(e-mail from B. Parady)
Kind of hard to explain the day and its goings on, so I won't.
Sabina had a storm last night, caught very quickly. First storm in 4 days. She was stabilized during the day. She has had no food in two days and cannot pass anything from her stomach.
The word from Mayer is that he wants to try aggressive rehab at Helen Hayes for a while and if that does not work he will bring her back for further examination. Bottom line the procedure that he proposed, he backed away from, saying that there is progress shown in successive CAT scans, so slow is better and will track progress at HHH. If it does not improve, we are back to
square one, and Columbia.
My prayers are for Sabina to make continued progress, and for Shelly who has to take on a herculian task for 2 months at Helen Hayes.
Showing posts with label prognosis. Show all posts
Showing posts with label prognosis. Show all posts
Monday, June 25, 2007
Wednesday, June 20, 2007
Evening, June 20
(e-mail from B. Parady)
Not such a great day for Sabina. Had a couple of storms. At times felt like she might be responding to me. The later storm seemed to be harking back to when we could not stop them. Her abdominal CAT scan was clear, with no issues so she is being fed again.
We discussed Sabina's prognosis again. She is tentatively scheduled to go back to Helen Hayes this Friday or Monday if they get her stable.
Shelly and I visited the Brady Institute, a facility for TBI that we felt was barely adequate. It was quite distressing to see them warehouse patients that could not be rehabbed by letting them sit in the hallway to give them more stimulation so to speak. The whole area of coma stimulation is kind of difficult to deal with, and has uncertain outcomes. We were given a very slim percentage for a meaningful recovery for Sabina by the NYP doctors.
I personally am not sure how long this all can be kept up, in managing Sabina's storms. As I said earlier, this may be impossible to unwind the heavy narcotics, and the storms in turn, may get a lot worse if the narcotics cannot be tapered. The doctor said it would take over 6 months to remove all the narcotics.
I am praying for Sabina, and for whatever healing the Lord has in store for her.
Not such a great day for Sabina. Had a couple of storms. At times felt like she might be responding to me. The later storm seemed to be harking back to when we could not stop them. Her abdominal CAT scan was clear, with no issues so she is being fed again.
We discussed Sabina's prognosis again. She is tentatively scheduled to go back to Helen Hayes this Friday or Monday if they get her stable.
Shelly and I visited the Brady Institute, a facility for TBI that we felt was barely adequate. It was quite distressing to see them warehouse patients that could not be rehabbed by letting them sit in the hallway to give them more stimulation so to speak. The whole area of coma stimulation is kind of difficult to deal with, and has uncertain outcomes. We were given a very slim percentage for a meaningful recovery for Sabina by the NYP doctors.
I personally am not sure how long this all can be kept up, in managing Sabina's storms. As I said earlier, this may be impossible to unwind the heavy narcotics, and the storms in turn, may get a lot worse if the narcotics cannot be tapered. The doctor said it would take over 6 months to remove all the narcotics.
I am praying for Sabina, and for whatever healing the Lord has in store for her.
Tuesday, June 12, 2007
Evening, June 12
(e-mail from B. Parady)
Not the best of days, not the worst of days.The biggest bugbear these days is the lack of overall progress over time. This was emphasized in the meeting with doctors today. The prognosis so far is that Sabina will not make a significant recovery because of the slow progress since injury.
This is of course what has been weighing on Shelly's heart. I admit that not seeing Sabina do much more than what I saw the last time distresses me. She is storming more but less intensely. She had some bad storms in the last few days that left her a bit more regressed. One comment that struck the doctor, was that I suggested much of the storming may be due to opiate withdrawal. This makes some sense given the increase after the increase in opiod doses. This somewhat jibes with Mayer's offhand comment last week that we need to lift the drugs to quit schlagging her.
I am going out for a second opinion to see where we stand, but am not hopeful at present. I am trying to find some strains of hope wherever I can. I am combing research programs wherever they are to find something--anything--to bring hope. All ideas of treatments that offer hope for storming are welcome.
My prayers are for Sabina's complete recovery, which would be a miracle. Minor miracles to see Sabina respond would be wonderful. I pray for renewed hope for Sabina. I pray for Shelly and her finding hope.
Not the best of days, not the worst of days.The biggest bugbear these days is the lack of overall progress over time. This was emphasized in the meeting with doctors today. The prognosis so far is that Sabina will not make a significant recovery because of the slow progress since injury.
This is of course what has been weighing on Shelly's heart. I admit that not seeing Sabina do much more than what I saw the last time distresses me. She is storming more but less intensely. She had some bad storms in the last few days that left her a bit more regressed. One comment that struck the doctor, was that I suggested much of the storming may be due to opiate withdrawal. This makes some sense given the increase after the increase in opiod doses. This somewhat jibes with Mayer's offhand comment last week that we need to lift the drugs to quit schlagging her.
I am going out for a second opinion to see where we stand, but am not hopeful at present. I am trying to find some strains of hope wherever I can. I am combing research programs wherever they are to find something--anything--to bring hope. All ideas of treatments that offer hope for storming are welcome.
My prayers are for Sabina's complete recovery, which would be a miracle. Minor miracles to see Sabina respond would be wonderful. I pray for renewed hope for Sabina. I pray for Shelly and her finding hope.
