On Wednesday I got to see Fredi walk!!!
She had help and a walker but I haven't seen her truly vertical for over a year. It was hard for her but she is doing it every day and getting better every week. First they help her stand and she stand with her walker for a little while to get used to being upright. Then she will rest and the next time she gets up she walks for a while and she'll rest and do it again. It is really something. One thing that will have to be overcome though for her to be able to walk well is that right now she is having a very hard time getting her heels to the floor. Between the shape of her feet and the fact that her hamstrings and tendons are beyond tight doing that is very difficult.
I suppose that I always knew we would be here but last summer and fall I was just so scared that we would lose her that recovery seemed impossible. Her inability to speak really kicked her in the pants because she has always relied on communication when all else failed. As soon as she became able to speak again she really picked up.
Now she has days where she is actually busy with PT, speech therapy, OT, therapy therapy... At the end of the day when she has a chance to relax she takes advantage of it. Weekends are harder because she has no schedule but she gets through reading and watching TV.
A few days ago I came to the conclusion that I should put all the notes I have sent out since last March on a blog so that there would be a record and when someone has questions they would have a central source to refer to. I have done that and now all my notes can be browsed at daisybrain.blogspot.com. Take a look.
Keep the faith.
Tracy
Friday, April 25, 2008
Tuesday, April 22, 2008
April 12, 2008
Hello Everyone:
This has been a difficult but productive and positive week for Fredi.
She has been working hard in PT and is beginning to stand and walk but it is very painful and so she is on a steady but well monitored diet of percoset.
She talks all the time and is busy reading the times and New Yorker so if you visit you won't be without anything to talk about. Baseball season has begun, the election is in full swing, the Knicks are in the toilet, the Pope is coming to town, I borrowed the the last season of the Sopranos off Netflix for her, she also has cable now so she will be watching CNN and NY1.....
On Tuesday I took her to the Access-A-Ride office for an interview to assess her eligibility for this service. We don't anticipate a problem.
This was the farthest she has been from the nursing home in anything other than an ambulance since she got sick. Our meeting there was quick and our ride wasn't for another 90 minutes so we decided to try and take the bus. As we were walking up Madison Avenue to 125th Street I looked up and saw the school where Fredi's sister Sharon works. I think my words were, "Hey look. It's Auntie's school." Fredi was already in a daze, being able to be almost normal, out on the street so far from the home with an escort. I think she said, "What?" She was so excited when she realized where we were so.... we decided to surprise Auntie Nana and pay her a visit. We went into the building and sure enough Sharon was walking the halls, saw us and FREAKED OUT. And that is putting it mildly. My lord, what a ruckus. She jumped up and down and cried and almost dropped the lunch she was carrying. Anyway we ended up staying there until our ride back to Amsterdam House was scheduled. At that time we walked back to the Access-A-Ride office and went back to the nursing home in shock over how our morning ended up.
Fredi has also been eating food in the presence of her speech therapist who monitors her swallowing. So far she is still getting mounds of puree and thickened liquid but that may change soon. They are talking about reversing her tracheostomy and feeding tube so relief is in sight.
One other thing is that her friend Christina from Seattle will be coming to NY in May and we will be taking Fredi to the ballet. We are a go for that. She is weaning off her O2 as well so things are getting easier for travel. We may not need an O2 tank. I thought that one Monday I would take her to the movies if we can find something she wants to see close to Amsterdam House.
I guess that is it for now.
Tracy
This has been a difficult but productive and positive week for Fredi.
She has been working hard in PT and is beginning to stand and walk but it is very painful and so she is on a steady but well monitored diet of percoset.
She talks all the time and is busy reading the times and New Yorker so if you visit you won't be without anything to talk about. Baseball season has begun, the election is in full swing, the Knicks are in the toilet, the Pope is coming to town, I borrowed the the last season of the Sopranos off Netflix for her, she also has cable now so she will be watching CNN and NY1.....
On Tuesday I took her to the Access-A-Ride office for an interview to assess her eligibility for this service. We don't anticipate a problem.
This was the farthest she has been from the nursing home in anything other than an ambulance since she got sick. Our meeting there was quick and our ride wasn't for another 90 minutes so we decided to try and take the bus. As we were walking up Madison Avenue to 125th Street I looked up and saw the school where Fredi's sister Sharon works. I think my words were, "Hey look. It's Auntie's school." Fredi was already in a daze, being able to be almost normal, out on the street so far from the home with an escort. I think she said, "What?" She was so excited when she realized where we were so.... we decided to surprise Auntie Nana and pay her a visit. We went into the building and sure enough Sharon was walking the halls, saw us and FREAKED OUT. And that is putting it mildly. My lord, what a ruckus. She jumped up and down and cried and almost dropped the lunch she was carrying. Anyway we ended up staying there until our ride back to Amsterdam House was scheduled. At that time we walked back to the Access-A-Ride office and went back to the nursing home in shock over how our morning ended up.
Fredi has also been eating food in the presence of her speech therapist who monitors her swallowing. So far she is still getting mounds of puree and thickened liquid but that may change soon. They are talking about reversing her tracheostomy and feeding tube so relief is in sight.
One other thing is that her friend Christina from Seattle will be coming to NY in May and we will be taking Fredi to the ballet. We are a go for that. She is weaning off her O2 as well so things are getting easier for travel. We may not need an O2 tank. I thought that one Monday I would take her to the movies if we can find something she wants to see close to Amsterdam House.
I guess that is it for now.
Tracy
March 24, 2008
Hello Everyone:
I wanted you all to know that Fredi did go to church yesterday at the Cathedral Church of St. John the Divine without incident. She stayed for the whole service and remained afterwards to speak with Father Tom, a priest there who is also a friend of our next door neighbor Bob. Father Tom has been visiting Fredi regularly during her stay at Amsterdam House.
Going out was a little scary for her but she handled it well. All the people made her a little dizzy, it was cold, and her daughter drives the wheel chair like a kamikaze but she came through. August and Daniel came too and that made it a family affair. Pat was glad to see her out and the whole excursion was totally worth it.
On Friday she was able to take a few steps in physical therapy (4 to be exact) with a lot of assistance but that is getting better too.
One note for you all. If you go see her Fredi is on a strict therapeutic regimen at the nursing home. As she gets better she may ask you to bring her things she craves like Nathan's hot dogs. She is to have NOTHING by mouth at this time and when that changes her diet will still be closely monitored. She can have; books, flowers, DVD's, balloons...... You get the picture.
Tracy
I wanted you all to know that Fredi did go to church yesterday at the Cathedral Church of St. John the Divine without incident. She stayed for the whole service and remained afterwards to speak with Father Tom, a priest there who is also a friend of our next door neighbor Bob. Father Tom has been visiting Fredi regularly during her stay at Amsterdam House.
Going out was a little scary for her but she handled it well. All the people made her a little dizzy, it was cold, and her daughter drives the wheel chair like a kamikaze but she came through. August and Daniel came too and that made it a family affair. Pat was glad to see her out and the whole excursion was totally worth it.
On Friday she was able to take a few steps in physical therapy (4 to be exact) with a lot of assistance but that is getting better too.
One note for you all. If you go see her Fredi is on a strict therapeutic regimen at the nursing home. As she gets better she may ask you to bring her things she craves like Nathan's hot dogs. She is to have NOTHING by mouth at this time and when that changes her diet will still be closely monitored. She can have; books, flowers, DVD's, balloons...... You get the picture.
Tracy
March 17, 2008
Hello Everyone:
You didn't hear from me for the longest time because I really had nothing to report but things have changed so I am writing again.
I went with mom to an ENT appointment on Friday that really was really encouraging. The last appointments we went to were not so much but there have been some improvements with the health of her throat.
For months now really she has had this valve (I don't know the official name of it) that she can wear over her trach to help her speak. It allows air to enter through the trach for breaching but doesn't allow air to escape sending breath up past her vocal cords. It has since it constricts air flow it is something that she had to get used to wearing. She is now able to wear it most the time and the doctor told her to leave it on whether or not she is speaking. The goal is to tolerate it for 24 hours. I think it won't take time for her to be able to do this. She is highly motivated.
While we were at the doctor he changed her trach tube from a #6 to a #4. This tube is smaller and will allow for more air flow around it so she will be better able to breathe through her nose and mouth and rely less on the tube. Also since it is smaller the expectation is that she will be better able to force stuff out of her lungs through this tube making for less suctioning.
The doctor also said that she can start on clear liquids; water, apple juice, consomme. She is VERY excited about this. They are going to begin to try her on the liquids today. They couldn't start over the weekend because she needed to be evaluated by the speech therapists first and just in case something went wrong they wanted to make sure the medical staff was around. If she tolerates it well after a few days they can start her on soft foods; ice cream, yogurt, applesauce. This is all good news.
