This blog has magic. I have found that if I post my fears, concerns or happiness...wait a few days and the OPPOSITE HAPPENS! If I say Jack is having a good day, than the next stinks. If I say he is bad, than the next he rallies...
See where this is going? Last post I was doom and gloom. Jack had a really bad day, mom was really upset and things looked really bad. Guess what happened. Ok, prepare yourselves.
Jack...Is...Home...
The day after the icky day, something clicked. Like a light switch. He woke up, looked at mom and said, "why am I here?" And he has been with us since. No lost lucidity. No agitation. It's amazing and I will post more about the turn around and what has happened since soon. He has a long way to go, but we played scrabble last night, he MADE dinner last night (mom had a fit) and he is balancing his checkbook. He is a miracle. And it's overwhelming.
I'm going for a run...will post more asap.
THANK YOU FOR YOUR THOUGHTS AND PRAYERS! Thank you, thank you, thank you...
Saturday, June 13, 2009
Wednesday, June 10, 2009
Holy New Floor, Batman!
I just wanted to be creative with the post title. In fact, this post has nothing to do with Batman in the slightest. But it DOES have something to do with a new floor!
So, Jack was moved...he is now onto the rehab floor. There is this amazing Independance Square with a grocery store, post office, car, bed...all in the name of teaching Jack how to live again...it's really cool. BUT Jack is struggling with his lucidity. He goes from ok to off-the-charts confused. He is confused and angry.
Mom is at her wits end. I am not sure if he can home or not, to be honest. I don't know if he can get better from this.
Things just don't look so good, I guess.
So, Jack was moved...he is now onto the rehab floor. There is this amazing Independance Square with a grocery store, post office, car, bed...all in the name of teaching Jack how to live again...it's really cool. BUT Jack is struggling with his lucidity. He goes from ok to off-the-charts confused. He is confused and angry.
Mom is at her wits end. I am not sure if he can home or not, to be honest. I don't know if he can get better from this.
Things just don't look so good, I guess.
Thursday, June 4, 2009
*sigh*
Yeah. The fates were listening. Mom called this morning and told me that Jack was back to where he was two days ago.
The doctors said that there is no magic pill. They might have to keep adjusting his meds as he has been on them all so long that maybe he is developing a resistance to them.
Man, oh man, oh man, oh man...
The doctors said that there is no magic pill. They might have to keep adjusting his meds as he has been on them all so long that maybe he is developing a resistance to them.
Man, oh man, oh man, oh man...
yesterday and my high horse
Ok, I'm not a doctor. Don't play one on TV. Never even had a pre-med class. BUT, after a lifetime of my own health care needs and my ability to read information on the INTERNET, I can get a decent clue as to what is going on.
When Jack was in his coma, there were giving him 5 mg an hour of Ativan. That's 5.0 mg. Ativan is a sedative. If you have panic attacks, or if you are anxious for whatever reason - the doctor might give you a script for it. Typically, people can take 0.5 - 2.0mg a day and it'll mellow 'em out and make them sleep like a baby. The problem is that it's HIGHLY addictive. If you take the stuff everyday for a week, and then suddenly stop - you'll feel it. Your heart will race, chest tighten, won't be able to sleep. It works through in a few days - but, it's awful while it lasts. You really need to wean. Trust me on this one.
That's for only 0.5 mg a DAY. Jack had 5.0 an HOUR for 4 weeks...he proved very hard to keep asleep. The man blew through everything. When the pulled it from him, they did it quickly. If you remember, he became non responsive so they woke him up fast...
They didn't wean him.
I told the nurse, the doctor, the hospitalist, the PT guy, the maintenance person, the guy who drives the Zamboni down the hallway, the person in room 218E...anyone who would listen, that Jack was withdrawing. I DO believe that he is definitely dealing with hospital psychosis. BUT, it was extreme psychosis. There was something else going on. I just knew it.
When I told him what it thought I was, the hospitalist patted me on the head, acted like I was just a silly women who was distraught and told me that the Ataivan would be out of his system by now. He simply didn't know what it was. He was going to send psych up.
I'm sending him a link to wikipedia.com - subject 'ativan' - but I digress.
After an awful day, day before yesterday (the Coretta Scott King Day - still giggling over that one), psych came up. Guess what they said??? Yeah. "OOoooh, they pulled that Ativan too quickly. We need to get him back on it and wean him properly..."
AGGGGGGGGGGGGGGGGHHHHHHHHHHHH!!!