Saturday, April 28, 2007
Evening, April 23 (Extra Report)
(e-mail from B. Parady)
We have a lot of good news. To start with Sabina is off the respirator. Amazing. She still breaths through the trach for eases. Second Dr Mayer gives her a 50 percent chance. He says that if Sabina can follow simple commands within one year, she has a chance of recovery. He has seen worse. Her heart is strong and otherwise in good shape.
The doctors are administering a drug cocktail to find Sabina's best place to operate. As soon as medicaid gets approved she can go to Helen Hayes upriver in New York. Dr Mayer is working out options on when to replace her skull flap.
What Sabina needs now is lots of pleasant stimulation via speech. He says that patients do best when they have something to come back to. So I guess this is my appeal for friends to come and visit and visit often.
Amazing. They are really trying to live up to their sign.
We have a lot of good news. To start with Sabina is off the respirator. Amazing. She still breaths through the trach for eases. Second Dr Mayer gives her a 50 percent chance. He says that if Sabina can follow simple commands within one year, she has a chance of recovery. He has seen worse. Her heart is strong and otherwise in good shape.
The doctors are administering a drug cocktail to find Sabina's best place to operate. As soon as medicaid gets approved she can go to Helen Hayes upriver in New York. Dr Mayer is working out options on when to replace her skull flap.
What Sabina needs now is lots of pleasant stimulation via speech. He says that patients do best when they have something to come back to. So I guess this is my appeal for friends to come and visit and visit often.
Amazing. They are really trying to live up to their sign.
Evening, April 21
(e-mail from B. Parady)
Time for me to reveal what was going through my head, and what lead to the effort to transfer Sabina to Columbia. What happened was that I did enough research on Sabina's fevers and condition to know that the fevers meant a very poor prognosis. Why I focused on Columbia was that there some pharmacological means to deal with these lower brain issues (spiking fevers can originate in the hypothalamus). Columbia has the skills to deal with this.
What I am bringing to you is that Dr Otten sat down with us to go over what is going on and what the treatment plans are. When Sabina exhibited her days of responsiveness, that gave everyone, including the doctors at Columbia some hope. What is happening now is that they are titrating her Fentanyl and Demerol to find a spot in consciousness for her to operate. She needs to be relieved of the horrific pains that she is getting enough to mount nerve action. Further on they there employing bromocriptine to control some of the other aspects of the autonomic nervous systems, among other drugs. They are also giving her insulin to control nerve damage in rehab.
The hope is that in the next week they can bring Sabina to some level of consciousness again. Currently she is exhibiting almost not cortical activity, and only brainstem activity. The eye motions are unguided and the body motions are not coordinated. We are back where she was before she became reactive. The hope is that they can bring her out, the fear is that she will not emerge.
Bottom line, Dr Parra gave us the superficial case. Dr Otten is describing the case of hope, very very thin hope. Literally hope against hope. The hope that I wanted to buy by getting Sabina where she is now.
Today Sabina mostly rested and had uneasy moment. This evening she is at ease, and I cannot tell from Shelly if she is showing some signs of comfort, but she may be. They have a sign over the walkways to Milstein that says amazing things happen here. Well, we hope so, and even if they don't we will continue to hold out hope.
My prayers for Sabina to find her consciousness, for her doctors to mount the good fight, for her nurses to manage her through this, and for Shelly and Sabina's friends to stay with her though this. God bless all of you.
Time for me to reveal what was going through my head, and what lead to the effort to transfer Sabina to Columbia. What happened was that I did enough research on Sabina's fevers and condition to know that the fevers meant a very poor prognosis. Why I focused on Columbia was that there some pharmacological means to deal with these lower brain issues (spiking fevers can originate in the hypothalamus). Columbia has the skills to deal with this.
What I am bringing to you is that Dr Otten sat down with us to go over what is going on and what the treatment plans are. When Sabina exhibited her days of responsiveness, that gave everyone, including the doctors at Columbia some hope. What is happening now is that they are titrating her Fentanyl and Demerol to find a spot in consciousness for her to operate. She needs to be relieved of the horrific pains that she is getting enough to mount nerve action. Further on they there employing bromocriptine to control some of the other aspects of the autonomic nervous systems, among other drugs. They are also giving her insulin to control nerve damage in rehab.
The hope is that in the next week they can bring Sabina to some level of consciousness again. Currently she is exhibiting almost not cortical activity, and only brainstem activity. The eye motions are unguided and the body motions are not coordinated. We are back where she was before she became reactive. The hope is that they can bring her out, the fear is that she will not emerge.
Bottom line, Dr Parra gave us the superficial case. Dr Otten is describing the case of hope, very very thin hope. Literally hope against hope. The hope that I wanted to buy by getting Sabina where she is now.
Today Sabina mostly rested and had uneasy moment. This evening she is at ease, and I cannot tell from Shelly if she is showing some signs of comfort, but she may be. They have a sign over the walkways to Milstein that says amazing things happen here. Well, we hope so, and even if they don't we will continue to hold out hope.
My prayers for Sabina to find her consciousness, for her doctors to mount the good fight, for her nurses to manage her through this, and for Shelly and Sabina's friends to stay with her though this. God bless all of you.
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