after sitting up for a period of time, "I really feel like hell...my whole body hurts." Also, on our walks, which he was walking very quickly and had a lot of energy, he said "you have no idea what is going through my mind right now...all my thoughts are scattered."
There were also moments where he was truly Paul. He had a banana energy drink that tasted awful. I told him he should really drink it b/c he needs the energy and he said if I taste it and like it he would drink more. :) I didn't like it either.
I thought of you that night and how much you would like to be there with him and I just wanted to tell you this. I hope you get to see him over the holidays and I truly believe, though at times progree is slow, Paul will return to us.
Amy
Hi Tara,
I wanted to send you a note after visiting with Paul last weekend. I haven't had internet access this week but wanted you to know that I had a really promising visit with him on Sunday. I saw him for a bit on Saturday and he knew who I was and we had a brief conversation.
On Sunday night I visited him and we walked down the hall twice and he had extended moments of absolute clarity on what had happened and where we were. He is becoming more aware of the bandages on his arms and is frustrated that no one will remove them. But I think it is also a sign that he is becoming more aware of his body and injuries. I fed him some dinner and gave him a foot rub and he was awake and alert for about 1.5 hours. He made statements that expressed that he was aware of his state. For example, he would say after sitting up for a period of time, "I really feel like hell...my whole body hurts." Also, on our walks, which he was walking very quickly and had a lot of energy, he said "you have no idea what is going through my mind right now...all my thoughts are scattered."
There were also moments where he was truly Paul. He had a banana energy drink that tasted awful. I told him he should really drink it b/c he needs the energy and he said if I taste it and like it he would drink more. :) I didn't like it either.
I thought of you that night and how much you would like to be there with him and I just wanted to tell you this. I hope you get to see him over the holidays and I truly believe, though at times progree is slow, Paul will return to us.
Amy
Tuesday, December 1, 2009
12.1.09
Friends and family:
I have some positive news to spread today. I am learning that this process, much like life, is filled with a lot of ups and downs. Paul is slowly coming out of the amnesia. He seems to be more and more aware every day. My Mom said he had a really good day yesterday. He was not agitated and sat outside with my parents for a short while. He gets tired very quickly, so he can only engage in talking or an activity for about five to ten minutes.
Since many people have been asking me to talk more about the minutiae or small details of Paul's abilities, I will tell you what I know. I was able to get some clarification on his walking ability today. He's been walking down the hall and back with only contact guard or guidance, he does not need physical assistance with walking. As I've mentioned before, some moments he is really alert and aware and others not so much. My Mom said he asked my Dad to take him to the bathroom yesterday and talked to him about the Phillies and the Eagles. He still thinks the Phillies are in the playoffs, but that makes sense as it was around that time that he had the accident. He also talks a lot like he's at work. He'll say things like, "How many kids do we have coming in today?" and he'll say to my parents, "You guys need to leave because I have to go to a team meeting."
A sad note is that he has started to ask about his vision. He knows he can't see, but he doesn't ask why yet. He just says things like, "Mom why are you working in the dark down here?" or "Give me my glasses" or "give me a flashlight, I know I have one in my bag over there" or "turn on the lights." When he does this, the staff told my parents to be honest with him and tell him he can't see right now. When they say that he does not ask why. He has also been perseverating on his arm casts and is difficult to redirect when it comes to this topic. He continuously asks when they will be taken off and at times gets really angry that they are there.
He was medicated last night in order to help him sleep and he seems to be improving with better sleep. He has also started to eat small amounts again.
Tara
I have some positive news to spread today. I am learning that this process, much like life, is filled with a lot of ups and downs. Paul is slowly coming out of the amnesia. He seems to be more and more aware every day. My Mom said he had a really good day yesterday. He was not agitated and sat outside with my parents for a short while. He gets tired very quickly, so he can only engage in talking or an activity for about five to ten minutes.
Since many people have been asking me to talk more about the minutiae or small details of Paul's abilities, I will tell you what I know. I was able to get some clarification on his walking ability today. He's been walking down the hall and back with only contact guard or guidance, he does not need physical assistance with walking. As I've mentioned before, some moments he is really alert and aware and others not so much. My Mom said he asked my Dad to take him to the bathroom yesterday and talked to him about the Phillies and the Eagles. He still thinks the Phillies are in the playoffs, but that makes sense as it was around that time that he had the accident. He also talks a lot like he's at work. He'll say things like, "How many kids do we have coming in today?" and he'll say to my parents, "You guys need to leave because I have to go to a team meeting."
A sad note is that he has started to ask about his vision. He knows he can't see, but he doesn't ask why yet. He just says things like, "Mom why are you working in the dark down here?" or "Give me my glasses" or "give me a flashlight, I know I have one in my bag over there" or "turn on the lights." When he does this, the staff told my parents to be honest with him and tell him he can't see right now. When they say that he does not ask why. He has also been perseverating on his arm casts and is difficult to redirect when it comes to this topic. He continuously asks when they will be taken off and at times gets really angry that they are there.
He was medicated last night in order to help him sleep and he seems to be improving with better sleep. He has also started to eat small amounts again.
Tara
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