They also put him on something for his now called 'delirium' (psychosis) which is temporary and because of all he has been through and where he is at.
SO, he is now on a nice 3.0 mg a day and a nice psychosis-preventum-medicine (made that up (duh) - don't know what it's called.) and yesterday was a great day!!! He was lucid. He walked the hallways. Shaved himself. Brushed his teeth. Ate like a horse. My kids, for the first time in 7 weeks, got to see Jack too. Hannah was scared. She knows how sick Jack has been and she didn't want to see him that way. But, I made her go in and say hi and when we left, she said, "mom, he looked fine. Not sick at all. Just like Jack." Music to my ears!
And, this is great, he called mom last night.
Mom: "hello?"
Jack: "Hi"
Mom: "JACK?"
Jack: "yeah. What did you have for supper?"
He just wanted to talk. *tears* When you are so scared that someone is going to die. When you have prepared yourself for the worst. When you have been told that you might have to make a decision...and then, weeks later, that person calls you and asks what you had for dinner. Well, it's a moment in life that can't be explained.
I just hope that you never have to know it.
So, here's to a good today*
*disclaimer to the fates- I-in-no-way-expect-Jack-to-be-as-good-as-yesterday-and-fully-understand-that-today-might-have-it's-setbacks. So, back off!**
**You guys think this will help keep the fates at bay? : ) Yeah, I'm kidding. Kind-of.
When Jack was in his coma, there were giving him 5 mg an hour of Ativan. That's 5.0 mg. Ativan is a sedative. If you have panic attacks, or if you are anxious for whatever reason - the doctor might give you a script for it. Typically, people can take 0.5 - 2.0mg a day and it'll mellow 'em out and make them sleep like a baby. The problem is that it's HIGHLY addictive. If you take the stuff everyday for a week, and then suddenly stop - you'll feel it. Your heart will race, chest tighten, won't be able to sleep. It works through in a few days - but, it's awful while it lasts. You really need to wean. Trust me on this one.
That's for only 0.5 mg a DAY. Jack had 5.0 an HOUR for 4 weeks...he proved very hard to keep asleep. The man blew through everything. When the pulled it from him, they did it quickly. If you remember, he became non responsive so they woke him up fast...
They didn't wean him.
I told the nurse, the doctor, the hospitalist, the PT guy, the maintenance person, the guy who drives the Zamboni down the hallway, the person in room 218E...anyone who would listen, that Jack was withdrawing. I DO believe that he is definitely dealing with hospital psychosis. BUT, it was extreme psychosis. There was something else going on. I just knew it.
When I told him what it thought I was, the hospitalist patted me on the head, acted like I was just a silly women who was distraught and told me that the Ataivan would be out of his system by now. He simply didn't know what it was. He was going to send psych up.
I'm sending him a link to wikipedia.com - subject 'ativan' - but I digress.
After an awful day, day before yesterday (the Coretta Scott King Day - still giggling over that one), psych came up. Guess what they said??? Yeah. "OOoooh, they pulled that Ativan too quickly. We need to get him back on it and wean him properly..."
AGGGGGGGGGGGGGGGGHHHHHHHHHHHH!!!
They also put him on something for his now called 'delirium' (psychosis) which is temporary and because of all he has been through and where he is at.
SO, he is now on a nice 3.0 mg a day and a nice psychosis-preventum-medicine (made that up (duh) - don't know what it's called.) and yesterday was a great day!!! He was lucid. He walked the hallways. Shaved himself. Brushed his teeth. Ate like a horse. My kids, for the first time in 7 weeks, got to see Jack too. Hannah was scared. She knows how sick Jack has been and she didn't want to see him that way. But, I made her go in and say hi and when we left, she said, "mom, he looked fine. Not sick at all. Just like Jack." Music to my ears!
And, this is great, he called mom last night.
Mom: "hello?"
Jack: "Hi"
Mom: "JACK?"
Jack: "yeah. What did you have for supper?"
He just wanted to talk. *tears* When you are so scared that someone is going to die. When you have prepared yourself for the worst. When you have been told that you might have to make a decision...and then, weeks later, that person calls you and asks what you had for dinner. Well, it's a moment in life that can't be explained.
I just hope that you never have to know it.