More about the valve that helps her to speak. Once she can tolerate it for 24 hours, and she is able to tolerate the food she is given, the doctor will install an actual cap to the trach that doesn't allow air to enter either way effectively closing off that opening. It that goes well they will be able to reverse the tracheostomy.
There are complications that exist of course. A big question is can she handle the food? If it makes her choke, seeps into her lungs and she needs to be suctioned then she will need a swallowing test to see what is going on with her swallowing mechanisms. I think this involves barium and imaging but I could be wrong about that. Let's hope that everything goes smoothly and it doesn't come to that.
Some short term goals are:
She wants to go to church on Easter. The good part is that she is right across the street from the Cathedral Church of St. John the Divine and she can wheel her there. If she needs to go back to her room for any reason she can be brought there.
She wants to go the ballet with Christina in May. We will need to see how her health progresses and see if she can be at Lincoln center for 3 hours without a nursing staff. I have to speak to the nursing home about that.
She wants to go to her 50th HS reunion in June.
Fredi calls me on the phone now too. She really missed communicating and her voice, while a little rough, is still her own. Thanks to all of you who contributed to her phone.
I'll let you all know what develops in the weeks ahead.
Peace
Tracy
You didn't hear from me for the longest time because I really had nothing to report but things have changed so I am writing again.
I went with mom to an ENT appointment on Friday that really was really encouraging. The last appointments we went to were not so much but there have been some improvements with the health of her throat.
For months now really she has had this valve (I don't know the official name of it) that she can wear over her trach to help her speak. It allows air to enter through the trach for breaching but doesn't allow air to escape sending breath up past her vocal cords. It has since it constricts air flow it is something that she had to get used to wearing. She is now able to wear it most the time and the doctor told her to leave it on whether or not she is speaking. The goal is to tolerate it for 24 hours. I think it won't take time for her to be able to do this. She is highly motivated.
While we were at the doctor he changed her trach tube from a #6 to a #4. This tube is smaller and will allow for more air flow around it so she will be better able to breathe through her nose and mouth and rely less on the tube. Also since it is smaller the expectation is that she will be better able to force stuff out of her lungs through this tube making for less suctioning.
The doctor also said that she can start on clear liquids; water, apple juice, consomme. She is VERY excited about this. They are going to begin to try her on the liquids today. They couldn't start over the weekend because she needed to be evaluated by the speech therapists first and just in case something went wrong they wanted to make sure the medical staff was around. If she tolerates it well after a few days they can start her on soft foods; ice cream, yogurt, applesauce. This is all good news.
More about the valve that helps her to speak. Once she can tolerate it for 24 hours, and she is able to tolerate the food she is given, the doctor will install an actual cap to the trach that doesn't allow air to enter either way effectively closing off that opening. It that goes well they will be able to reverse the tracheostomy.
There are complications that exist of course. A big question is can she handle the food? If it makes her choke, seeps into her lungs and she needs to be suctioned then she will need a swallowing test to see what is going on with her swallowing mechanisms. I think this involves barium and imaging but I could be wrong about that. Let's hope that everything goes smoothly and it doesn't come to that.
Some short term goals are:
She wants to go to church on Easter. The good part is that she is right across the street from the Cathedral Church of St. John the Divine and she can wheel her there. If she needs to go back to her room for any reason she can be brought there.
She wants to go the ballet with Christina in May. We will need to see how her health progresses and see if she can be at Lincoln center for 3 hours without a nursing staff. I have to speak to the nursing home about that.
She wants to go to her 50th HS reunion in June.
Fredi calls me on the phone now too. She really missed communicating and her voice, while a little rough, is still her own. Thanks to all of you who contributed to her phone.
I'll let you all know what develops in the weeks ahead.
Peace
Tracy
March 6, 2008
Hi everyone:
I wanted to let you know that I saw Fredi on Tuesday and she really seems to be doing much better, mentally anyway. Her attitude has really changed and hopefully this will lead to some physical improvement.
She was visited by an old friend from High School and that was apparently a cathartic visit. When I saw her the other day we had a good talk and she really wants to get out of there. She is talking more and this has also lifted her spirits. She actually called me on Tuesday morning so things are looking up. Let's hope that this momentum continues.
I want to thank you all for you positive thoughts.
For those of you who are enduring through your own personal crisis, my prayers are with you all.
If you sent me a message to bring to Fredi, she got it.
Keep the faith.
Tracy
I wanted to let you know that I saw Fredi on Tuesday and she really seems to be doing much better, mentally anyway. Her attitude has really changed and hopefully this will lead to some physical improvement.
She was visited by an old friend from High School and that was apparently a cathartic visit. When I saw her the other day we had a good talk and she really wants to get out of there. She is talking more and this has also lifted her spirits. She actually called me on Tuesday morning so things are looking up. Let's hope that this momentum continues.
I want to thank you all for you positive thoughts.
For those of you who are enduring through your own personal crisis, my prayers are with you all.
If you sent me a message to bring to Fredi, she got it.
Keep the faith.
Tracy
February 27, 2008
Hello everybody.
I know it has been a long time since you have heard from me. Some of you have contacted me for updates about Fredi and I haven't responded. I am just so tired and it is easier to respond to everyone at once.
Anyway, Fredi continues to recuperate at Amsterdam House Nursing Home. No one seems to know just how much improvement we can expect. Suffice to say that she still can't walk and is completely dependent on the care she receives there. At one point she was improving and getting stronger but she fell into a funk and she didn't want to do anything. It was so hard. She just laid there reading some but not trying to get any stronger. At this time she was discharged from physical and occupational therapy. In order to begin those treatments again she will have to be reevaluated. That hasn't happened yet but we are working on it. She has begun seeing a therapist there and with her help we will be able to get her mentally healthy enough to want to get stronger. I think that this doctor's input is helping.
She does continue to work hard in speech therapy and is using her voice more even though she has the tracheostomy. We still don't know when we will be able to get that reversed but the fact that she is using her voice more and exercising her larynx will help.
Fredi can and will accept visitors and if you want to send her a message feel free to send it to me and I will print it out and bring it to her. She does have access to e-mail and text messaging but doesn't respond very often so you don't know if she has seen your message or not. We're working on that too.
For all you record keepers out there. Fredi walked into St. Vincent's on February 21, 2007. She has been sick for a year now. Light a candle.
I am still trying to find:
David Eidenberg
Barbara Roach
If you have any other questions do e-mail me. I'l do my best to answer any individual concerns.
Tracy
I know it has been a long time since you have heard from me. Some of you have contacted me for updates about Fredi and I haven't responded. I am just so tired and it is easier to respond to everyone at once.
Anyway, Fredi continues to recuperate at Amsterdam House Nursing Home. No one seems to know just how much improvement we can expect. Suffice to say that she still can't walk and is completely dependent on the care she receives there. At one point she was improving and getting stronger but she fell into a funk and she didn't want to do anything. It was so hard. She just laid there reading some but not trying to get any stronger. At this time she was discharged from physical and occupational therapy. In order to begin those treatments again she will have to be reevaluated. That hasn't happened yet but we are working on it. She has begun seeing a therapist there and with her help we will be able to get her mentally healthy enough to want to get stronger. I think that this doctor's input is helping.
She does continue to work hard in speech therapy and is using her voice more even though she has the tracheostomy. We still don't know when we will be able to get that reversed but the fact that she is using her voice more and exercising her larynx will help.
Fredi can and will accept visitors and if you want to send her a message feel free to send it to me and I will print it out and bring it to her. She does have access to e-mail and text messaging but doesn't respond very often so you don't know if she has seen your message or not. We're working on that too.
For all you record keepers out there. Fredi walked into St. Vincent's on February 21, 2007. She has been sick for a year now. Light a candle.
I am still trying to find:
David Eidenberg
Barbara Roach
If you have any other questions do e-mail me. I'l do my best to answer any individual concerns.
Tracy
October 1, 2007
Hello again.
I went with Fredi to an ENT at New York Hospital last week and the news was not as good as we wanted but not terrible either.
As it turns out the trach cannot be removed right now and we finally got a good explanation of why she continues to have so many secretions. He looked down her throat and in her nose (as ENT's will do) and saw that while her vocal chords are working well and flexing and closing while swallowing her larynx remains swollen from years of severe reflux caused by that rotten hiatal hernia. If you are unlucky enough to get one of these, have it repaired. As a result, her vocal chords can't close completely so what she swallows does not go down her esophagus, rather it continues to slip down her trachea. Therefore all the secretions coming out of her lungs are not lung secretions at all but rather mouth secretions that have run down into her lungs. For now, as long as her mouth creates saliva she will have these secretions. Because she cannot swallow effectively she still needs the trachea. So what do we do? He prescribed additional reflux medicine. He believes that she still has some acid creeping up and irritating the larynx. He wants to see her again in 6-8 weeks.