So, here's to a good today*
*disclaimer to the fates- I-in-no-way-expect-Jack-to-be-as-good-as-yesterday-and-fully-understand-that-today-might-have-it's-setbacks. So, back off!**
**You guys think this will help keep the fates at bay? : ) Yeah, I'm kidding. Kind-of.
Tuesday, June 2, 2009
Symptoms
Uncle Bob, I apologize for not talking about the symptoms yet...this is what happened in a nutshell.
The last time I saw Jack well was Easter. They came over for lunch. On Tuesday he began to feel ill. Weak and sweats mostly. Everyone thought he had the flu. By Friday, it was obviously something else. Mom and Jack went to the ER where he went downhill very quickly. They worked hard to keep him alive as his BP was falling and his organs were starting to fail. The hospital Chaplin called me and Melissa and we all rushed in.
They had no idea what was wrong with him but suspected sepsis pretty quickly. After about 100 tests they said that he had inflammation around his organs - but mostly his pancreas signaling pancreatitis. He also had some pneumonia. Which came first - the puncreatitis or the pneumonia? We don't know. He had no pain that we know of, anywhere. Other than the flu symptoms, there was no sign. One illness can lead to another...or it can be the other way around. He was taken to ICU quickly after he was stabilized.
Our good luck in all of this has been Dr. Patel. He was the ICU doc this day and also happens to be a tremendous pulmonary doctor. He is soft-spoken but incredibly kind. He has taken Jack's case and has been there to the fullest. He told us, as nicely as possibly, that Jack was VERY sick and that he was in the best place for treatment. I have never had to have a doctor tell me bad news like this and always wondered how they did it. I now know and am glad it was Dr. Patel who did it.
They treated him with the strongest antibiotics as possible, immediately. He was awake but slightly confused at this point. They were giving him oxygen and watching him like a hawk. He was improving a bit after the second day. The antibiotics were killing the infection ravaging his body and it was hopeful.
Day three all hell broke loose. Suddenly he was panting like a dog. The strongest oxygen feed wasn't helping. He was going down hill. You guessed it...ARDS. Dr. Patel came in after they vented Jack and told us the devastating news. Though he didn't go into much ARDS specific information, he did tell us that Jack was on the HIGHEST setting on the vent. That his lungs basically had holes in them and that the vent would either help Jack heal OR his organs would start to fail from lack of oxygen and we would have to make a decision. There was NOTHING else they could do. I will never, ever forget mom's face...ever...
They put him to sleep soon after and the blog takes over from there. I wish there was something that really clued us in - but it just snuck up on us.
I watched Jack today for mom as she had appointments and actual life to attend to this AM. I went in at 8am and fed him breakfast, and then lunch. He did well eating but is SO confused today. It's extremely concerning and so stressful to constantly keep him in bed and TRY to keep him relaxed...but he also can be so funny. I asked him this AM who I was and he said Coretta Scott King. Wha? Gotta get your laughs where you can. : ) He was on a southern kick today, for some reason. He really wanted to talk about the South...I asked him question after question about his trips to NOLA and his love of Biloxi. It did seem to help keep him calmer. But, it's enough to rip your heart out too.
I'll update if anything changes tonight.
The last time I saw Jack well was Easter. They came over for lunch. On Tuesday he began to feel ill. Weak and sweats mostly. Everyone thought he had the flu. By Friday, it was obviously something else. Mom and Jack went to the ER where he went downhill very quickly. They worked hard to keep him alive as his BP was falling and his organs were starting to fail. The hospital Chaplin called me and Melissa and we all rushed in.
They had no idea what was wrong with him but suspected sepsis pretty quickly. After about 100 tests they said that he had inflammation around his organs - but mostly his pancreas signaling pancreatitis. He also had some pneumonia. Which came first - the puncreatitis or the pneumonia? We don't know. He had no pain that we know of, anywhere. Other than the flu symptoms, there was no sign. One illness can lead to another...or it can be the other way around. He was taken to ICU quickly after he was stabilized.
Our good luck in all of this has been Dr. Patel. He was the ICU doc this day and also happens to be a tremendous pulmonary doctor. He is soft-spoken but incredibly kind. He has taken Jack's case and has been there to the fullest. He told us, as nicely as possibly, that Jack was VERY sick and that he was in the best place for treatment. I have never had to have a doctor tell me bad news like this and always wondered how they did it. I now know and am glad it was Dr. Patel who did it.
They treated him with the strongest antibiotics as possible, immediately. He was awake but slightly confused at this point. They were giving him oxygen and watching him like a hawk. He was improving a bit after the second day. The antibiotics were killing the infection ravaging his body and it was hopeful.