At the hospital she was given the tracheostomy because she couldn't swallow/handle her own secretions. Apparently, she still can't.
The good part is that since she isn't on a ventilator the cuff can be deflated. She can talk now as long as the hole in her trach is covered up. He also asked that the nursing home get her a cap for the trach that basically allows her to breathe in through it but directs exhaled air over the vocal chords so she will be able to speak more readily. I should be going to visit her today. I'll let you all know how she is doing.
Tracy
I went with Fredi to an ENT at New York Hospital last week and the news was not as good as we wanted but not terrible either.
As it turns out the trach cannot be removed right now and we finally got a good explanation of why she continues to have so many secretions. He looked down her throat and in her nose (as ENT's will do) and saw that while her vocal chords are working well and flexing and closing while swallowing her larynx remains swollen from years of severe reflux caused by that rotten hiatal hernia. If you are unlucky enough to get one of these, have it repaired. As a result, her vocal chords can't close completely so what she swallows does not go down her esophagus, rather it continues to slip down her trachea. Therefore all the secretions coming out of her lungs are not lung secretions at all but rather mouth secretions that have run down into her lungs. For now, as long as her mouth creates saliva she will have these secretions. Because she cannot swallow effectively she still needs the trachea. So what do we do? He prescribed additional reflux medicine. He believes that she still has some acid creeping up and irritating the larynx. He wants to see her again in 6-8 weeks.
At the hospital she was given the tracheostomy because she couldn't swallow/handle her own secretions. Apparently, she still can't.
The good part is that since she isn't on a ventilator the cuff can be deflated. She can talk now as long as the hole in her trach is covered up. He also asked that the nursing home get her a cap for the trach that basically allows her to breathe in through it but directs exhaled air over the vocal chords so she will be able to speak more readily. I should be going to visit her today. I'll let you all know how she is doing.
Tracy
September 25, 2007
Hello Everyone:
It is time for me to update you all on Fredi's progress.
First I want to thank all of you who have gone to visit her and sent her books, DVD's and plants. These things are comforts in the transience of her life.
Last week I travelled with her to a new pulmonologist. His name is Dr. Saunders and he practices out of NY Hospital. We travelled by ambulance which had its challenges but we got there which we wouldn't have without the ambulance. Challenges aside it is quite a way to travel. It was interesting because people treat Fredi as you would expect. She was looking out the rear window of the "bus", getting her bearings and she wanted to know which Central Park transverse we were traveling across. When I asked for her the driver said, "We're almost there." I politely said that wasn't what she wanted to know. She wanted to know where we were. You learn that if you are on a gurney and can't move your legs they thing your mind is gone. We were on our way back to the nursing home and she wanted to know why we were on Broadway. I think it was good for her to see some of the city. One of the EMS guys thought that the Metropolitan Museum of Art was "the Science Museum". Fredi wanted to know how long he had been in NY. "6 months", was his response. We excused him for his gaffe and let him know that the name of "the Science Museum" is the American Museum of Natural History, that no that museum was not it and that he needs to learn some basics of NY residency.
Anyway, I gave this doctor all of Fredi's history and he thinks that the trach should come out. There are some things that need to be accomplished first but we are now heading in that direction. She has had a lot of secretions since the tracheostomy was installed and no therapies have helped to reduce them. This doctor thinks that the irritation from the trach may be the cause of the secretions. These secretions are clear and loose and she has had no fever or green or yellow sputum. The culture also shows that the sputum is not infected. He also took her off of the bronchial dialators. They weren't helping at all, and so, why take them.
Tomorrow, she will see an ENT to evaluate her swallowing and airways to see if removing the tube is viable. There really isn't any reason that it shouldn't be. After that they will begin to deflate the internal cuff so that air can flow over her vocal cords if the trach is blocked. From there they will change her to something called a fenestrated trach. This type of trach doesn't have an internal collar and allows greater air flow in the sinuses. If she tolerates this well, the tracheostomy will be reversed. Please keep her in your prayers as we move forward.
Fredi is reading again quite avidly which she wasn't even doing when she was at Village Nursing Home. Unfortunately she can't hold a book which is a problem. As a result I bring her books and tear them into sections so she can handle them.
Physically she is getting stronger. It is hard for people to understand why she still can't walk but if one saw her condition when she was released from the hospital they would understand. She couldn't lift her whole arm off of the bed, only what is below the elbow and that only a little. Now she can. She can also lift her leg. These are actions that most of us take for granted. I never will again. She says that her fingers are numb and that makes it hard for her to hold a pen or write. I was speaking to Adrienne over the weekend. We both thought that it would be helpful if I got her a blackberry. That way she can communicate with you all. I'll let you know if and when that is accomplished. The nursing staff have been wonderful helping her get her strength back and I have had the pleasure of being there during a few of her bedside therapy sessions. The therapists there are really wonderful. I want to thank Myra once again for getting my mother into such a terrific facility.
Something else that happened when we were at the pulmonologist was that I described for the doctor what was involved in the surgery to repair her hiatal hernia. She had never heard the gory details. She looked at me with the most astonished expression and said, "They did THAT to me? Yuck." It was a moment.
If you don't have the address of the nursing home, here it is again.
Amsterdam House
1060 Amsterdam Avenue
New York, NY 10025
I can't think of anything else to say right now but I am sure I will think of something in 5 minutes.
It is time for me to update you all on Fredi's progress.
First I want to thank all of you who have gone to visit her and sent her books, DVD's and plants. These things are comforts in the transience of her life.
Last week I travelled with her to a new pulmonologist. His name is Dr. Saunders and he practices out of NY Hospital. We travelled by ambulance which had its challenges but we got there which we wouldn't have without the ambulance. Challenges aside it is quite a way to travel. It was interesting because people treat Fredi as you would expect. She was looking out the rear window of the "bus", getting her bearings and she wanted to know which Central Park transverse we were traveling across. When I asked for her the driver said, "We're almost there." I politely said that wasn't what she wanted to know. She wanted to know where we were. You learn that if you are on a gurney and can't move your legs they thing your mind is gone. We were on our way back to the nursing home and she wanted to know why we were on Broadway. I think it was good for her to see some of the city. One of the EMS guys thought that the Metropolitan Museum of Art was "the Science Museum". Fredi wanted to know how long he had been in NY. "6 months", was his response. We excused him for his gaffe and let him know that the name of "the Science Museum" is the American Museum of Natural History, that no that museum was not it and that he needs to learn some basics of NY residency.
Anyway, I gave this doctor all of Fredi's history and he thinks that the trach should come out. There are some things that need to be accomplished first but we are now heading in that direction. She has had a lot of secretions since the tracheostomy was installed and no therapies have helped to reduce them. This doctor thinks that the irritation from the trach may be the cause of the secretions. These secretions are clear and loose and she has had no fever or green or yellow sputum. The culture also shows that the sputum is not infected. He also took her off of the bronchial dialators. They weren't helping at all, and so, why take them.
Tomorrow, she will see an ENT to evaluate her swallowing and airways to see if removing the tube is viable. There really isn't any reason that it shouldn't be. After that they will begin to deflate the internal cuff so that air can flow over her vocal cords if the trach is blocked. From there they will change her to something called a fenestrated trach. This type of trach doesn't have an internal collar and allows greater air flow in the sinuses. If she tolerates this well, the tracheostomy will be reversed. Please keep her in your prayers as we move forward.
Fredi is reading again quite avidly which she wasn't even doing when she was at Village Nursing Home. Unfortunately she can't hold a book which is a problem. As a result I bring her books and tear them into sections so she can handle them.
Physically she is getting stronger. It is hard for people to understand why she still can't walk but if one saw her condition when she was released from the hospital they would understand. She couldn't lift her whole arm off of the bed, only what is below the elbow and that only a little. Now she can. She can also lift her leg. These are actions that most of us take for granted. I never will again. She says that her fingers are numb and that makes it hard for her to hold a pen or write. I was speaking to Adrienne over the weekend. We both thought that it would be helpful if I got her a blackberry. That way she can communicate with you all. I'll let you know if and when that is accomplished. The nursing staff have been wonderful helping her get her strength back and I have had the pleasure of being there during a few of her bedside therapy sessions. The therapists there are really wonderful. I want to thank Myra once again for getting my mother into such a terrific facility.
Something else that happened when we were at the pulmonologist was that I described for the doctor what was involved in the surgery to repair her hiatal hernia. She had never heard the gory details. She looked at me with the most astonished expression and said, "They did THAT to me? Yuck." It was a moment.
If you don't have the address of the nursing home, here it is again.
Amsterdam House
1060 Amsterdam Avenue
New York, NY 10025
I can't think of anything else to say right now but I am sure I will think of something in 5 minutes.
August 17, 2007
I'm sorry I haven't been in touch but things have been crazy. I just want to give you all a quick update.
Fredi is settling nicely into Amsterdam house and the therapists there seem excellent. She is getting her strength back and actually sat up on her own for 5 minutes on Monday. I saw it with my own eyes. She couldn't get to a seated position on her own but once there she maintained for 5 minutes. 5 minutes might not seem like a long time to you and me but for her right now it is huge.
I know that some of you have gone to see her and she was sleeping. She works really hard in the morning in therapy so she gets tired in the afternoon. Some things to keep in mind.
Thanks to all of you for all of your words and deeds of encouragement. We are in month 6 of this trial.
Tracy
Fredi is settling nicely into Amsterdam house and the therapists there seem excellent. She is getting her strength back and actually sat up on her own for 5 minutes on Monday. I saw it with my own eyes. She couldn't get to a seated position on her own but once there she maintained for 5 minutes. 5 minutes might not seem like a long time to you and me but for her right now it is huge.
I know that some of you have gone to see her and she was sleeping. She works really hard in the morning in therapy so she gets tired in the afternoon. Some things to keep in mind.
- She can be taken outside if you get there and she is in her chair. They just need to put some O2 on the chair. There is a small garden out front facing St. John's. She likes it there.
- She is not on a ventilator. If you go there the machine she has is for O2 only. She is breathing on her own.
- She still does have a lot of pulmonary secretions. They are trying to reduce them but that seems to be hard to do.
- There still is no plan for trying to remove the tracheostomy and this I find frustrating. There are a lot of steps to getting this done and they are being held up by the pulmonologists. I'm sure that the fact that it is August has something to do with it.
- I got Fredi a subscription to the New Yorker so don't bring that to her. She will only end up with multiple copies. Paperback legal thrillers should do her well especially since she can tear them up and read them in sections.
- She has a small DVD player so if you want to bring her copies of Monk or House she would like that. I got her seasons 3 and 4 of the Sopranos.
Thanks to all of you for all of your words and deeds of encouragement. We are in month 6 of this trial.
Tracy
July 18, 2007
I am running like mad but wanted to let everyone know that Fredi was moved to Amsterdam house on Monday. She isn't happy. It is better than the hospital but the responsiveness isn't what it is in the hospital. She has some skin breakdown on her sacrum and that is making her uncomfortable and cranky. More cranky than usual anyway.
Some of you sent responses to me the other day and I have to apologize because I deleted all the messages that went into spam by mistake. I meant to hit the "move to in box" button but hit delete instead. Please resend your notes.
Thanks. Gotta run.
Tracy
Some of you sent responses to me the other day and I have to apologize because I deleted all the messages that went into spam by mistake. I meant to hit the "move to in box" button but hit delete instead. Please resend your notes.
Thanks. Gotta run.
Tracy
July 16, 2007
Hello everyone and I'm sorry I have been out of touch for so long. I can't sleep so I thought I would write to you all instead.
Since my last note Fredi had another setback infection and they had to reinflate her collar so... no more talking. At least for now. She responded to the antibiotics well this time and her fever was short lived but they aren't ready to deflate her collar at this point. Otherwise her condition is about the same. She still has the tracheostomy and feeding tube and so far she doesn't get better or worse. She does have good days and bad ones where she is less and more with it but basically she is stable. I do know she is bored. This can't be helping her situation.
One piece of good news is that they have decided to release her into a rehab facility. I'm glad about this because the risk of infection is less and maybe the change of environment will boost her spirits and start her on the road to recovery. Thanks to Myra she should have a bed at Amsterdam House Nursing Home tomorrow. Maybe she will be less bored there and I will be able to get to know her regular therapists. Hopefully she will get more therapy and this will give her something to do.
Amsterdam House is located at 112 and Amsterdam Avenue across the street from the Cathedral Church of St. John the Divine. It is less convenient for me but I feel confident about her care.
Pat - Maybe we could see if a deacon from the cathedral can visit her.
Thanks to you all.
Tracy
Since my last note Fredi had another setback infection and they had to reinflate her collar so... no more talking. At least for now. She responded to the antibiotics well this time and her fever was short lived but they aren't ready to deflate her collar at this point. Otherwise her condition is about the same. She still has the tracheostomy and feeding tube and so far she doesn't get better or worse. She does have good days and bad ones where she is less and more with it but basically she is stable. I do know she is bored. This can't be helping her situation.
One piece of good news is that they have decided to release her into a rehab facility. I'm glad about this because the risk of infection is less and maybe the change of environment will boost her spirits and start her on the road to recovery. Thanks to Myra she should have a bed at Amsterdam House Nursing Home tomorrow. Maybe she will be less bored there and I will be able to get to know her regular therapists. Hopefully she will get more therapy and this will give her something to do.
Amsterdam House is located at 112 and Amsterdam Avenue across the street from the Cathedral Church of St. John the Divine. It is less convenient for me but I feel confident about her care.
Pat - Maybe we could see if a deacon from the cathedral can visit her.
Thanks to you all.
Tracy
June 23, 2007
Hi everybody.
I went to visit Fredi yesterday and have the following to report.
They have removed the respirator from her room. This is a good sign. She has been off the respirator for another 4 days now. She was on it intermittently for a period while they assessed a possible infection/mucus plug.
She isn't on any antibiotics right now.
Yesterday her temperature was 97.6.
Her sputum is clear/white. This is also good news. They took her off the coumadin again. She just couldn't clot so the lung irritation from suctioning kept bleeding.
She is uncomfortable. This is also good news.
I have gotten her to practice moving her legs and squeezing things to work her limbs.
I think she is on an upswing.
Keep you toes crossed.
Also yesterday I took August to see her for the first time since the beginning of April. She told me not to but I didn't listen. He needed to see that Misha was more than a myth and she needed to remember one good reason to recover. In two months he has grown, learned things, changed in little ways. I wanted her to see this. He found the experience a little scary but handled it well. He keeps asking why she can't talk. I try to explain it as best I can but how much is he supposed to understand about biology and the passing of air over the vocal cords. I think I broke it down pretty well. I will continue to answer his questions with as much candor as I can muster.
You all will hear from me again soon.
Tracy
I went to visit Fredi yesterday and have the following to report.
They have removed the respirator from her room. This is a good sign. She has been off the respirator for another 4 days now. She was on it intermittently for a period while they assessed a possible infection/mucus plug.
She isn't on any antibiotics right now.
Yesterday her temperature was 97.6.
Her sputum is clear/white. This is also good news. They took her off the coumadin again. She just couldn't clot so the lung irritation from suctioning kept bleeding.
She is uncomfortable. This is also good news.
I have gotten her to practice moving her legs and squeezing things to work her limbs.
I think she is on an upswing.
Keep you toes crossed.
Also yesterday I took August to see her for the first time since the beginning of April. She told me not to but I didn't listen. He needed to see that Misha was more than a myth and she needed to remember one good reason to recover. In two months he has grown, learned things, changed in little ways. I wanted her to see this. He found the experience a little scary but handled it well. He keeps asking why she can't talk. I try to explain it as best I can but how much is he supposed to understand about biology and the passing of air over the vocal cords. I think I broke it down pretty well. I will continue to answer his questions with as much candor as I can muster.
You all will hear from me again soon.
Tracy
June 19, 2007
Hi everyone. I was trying to think of some more creative titles to put in the subject line then decided that it was too exhausting so I stick to the status quo.
Yesterday when I went to see Fredi I was initially alarmed by the fact that there was blood in her sputum. They seem to think that it was simply due to irritation from suctioning which they are trying to do less. Also they are now using a more flexible tube that should be less irritating. When I got there the sputum was pinkish. Well... very pinkish. Apparently earlier it was really red which had everyone a little scared. They do have her on some support now (6 hours off and 1 hour on the respirator). I'm not sure she needs the respirator now though. It really seems to be a precaution. Also she had some low grade fevers the last few days. The infectious disease doc was by when I was there and they are trying to determine whether or not she would benefit from any additional antibiotics. We were all in agreement though that we DO NOT want to give her any more antibiotics unless absolutely necessary. They were going to review new pathology yesterday and this morning and make their determination. Hopefully they will be able to wait to see if the fevers clear on their own.
Also yesterday while she was on the respirator they left the collar a little loose and I was actually able to hear her speak. It was just a little and softly but words they were just the same. While I am getting better at reading her lips it can get exhausting for both of us.