Day three all hell broke loose. Suddenly he was panting like a dog. The strongest oxygen feed wasn't helping. He was going down hill. You guessed it...ARDS. Dr. Patel came in after they vented Jack and told us the devastating news. Though he didn't go into much ARDS specific information, he did tell us that Jack was on the HIGHEST setting on the vent. That his lungs basically had holes in them and that the vent would either help Jack heal OR his organs would start to fail from lack of oxygen and we would have to make a decision. There was NOTHING else they could do. I will never, ever forget mom's face...ever...
They put him to sleep soon after and the blog takes over from there. I wish there was something that really clued us in - but it just snuck up on us.
I watched Jack today for mom as she had appointments and actual life to attend to this AM. I went in at 8am and fed him breakfast, and then lunch. He did well eating but is SO confused today. It's extremely concerning and so stressful to constantly keep him in bed and TRY to keep him relaxed...but he also can be so funny. I asked him this AM who I was and he said Coretta Scott King. Wha? Gotta get your laughs where you can. : ) He was on a southern kick today, for some reason. He really wanted to talk about the South...I asked him question after question about his trips to NOLA and his love of Biloxi. It did seem to help keep him calmer. But, it's enough to rip your heart out too.
I'll update if anything changes tonight.
45
Yesterday marked day 45 in the hospital.
I just want to end this post there.
I find it hard to know what else to say. All of the flowery words and insightful hospital observations are dull to me now. I don't want to say anything positive for fear that it'll just have to be recanted later. I don't want to be negative because...well, because.
Here's the facts...Jack got his trachea out yesterday. Ate two trays of food so he didn't have to get his peg in and they are giving him another few days to get his calorie intake up before making the final decision about the surgery. He actually walked down the hall with help from PT. He is off all oxygen. He sits in the chair and can talk the staff's leg off very lucidly (most of the time)about his past, thoughts, etc.
But, when it's just mom (and me - but, mom REALLY gets it) he just loses his reality. He gets mad. frustrated. paranoid. Tries to leave. It's impossible to reason with him.
No, Jack, the staff isn't out to get you. No, Jack, there isn't a conspiracy against you. No, Jack, get back in bed because if you leave, you'll get sick again.
And this is the easy stuff to deal with. If you can imagine any ridiculous scenario the over stimulated brain can come up - Jack can top it. I try to reason with him. Mom, tired of trying to reason with him, mostly just agrees or ignores him (or tries to - but he can be mean.) But, after doing some research on Hospital Psychosis I realize we're supposed to distract him. Lead his mind somewhere else. But, he is so stubborn. Probably why he's still alive, to be honest. But it is playing against him mentally.
This is temporary. I know why he has this (can you imagine being in a hospital this long?) and it's actually very common. But...
I know that life goes on for everyone and I want to let you know that I appreciate your calls, emails, comments and support that you give mom. She is up there everyday, all day...
I just want to end this post there.
I find it hard to know what else to say. All of the flowery words and insightful hospital observations are dull to me now. I don't want to say anything positive for fear that it'll just have to be recanted later. I don't want to be negative because...well, because.
Here's the facts...Jack got his trachea out yesterday. Ate two trays of food so he didn't have to get his peg in and they are giving him another few days to get his calorie intake up before making the final decision about the surgery. He actually walked down the hall with help from PT. He is off all oxygen. He sits in the chair and can talk the staff's leg off very lucidly (most of the time)about his past, thoughts, etc.
But, when it's just mom (and me - but, mom REALLY gets it) he just loses his reality. He gets mad. frustrated. paranoid. Tries to leave. It's impossible to reason with him.
No, Jack, the staff isn't out to get you. No, Jack, there isn't a conspiracy against you. No, Jack, get back in bed because if you leave, you'll get sick again.
And this is the easy stuff to deal with. If you can imagine any ridiculous scenario the over stimulated brain can come up - Jack can top it. I try to reason with him. Mom, tired of trying to reason with him, mostly just agrees or ignores him (or tries to - but he can be mean.) But, after doing some research on Hospital Psychosis I realize we're supposed to distract him. Lead his mind somewhere else. But, he is so stubborn. Probably why he's still alive, to be honest. But it is playing against him mentally.
This is temporary. I know why he has this (can you imagine being in a hospital this long?) and it's actually very common. But...
I know that life goes on for everyone and I want to let you know that I appreciate your calls, emails, comments and support that you give mom. She is up there everyday, all day...
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