Something else. She seemed stronger yesterday. The nurse and I asked her if she was feeling stronger. She said no but I could see a difference in the way she used her hands and tried to do some things for herself, even if it was just putting on her glasses. Trust me, even seemingly simple tasks like that have been close to impossible for her.
I am still trying to get her to acquiesce on the visitors but she won't budge.
I want to thank all of you who have offered and helped me during the last 5 months. It has been incredibly difficult and the health issues are just the tip of the iceberg.... really.
I'll be in touch.
Tracy
Yesterday when I went to see Fredi I was initially alarmed by the fact that there was blood in her sputum. They seem to think that it was simply due to irritation from suctioning which they are trying to do less. Also they are now using a more flexible tube that should be less irritating. When I got there the sputum was pinkish. Well... very pinkish. Apparently earlier it was really red which had everyone a little scared. They do have her on some support now (6 hours off and 1 hour on the respirator). I'm not sure she needs the respirator now though. It really seems to be a precaution. Also she had some low grade fevers the last few days. The infectious disease doc was by when I was there and they are trying to determine whether or not she would benefit from any additional antibiotics. We were all in agreement though that we DO NOT want to give her any more antibiotics unless absolutely necessary. They were going to review new pathology yesterday and this morning and make their determination. Hopefully they will be able to wait to see if the fevers clear on their own.
Also yesterday while she was on the respirator they left the collar a little loose and I was actually able to hear her speak. It was just a little and softly but words they were just the same. While I am getting better at reading her lips it can get exhausting for both of us.
Something else. She seemed stronger yesterday. The nurse and I asked her if she was feeling stronger. She said no but I could see a difference in the way she used her hands and tried to do some things for herself, even if it was just putting on her glasses. Trust me, even seemingly simple tasks like that have been close to impossible for her.
I am still trying to get her to acquiesce on the visitors but she won't budge.
I want to thank all of you who have offered and helped me during the last 5 months. It has been incredibly difficult and the health issues are just the tip of the iceberg.... really.
I'll be in touch.
Tracy
June 12, 2007
Well. Things may be looking up again.
Mom has been off the ventilator now for 48 hours. While this is positive news it also makes me nervous. When you get used to the respiratory support the prospect of what can happen without it is scary. The last time she was breathing on her own she made it for 24 hours then crashed with the infection and fevers. This time she is handling her secretions well and seems able to cough up everything on her own. On Monday her nurse, Robert, said the few times he had to suction her very little came up. Yesterday when I was there she was coughing significantly less and her sputum cup was almost empty. On other days is was quite full.
She likes Robert a lot. He seems to be her favorite nurse. She even sticks her tongue out at him when she doesn't like something. She doesn't do that to just anybody.
She was visited by her Physical Therapist from the nursing home, Barbara. She seemed to enjoy that. They miss her over there.
What comes next? They will begin to dislodge the collar/balloon blocking her trachea. When they do this they will see if she can handle her secretions and not aspirate fluid into her lungs. This is a big deal because it will determine whether or not they will be able to safely reverse the tracheostomy.
That's all for now.
Mom has been off the ventilator now for 48 hours. While this is positive news it also makes me nervous. When you get used to the respiratory support the prospect of what can happen without it is scary. The last time she was breathing on her own she made it for 24 hours then crashed with the infection and fevers. This time she is handling her secretions well and seems able to cough up everything on her own. On Monday her nurse, Robert, said the few times he had to suction her very little came up. Yesterday when I was there she was coughing significantly less and her sputum cup was almost empty. On other days is was quite full.
She likes Robert a lot. He seems to be her favorite nurse. She even sticks her tongue out at him when she doesn't like something. She doesn't do that to just anybody.
She was visited by her Physical Therapist from the nursing home, Barbara. She seemed to enjoy that. They miss her over there.
What comes next? They will begin to dislodge the collar/balloon blocking her trachea. When they do this they will see if she can handle her secretions and not aspirate fluid into her lungs. This is a big deal because it will determine whether or not they will be able to safely reverse the tracheostomy.
That's all for now.
June 11, 2007
Hi Everyone:
Tracy here with more news about Fredi.
When last we heard of her progress (or lack thereof) she was recovering from surgery to repair her hiatal hernia, had been off the ventilator and breathing on her own and then suffered a setback, was suffering from fevers was back on antibiotics and the ventilator, was moved back to ICU so they could isolate her infection.... yada, yada, yada. She wasn't responding to the antibiotics and so they did a nuclear med study where they remove some of her blood, treat it with it with isotopes to tag the white blood cells, reintroduce the blood to her body and give her a CT scan to see where those little white cells go. That's where the infection is. So... by the time they did this she was finally responding to the antibiotics and it turns out that it was just another rather vehement pneumonia.
Now...
She is back on the 14th floor at St. Vinnie's being weaned from the ventilator once again. She has been fever free for a week and the biggest concern is keeping her infection free. Going to see her requires gown and gloves and she is kept cleaner than she would like. She is always complaining that they want to give her a bath. She has been watching TV but is frustrated by the fact that she couldn't partake of the Sopranos because the hospital TV doesn't have HBO. She gets OT and PT almost every day and I will be bringing her something to squeeze so she can work on her hand strength.
I have been trying to convince her to allow more visitors. She still refuses.
I have had a few of you ask about her tracheostomy and when she will be able to talk again. She asks the same questions. From what I know these are the steps:
Slowly reduce the support she receives from the respirator until she is breathing on her own all or most of the time
Begin reducing the size of the balloon blocking access to her trachea to see if she aspirates when she swallows. This will be key to knowing if the tracheostomy will be able to be reversed. The whole picture is not just about the free flow of air but also the free and appropriate assimilation of swallowed matter including her own secretions.
Assuming all goes well, it will take weeks but the goal is to get her breathing on her own and swallowing efficiently. Keep your fingers crossed or whatever else works for you.
I am attaching August's School photo for any of you who care. He is getting big.
Tracy
June 1, 2007
Hello Everybody:
I want to thank you all for your patience in waiting for continuing updates on Mom's condition. I would write more often but time and the fact that I really don't have much to report keep me from just sharing boring or bad news.
I think at last communication I told you all that she was recovering nicely. Well, of course that changed. She had been off the ventilator for 24 hours and things were looking good. They were talking about scheduling her release but then she crashed, got an infection and a fever and went back on the ventilator. In looking for reasons for her not to have continued off the respirator the doctors said that they think they just expected too much too soon and in her weakened state they just took it too quickly. Then the infections set in and they haven't tried her breathing on her own since then until.... yesterday when when they cut back on the support the respirator is providing. Let's hope she continues to get stronger. The condition of her nerves is also still a factor. We need to pray that her neurological system has the strength to support her vital functions. Please join me in this regardless of your faith or lack thereof.
When I saw her yesterday she was better than I had seen her for a while and was enjoying a few episodes of Judging Amy.
The current complications have to do with the fact that she has an infection that they can't isolate. The antibiotics don't seem to be working and they can't find the source. So what happens is that she gets better then spikes another fever. To try and isolate it they are doing a nuclear study where they remove some of her blood (that was done yesterday) and put markers on the white blood cells. Then they re-inject the blood into her and see where those marked cells go via CT. They will be doing this today. We'll see what it shows us. They are doing the study because even though she was much improved yesterday they still want to see what is going on.
Just so you know she was moved back into ICU on Sunday just to better isolate her since they didn't know what she had and they wanted to better monitor her. I don't think she will be there more than another few days.
I'll try to keep you all more informed over time.
Tracy
I want to thank you all for your patience in waiting for continuing updates on Mom's condition. I would write more often but time and the fact that I really don't have much to report keep me from just sharing boring or bad news.
I think at last communication I told you all that she was recovering nicely. Well, of course that changed. She had been off the ventilator for 24 hours and things were looking good. They were talking about scheduling her release but then she crashed, got an infection and a fever and went back on the ventilator. In looking for reasons for her not to have continued off the respirator the doctors said that they think they just expected too much too soon and in her weakened state they just took it too quickly. Then the infections set in and they haven't tried her breathing on her own since then until.... yesterday when when they cut back on the support the respirator is providing. Let's hope she continues to get stronger. The condition of her nerves is also still a factor. We need to pray that her neurological system has the strength to support her vital functions. Please join me in this regardless of your faith or lack thereof.
When I saw her yesterday she was better than I had seen her for a while and was enjoying a few episodes of Judging Amy.
The current complications have to do with the fact that she has an infection that they can't isolate. The antibiotics don't seem to be working and they can't find the source. So what happens is that she gets better then spikes another fever. To try and isolate it they are doing a nuclear study where they remove some of her blood (that was done yesterday) and put markers on the white blood cells. Then they re-inject the blood into her and see where those marked cells go via CT. They will be doing this today. We'll see what it shows us. They are doing the study because even though she was much improved yesterday they still want to see what is going on.
Just so you know she was moved back into ICU on Sunday just to better isolate her since they didn't know what she had and they wanted to better monitor her. I don't think she will be there more than another few days.
I'll try to keep you all more informed over time.
Tracy
May 11, 2007
Hello to everyone.
First I want to thank you all for you well wishes, cards and notes. I have brought them all to her and will continue to do so.
And now for an update on her health.
She was moved to a "vent" floor on Wednesday. For those of you who don't know what that is (as I didn't) it is a floor at the hospital where they do almost nothing but wean patients off of ventilators. She has been on a respirator for so long now that her lungs need to recondition. She is much more comfortable and out of the ICU. She also seems relieved that the worst seems to be over. They have removed the chest tube from the incisions where they repaired the hernia and all of her feeding is happening through the GI tube. Additionally, she is off of all the antibiotics and isn't battling any infections. This is a blessing since two weeks ago they were still trying to get the combination right to battle her pneumonia. She is alert and actually wanted to watch TV yesterday. Yesterday they wanted to try her for a little while breathing without respirator assistance. The goal was 30 minutes. She went for an hour. The swallowing is something they will be watching more closely. She also began bedside PT and OT. She is EXTREMELY weak. For those of you who saw her at Village Nursing Home you know what it was like there as she tried to regain use of her limbs. It is really worse now. Her recovery will be long and painful. She is thinking about when she will want to see people again and that should be soon. Thank you all for your patience as she declined and is rebounding.
Hopefully I will only have good news to share going forward.
Tracy
First I want to thank you all for you well wishes, cards and notes. I have brought them all to her and will continue to do so.
And now for an update on her health.
She was moved to a "vent" floor on Wednesday. For those of you who don't know what that is (as I didn't) it is a floor at the hospital where they do almost nothing but wean patients off of ventilators. She has been on a respirator for so long now that her lungs need to recondition. She is much more comfortable and out of the ICU. She also seems relieved that the worst seems to be over. They have removed the chest tube from the incisions where they repaired the hernia and all of her feeding is happening through the GI tube. Additionally, she is off of all the antibiotics and isn't battling any infections. This is a blessing since two weeks ago they were still trying to get the combination right to battle her pneumonia. She is alert and actually wanted to watch TV yesterday. Yesterday they wanted to try her for a little while breathing without respirator assistance. The goal was 30 minutes. She went for an hour. The swallowing is something they will be watching more closely. She also began bedside PT and OT. She is EXTREMELY weak. For those of you who saw her at Village Nursing Home you know what it was like there as she tried to regain use of her limbs. It is really worse now. Her recovery will be long and painful. She is thinking about when she will want to see people again and that should be soon. Thank you all for your patience as she declined and is rebounding.
Hopefully I will only have good news to share going forward.
Tracy
May 8, 2007
Hello to all of you:
I went to see Fredi this morning and she is looking so much better. Sure she has a tracheotomy and a GI tube but she is lucid and mouthing words. She smiled and I made her laugh. I talked about the Mets and the Yankees and she was glad for the company. They are moving her today to a vent floor (14) at the hospital where they will try to wean her off the ventilator. So far so good.
Tracy
I went to see Fredi this morning and she is looking so much better. Sure she has a tracheotomy and a GI tube but she is lucid and mouthing words. She smiled and I made her laugh. I talked about the Mets and the Yankees and she was glad for the company. They are moving her today to a vent floor (14) at the hospital where they will try to wean her off the ventilator. So far so good.
Tracy
May 5, 2007
Sorry to have been out of touch with all of you for so long but a lot has happened and I just haven't had the time or the energy to string words together.
I think that at last communication Fredi was about to have the filter placed in her artery to prevent other clots from lodging in her vital organs. This was done on Monday, April 23. It was a long wait for the doctor to complete the procedure but it was done. On the same day, she became disoriented, her oxygen saturation went down and her respiration rate climbed. Her body was filling with fluid from all the IV's. Fluid that they said she needed. Her output however, just wasn't keeping up. They started her on diuretics and intubated her again. She stayed intubated for a week. They removed the tube on Monday, April 30. She was awake and alert for a time but her lungs were filling with fluid again as her swallowing mechanism had been compromised. She became unable to manage her own secretions. She was intubated again. She will stay this way for a prolonged period until she can gain the strength to swallow appropriately or else she will drown in her own secretions. So that she isn't living with a tube down her throat, which will not help her with the swallowing they have given her a tracheotomy. We will not be able to hear her voice for a while as she gains the strength or manage her secretions. You cannot speak with a trachea tube in. She also has had a GI tube installed for feeding. Getting good nutrition will be key for her regaining her strength. You can eat with a trachea tube, but not initially. They have also repaired her hiatal hernia. Her stomach as been protruding through a hole in her diaphragm for years. I don't even know how long. Like 10 or 15 years, maybe longer. Anyway it had become unmanageable and the condition was impacting her continued aspiration and breathing function as it was pressing on the lungs. Please know that her prognosis is still good (believe or not). She is scared, very scared and unable to speak so it is hard to know what is going on inside her head. She doesn't even have the strength to point to letters but I am going to bring her some scrabble pieces so she can spell for us. She has photos of August to look at and I keep telling her that fight and Fredi start with the same letter. My aunt prays with her and I just hold her hand, talk to her and knit. Seeing her is a trip. She is pretty much unrecognizable and I am pretty sure that she is PISSED off at me for giving permission for all these procedures but the alternative was not something I could live with.
I'm sure that you are all wondering how things got so bad. Believe me, I think about nothing but. What I have told you is all I know with the exception of a few details that we have decided to keep private. What the surgeon told me was that all of these medical conditions would have caught up with her over time but in her weakened state they got her all at once. A lot of the complications were due to her decreased lung function brought on by the embolism and subsequent pneumonia. I still don't think she is ready for visitors and I will ask her as the days go by when she is ready.
Just keep praying and keep her in your thoughts. I have been impressed with most of her doctors and the critical care nursing staff as St. Vinnie's are amazing.
When I did speak to her last she said that she wants to come back and misses everyone. She is so sad. I'm hoping she will be able to begin bedside PT in a few days.
Some of you have sent me notes that you want me to read her. I have done so and will keep doing so. Keep those notes coming.
One more thing.
Fredi doesn't have Diabetes, Cancer or Heart Disease. Those are some things we need to remember as she fights this thing.
Tracy
Tracy Balzano
daisybrain@earthlink.net
Love to you all.
Tracy
I think that at last communication Fredi was about to have the filter placed in her artery to prevent other clots from lodging in her vital organs. This was done on Monday, April 23. It was a long wait for the doctor to complete the procedure but it was done. On the same day, she became disoriented, her oxygen saturation went down and her respiration rate climbed. Her body was filling with fluid from all the IV's. Fluid that they said she needed. Her output however, just wasn't keeping up. They started her on diuretics and intubated her again. She stayed intubated for a week. They removed the tube on Monday, April 30. She was awake and alert for a time but her lungs were filling with fluid again as her swallowing mechanism had been compromised. She became unable to manage her own secretions. She was intubated again. She will stay this way for a prolonged period until she can gain the strength to swallow appropriately or else she will drown in her own secretions. So that she isn't living with a tube down her throat, which will not help her with the swallowing they have given her a tracheotomy. We will not be able to hear her voice for a while as she gains the strength or manage her secretions. You cannot speak with a trachea tube in. She also has had a GI tube installed for feeding. Getting good nutrition will be key for her regaining her strength. You can eat with a trachea tube, but not initially. They have also repaired her hiatal hernia. Her stomach as been protruding through a hole in her diaphragm for years. I don't even know how long. Like 10 or 15 years, maybe longer. Anyway it had become unmanageable and the condition was impacting her continued aspiration and breathing function as it was pressing on the lungs. Please know that her prognosis is still good (believe or not). She is scared, very scared and unable to speak so it is hard to know what is going on inside her head. She doesn't even have the strength to point to letters but I am going to bring her some scrabble pieces so she can spell for us. She has photos of August to look at and I keep telling her that fight and Fredi start with the same letter. My aunt prays with her and I just hold her hand, talk to her and knit. Seeing her is a trip. She is pretty much unrecognizable and I am pretty sure that she is PISSED off at me for giving permission for all these procedures but the alternative was not something I could live with.
I'm sure that you are all wondering how things got so bad. Believe me, I think about nothing but. What I have told you is all I know with the exception of a few details that we have decided to keep private. What the surgeon told me was that all of these medical conditions would have caught up with her over time but in her weakened state they got her all at once. A lot of the complications were due to her decreased lung function brought on by the embolism and subsequent pneumonia. I still don't think she is ready for visitors and I will ask her as the days go by when she is ready.
Just keep praying and keep her in your thoughts. I have been impressed with most of her doctors and the critical care nursing staff as St. Vinnie's are amazing.
When I did speak to her last she said that she wants to come back and misses everyone. She is so sad. I'm hoping she will be able to begin bedside PT in a few days.
Some of you have sent me notes that you want me to read her. I have done so and will keep doing so. Keep those notes coming.
One more thing.
Fredi doesn't have Diabetes, Cancer or Heart Disease. Those are some things we need to remember as she fights this thing.
Tracy
Tracy Balzano
daisybrain@earthlink.net
Love to you all.
Tracy
April 23, 2007
Hello everyone:
Please share this note with anyone not on the list and if you want me to add anyone to the distribution let me know.
It's Monday morning and I finally have a few minutes to update you as to Fredi's progress over the last few days. It has been a roller coaster.
As previously reported she was admitted to the hospital on Sunday, April 15 with a bowel obstruction that they were clearing and they were expecting to release her on Tuesday, April 17. She also had a UTI at that time and they were treating it with antibiotics. On Monday the 16th she suffered a pulmonary embolism that was promptly treated and brought under control by the hospital staff. The fact that she was already at the hospital may have saved her life.
Now for the update.
While they were getting her stable after the embolism she developed pneumonia which was aggravated by an episode where she aspirated a lot of stomach contents into her lungs. This required that she be intubated again while they suctioned the fluid out of her lungs. She really hated the intubation. I told her that she was better off than John Corzine. She agreed. She is a high risk for aspiration because of a hiatal hernia she has suffered from for a LONG time. As a result she cannot have anything by mouth, she has a tube that goes to her stomach to remove all contents and they will be scheduling her for surgery to correct her hernia. I look at this as a plus because it could and probably should have been treated a long time ago. She hasn't quite come to grips with the fact that on top of everything she will need surgery too.
As for the thrombosis and her ongoing risk of developing clots the treatment for this has changed, for the better I believe. I told her the other day that it is a good thing she got sick in 2007 and 1957 because if it were 1957 she would be fucked. She agreed. So... she isn't a great candidate for coumedin therapy because of her being at high risk for falls as she recovers and regains her strength. They don't want her to bleed out and neither do I. As an alternative they have this cool little filter that is inserted into the femoral artery and travels into the arterial feed to her lungs. There, it opens like a little umbrella and will trap any clots that move northward keeping them from moving into life threatening areas while they dissipate. When she is stronger she can begin coumedin therapy as another preventive measure but they don't think it will be necessary. The filter is being inserted some time this morning. This is great because she will still be able to enjoy arugula and spinach, won't need to be scared of falling (at least any more so than she already is), and won't need the administration of clotting agents if she needs any additional surgery in the future. Clotting agents are made from donated blood and would need to be administered any time there were a likely risk of bleeding. Blood products are expensive and using them does come with risks. Among them allergic reactions and the possibility of contracting HIV. These risks are small but there.
So what is she battling now?
Pneumonia - this is being treated and she is slowly recovering.
Embolism - The embolism is stabilized and we will just wait for the clot(s) to dissolve. I say clots because the one is being forced into a fork in the road and is splitting. The other clot in her leg will be trapped in the filter should it decide to migrate.
Hiatal Hernia - Will be corrected surgically next week.
UTI - She is finishing the course of antibiotics prescribed but is still on them for the pneumonia anyway. There is an additional bacteria in her urine now that is resistant to antibiotics. For her they say that it will clear up on its own but when you go visit her you must wear gown and gloves so you don't take it home, get sick and share the bug with your family.
Bowel Obstruction - Cleared
She still has asked that people refrain from visiting her.
Also since she is in ICU she cannot have any flowers. Don't send any. They won't reach her.
Tracy
Please share this note with anyone not on the list and if you want me to add anyone to the distribution let me know.
It's Monday morning and I finally have a few minutes to update you as to Fredi's progress over the last few days. It has been a roller coaster.
As previously reported she was admitted to the hospital on Sunday, April 15 with a bowel obstruction that they were clearing and they were expecting to release her on Tuesday, April 17. She also had a UTI at that time and they were treating it with antibiotics. On Monday the 16th she suffered a pulmonary embolism that was promptly treated and brought under control by the hospital staff. The fact that she was already at the hospital may have saved her life.
Now for the update.
While they were getting her stable after the embolism she developed pneumonia which was aggravated by an episode where she aspirated a lot of stomach contents into her lungs. This required that she be intubated again while they suctioned the fluid out of her lungs. She really hated the intubation. I told her that she was better off than John Corzine. She agreed. She is a high risk for aspiration because of a hiatal hernia she has suffered from for a LONG time. As a result she cannot have anything by mouth, she has a tube that goes to her stomach to remove all contents and they will be scheduling her for surgery to correct her hernia. I look at this as a plus because it could and probably should have been treated a long time ago. She hasn't quite come to grips with the fact that on top of everything she will need surgery too.
As for the thrombosis and her ongoing risk of developing clots the treatment for this has changed, for the better I believe. I told her the other day that it is a good thing she got sick in 2007 and 1957 because if it were 1957 she would be fucked. She agreed. So... she isn't a great candidate for coumedin therapy because of her being at high risk for falls as she recovers and regains her strength. They don't want her to bleed out and neither do I. As an alternative they have this cool little filter that is inserted into the femoral artery and travels into the arterial feed to her lungs. There, it opens like a little umbrella and will trap any clots that move northward keeping them from moving into life threatening areas while they dissipate. When she is stronger she can begin coumedin therapy as another preventive measure but they don't think it will be necessary. The filter is being inserted some time this morning. This is great because she will still be able to enjoy arugula and spinach, won't need to be scared of falling (at least any more so than she already is), and won't need the administration of clotting agents if she needs any additional surgery in the future. Clotting agents are made from donated blood and would need to be administered any time there were a likely risk of bleeding. Blood products are expensive and using them does come with risks. Among them allergic reactions and the possibility of contracting HIV. These risks are small but there.
So what is she battling now?
Pneumonia - this is being treated and she is slowly recovering.
Embolism - The embolism is stabilized and we will just wait for the clot(s) to dissolve. I say clots because the one is being forced into a fork in the road and is splitting. The other clot in her leg will be trapped in the filter should it decide to migrate.
Hiatal Hernia - Will be corrected surgically next week.
UTI - She is finishing the course of antibiotics prescribed but is still on them for the pneumonia anyway. There is an additional bacteria in her urine now that is resistant to antibiotics. For her they say that it will clear up on its own but when you go visit her you must wear gown and gloves so you don't take it home, get sick and share the bug with your family.
Bowel Obstruction - Cleared
She still has asked that people refrain from visiting her.
Also since she is in ICU she cannot have any flowers. Don't send any. They won't reach her.
Tracy
April 19, 2007
Hello to everyone:
Here's how Fredi is doing.
She is still in the ICU recovering from the embolism. She is taking regular nebulizer treatments and being treated with antibiotics for pneumonia and a UTI. She has started communicating with us but is very tired and week. She doesn't have a lot of memory of the last few days so Sharon and I keep telling her what has happened. Some of that memory is returning. She has started joking with her nurses so her sense of humor is returning. Yesterday Sharon read her the recap of Tuesday's Met's vs. Philliles game and she enjoyed that saying, "Poor Phillies!!" and laughing.
As it happens she does have a second clot in her leg and so will be on Coumadin therapy for life.
Right now we are trying to get a timetable for her release from the ICU (which should be today) and from the hospital.
For the immediate future Fredi has asked not to have any visitors. Please understand.
Thank you all for your love and support.
Tracy
Here's how Fredi is doing.
She is still in the ICU recovering from the embolism. She is taking regular nebulizer treatments and being treated with antibiotics for pneumonia and a UTI. She has started communicating with us but is very tired and week. She doesn't have a lot of memory of the last few days so Sharon and I keep telling her what has happened. Some of that memory is returning. She has started joking with her nurses so her sense of humor is returning. Yesterday Sharon read her the recap of Tuesday's Met's vs. Philliles game and she enjoyed that saying, "Poor Phillies!!" and laughing.
As it happens she does have a second clot in her leg and so will be on Coumadin therapy for life.
Right now we are trying to get a timetable for her release from the ICU (which should be today) and from the hospital.
For the immediate future Fredi has asked not to have any visitors. Please understand.
Thank you all for your love and support.
Tracy
April 18, 2007
Hello everyone and thank you for all your well wishes.
I wanted to let you all know what the last few days have been like. Pretty awful really.
As you know Dr. Fredi was admitted to the hospital on Sunday with a bowel obstruction that they were able to pretty much clear with a few enemas and heavy laxatives. She was to be released back to the nursing home yesterday and things were looking pretty good but on Monday night she suffered a pulmonary embolism which caused her to need intubation and relocation to the ICU. This has all been extremely scary for me and her her. The good part is that she couldn't talk. Yesterday she was stable and uncomfortable. Who can be comfortable with one tube down your throat and another down your nose to remove stomach contents. By yesterday afternoon she was breathing on her own and they removed the tubes. She is on heparin to thin her blood and help dislodge the clot. When she is released she will be given Coumadin for longer term use to prevent additional clots. This presents a whole host of additional challenges.
1. Coumadin causes weakness. I don't know how this will impact her PT.
2. Coumadin comes with a host of dietary restrictions. I'll let you all know what she can and can't have in a later note.
3. She will be a bleeder and cuts will be dangerous.
That's all I can think of right now but I know there are more. Just pray that when the course of Coumadin is complete she will not need additional clotting therapy. It is not something we want her to be on for life.
As of last night she was still in the ICU and receiving nebulizer treatments to clear the gunk from her lungs and her coughs were productive. They should be returning her to a regular room today. I don't know what her phone number will be or whether or not she will want to talk to anyone.
The good part, if there is one, is that when the embolism occurred she was in the hospital and didn't need transport. This could have critically delayed her care.
I will be at the hospital from around 11:30 to 1:45 when I will have to leave to take August to his swim class.
I am going to try to enjoy my day.
Tracy
I wanted to let you all know what the last few days have been like. Pretty awful really.
As you know Dr. Fredi was admitted to the hospital on Sunday with a bowel obstruction that they were able to pretty much clear with a few enemas and heavy laxatives. She was to be released back to the nursing home yesterday and things were looking pretty good but on Monday night she suffered a pulmonary embolism which caused her to need intubation and relocation to the ICU. This has all been extremely scary for me and her her. The good part is that she couldn't talk. Yesterday she was stable and uncomfortable. Who can be comfortable with one tube down your throat and another down your nose to remove stomach contents. By yesterday afternoon she was breathing on her own and they removed the tubes. She is on heparin to thin her blood and help dislodge the clot. When she is released she will be given Coumadin for longer term use to prevent additional clots. This presents a whole host of additional challenges.
1. Coumadin causes weakness. I don't know how this will impact her PT.
2. Coumadin comes with a host of dietary restrictions. I'll let you all know what she can and can't have in a later note.
3. She will be a bleeder and cuts will be dangerous.
That's all I can think of right now but I know there are more. Just pray that when the course of Coumadin is complete she will not need additional clotting therapy. It is not something we want her to be on for life.
As of last night she was still in the ICU and receiving nebulizer treatments to clear the gunk from her lungs and her coughs were productive. They should be returning her to a regular room today. I don't know what her phone number will be or whether or not she will want to talk to anyone.
The good part, if there is one, is that when the embolism occurred she was in the hospital and didn't need transport. This could have critically delayed her care.
I will be at the hospital from around 11:30 to 1:45 when I will have to leave to take August to his swim class.
I am going to try to enjoy my day.
Tracy
March 19, 2007
Hello to all:
This is just to update everyone on Fredi's condition.
The official diagnosis is Guillain-Barre Syndrome although some of her symptoms have been so weird that no one quite knows what to do with them.
As many of you know, she walked into the hospital on February 21 and was diagnosed with diverticulitis. After a few days there she began to complain of rather severe leg pain and spots in front of her eyes that allowed her to see peripherally but not straight in front of her. If you were standing in front of her she would have been able to see your hair but not your face. This was scary and after several complaints about this she finally saw an ophthalmologist the evening before her release. Meanwhile her legs got weaker and weaker. They could find no reasons for these symptoms so.... they released her. I practically carried her up the stairs to her apartment. The next day she couldn't walk at all and could barely manipulate her body. We called 911 to have her bought back to the hospital. Getting her down the stairs was an impossibility for me and Sharon. She was readmitted later that night and over the next few days was subjected to numerous tests, including an arterial biopsy. Many of these tests were to "rule out" a variety of things. Her sight returned a few days later after the administration of steroids which were intended to treat possible arterial inflamation that was never confirmed in the first place. We ended up with the diagnosis of Guillain-Barre.
Having entered this Twilight Zone world it looks like we will emerge on the other side. She has been moved to the Village Nursing Home where she is convalescing and receiving PT and OT every day in order to regain use of her arms and legs. Her spirits are relatively high and she is working hard so she can go home and get back to work.
For those of you who don't know what Guillain-Barre is I am attaching a link to an article on WebMD that should help. The basics? It is an autoimmune disease where the body attacks its own peripheral nerves and the resulting paralysis can potentially invade the whole body and kill you. This has not happened to Fredi.
http://www.webmd.com/brain/tc/Guillain-Barre-Syndrome-Topic-Overview
She has a phone at the rehabilitation facility. Her number is 212-337-9484.
Please keep us in your prayers and thoughts and I will answer any questions as best as I can.
God bless.
Tracy
This is just to update everyone on Fredi's condition.
The official diagnosis is Guillain-Barre Syndrome although some of her symptoms have been so weird that no one quite knows what to do with them.
As many of you know, she walked into the hospital on February 21 and was diagnosed with diverticulitis. After a few days there she began to complain of rather severe leg pain and spots in front of her eyes that allowed her to see peripherally but not straight in front of her. If you were standing in front of her she would have been able to see your hair but not your face. This was scary and after several complaints about this she finally saw an ophthalmologist the evening before her release. Meanwhile her legs got weaker and weaker. They could find no reasons for these symptoms so.... they released her. I practically carried her up the stairs to her apartment. The next day she couldn't walk at all and could barely manipulate her body. We called 911 to have her bought back to the hospital. Getting her down the stairs was an impossibility for me and Sharon. She was readmitted later that night and over the next few days was subjected to numerous tests, including an arterial biopsy. Many of these tests were to "rule out" a variety of things. Her sight returned a few days later after the administration of steroids which were intended to treat possible arterial inflamation that was never confirmed in the first place. We ended up with the diagnosis of Guillain-Barre.
Having entered this Twilight Zone world it looks like we will emerge on the other side. She has been moved to the Village Nursing Home where she is convalescing and receiving PT and OT every day in order to regain use of her arms and legs. Her spirits are relatively high and she is working hard so she can go home and get back to work.
For those of you who don't know what Guillain-Barre is I am attaching a link to an article on WebMD that should help. The basics? It is an autoimmune disease where the body attacks its own peripheral nerves and the resulting paralysis can potentially invade the whole body and kill you. This has not happened to Fredi.
http://www.webmd.com/brain/tc/Guillain-Barre-Syndrome-Topic-Overview
She has a phone at the rehabilitation facility. Her number is 212-337-9484.
Please keep us in your prayers and thoughts and I will answer any questions as best as I can.
God bless.
Tracy
March 3, 2007
Hello to everyone:
For those of you who are unaware our beloved Fredi B. has been in the hospital 1) for treatment of diverticulitis which seems to have been resolved and 2) for diagnosis and treatment of a number of other unrelated symptoms.
While I would love to speak to each and every one of you, I am all talked out.
Suffice to say that she is bored, frustrated, worried, anxious, and in some pain. In the last 24 hours she has been poked, prodded, electrified, cut, x-rayed, MRIed, CTed and they aren't done. The good news is that one of her symptoms seems to be improving with the administration of steroids (a sudden inability to see). Now she can at least read and watch some TV.
On Monday we should know more about her condition. She is at St. Vincent's in good ole' Greenwich Village and if you would like to speak to her and find out if she is up for visitors you can call her at (212) 604-5348. She is in room 739-1.
For those of you who are unaware our beloved Fredi B. has been in the hospital 1) for treatment of diverticulitis which seems to have been resolved and 2) for diagnosis and treatment of a number of other unrelated symptoms.
While I would love to speak to each and every one of you, I am all talked out.
Suffice to say that she is bored, frustrated, worried, anxious, and in some pain. In the last 24 hours she has been poked, prodded, electrified, cut, x-rayed, MRIed, CTed and they aren't done. The good news is that one of her symptoms seems to be improving with the administration of steroids (a sudden inability to see). Now she can at least read and watch some TV.
On Monday we should know more about her condition. She is at St. Vincent's in good ole' Greenwich Village and if you would like to speak to her and find out if she is up for visitors you can call her at (212) 604-5348. She is in room 739-1.
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