To be honest, I always bite my tongue after posting such positive posts as yesterday's. I am VERY fatalistic and am pretty sure that the "fates" are a row of men and women in black robes ( a la Supreme court...or the movie 'Defending your Life' take your pick) sitting and waiting for the positive thoughts to be verbalized only to show me how wrong I am. (cue witch cackle) Well, today Jack was a bit more confused than yesterday. He thought certain people came to visit and that certain things had happened that didn't...I suppose that he is dreaming and he gets reality and the world of sleep confused. Regardless, it can feel like a bit of a blow. I do find thought that we need to measure things as weeks instead of days. As the days have a tendency to change at will...but if we look back at how a week was...well, it's easier to judge his progress. Tomorrow he may have to get a feeding tube in his tum-tum ( a 'peg') as he isn't eating enough to sustain his caloric needs. It may sound like a set back of sorts, but really we expected it. He has only been eating solid food for a short time (three days) and it's pretty unrealistic that after being on a feeding tube through his nose for 6 weeks, that he is going to be able to snarf his lunch like old times. Though, can I also say, for example, this morning, the hospital brought breakfast at 6:30am and no one helped to feed him. Mom got in at 8:00am and his breakfast was cold. He didn't want it. And we don't blame him. Plus, he is so weak, it's actually work to eat...so, it might be for the best. The only part we don't like is that it has to stay in a full month as that is how long it takes to heal. *sigh*
Seriously, guys, this is the hell that is ARDS. It's devastating. It's more than just the disease itself. It's everything that comes with it. If you know ANYONE who can benefit from this blog, PLEASE feel free to forward the addy. When you are dealing with this horrific experience, you feel as if you are so alone. If someone can gain some peace, or help from what we are going through. It would be a wonderful.
Love you all!
Sunday, May 31, 2009
Saturday, May 30, 2009
WOW.
Well guys, it's official...I can say it with all of the confidence in the world...Jack is ON THE MEND!!!! He is doing GREAT! I think, my friends, that we are officially out of the woods.
And, it makes me want to cry, laugh, and shout! YAY!!!
I will go into the last few days in a bit, but I wanted to let you know that he is doing tremendously...
Wow.
And, it makes me want to cry, laugh, and shout! YAY!!!
I will go into the last few days in a bit, but I wanted to let you know that he is doing tremendously...
Wow.
Thursday, May 28, 2009
The talking continues...some of it makes sense and some of it doesn't. We should find out today if he has to have a feeding tube inserted into his tummy. The tube in his nose has been there for 5 weeks now and the doctors are afraid it will start causing problems in his sinuses.
We still need prayers and good vibes! While he maybe "out of the woods" he still isn't quite home free.
We still need prayers and good vibes! While he maybe "out of the woods" he still isn't quite home free.
Tuesday, May 26, 2009
Speaking the Truth
For quite some time, we have felt paranoid. As if the stiff, white coat with the cursive monogram on it's pocket has known all along that Jack will never get well. That it was hiding the horrible truth of Jack's undeniable demise. We began examining the coat's voice inflection and watching it's body language for any indication that the coat's words of good tidings may simply be a cover-up for a horrible truth. Then, after words were exchanged, the stiff, white coat with it's cursive monogram would walk out the door not be seen from again until tomorrow.
In time, the IV bags mocked us too. Their shiny plastic packaging would fold as they emptied into Jack, making their once tight labeled faces into a sad grimace. And the noises the machines would make when they had spent their contents! As if it were OUR fault they were no longer full. And if the nurses couldn't come right then, the bags didn't care. They begged to be changed, getting louder and Louder and LOUDER...and then, right before we were sure there would be an explosion of some kind, the nurses would wander in and reset the bags. And, with that, we waited for it all to just start again. The walls begin to crowd. The floor's too-shiny-white is as painful to the eyes as snow blindness. The machine they use to MAKE the snow white floors roars across the floor day in and day out. They should pass out ear muffs to those who will be in a 10 foot radius of this mini zamboni. After 6 weeks in a hospital, you begin to see that anything is possible.
Anything...is...possible. And today, we hit another stride, a stride we were beginning to think was never going to come. For the first time, in 6 weeks, Jack spoke. The edgy silence that poked you as you sat in the quiet of his room, was broken! They put in a smaller trachea, and with a cap placed over the hole, Jack can speak!
For the past three weeks or so, he has been moving his mouth forming words that at times looked like prayer, and other times looked as if he was letting someone have a piece of his mind. He'd ask for things he never got because we couldn't understand him. He'd roll his eyes in anger or close them in defiance. It was difficult. We wondered just how much Jack was in there...or was he even in there at all?
His first words were his full name : "Jack Alan Huffman" A nurse asked him the questions and he did pretty well! He knew his birthday, but thought he was in Bloomington. He knew he was in a hospital and, with some help, realized he was in Memorial in Springfield. When the nurse asked Jack who mom was, he responded with a spirited, "SHARON!" He knew he had two grand kids and told their names. Uh...though...he said he had two children...both boys. *ahem* They set him straight! : )
Mom said that when he was done with the questioning and wanted to rest, that there was something there inside of him again that wasn't there before. Maybe a peace? Maybe he feels now that he is going to get better or maybe it's the relief of knowing he can be heard again. Whatever the reason, the peace was there. It was a good day for us.
Stiff, white coats and IV bags be dammed. Yes, we couldn't do it without them - but it's pretty clear that love, perseverance and stamina has a lot to do with it too.
I love you, Mom.
In time, the IV bags mocked us too. Their shiny plastic packaging would fold as they emptied into Jack, making their once tight labeled faces into a sad grimace. And the noises the machines would make when they had spent their contents! As if it were OUR fault they were no longer full. And if the nurses couldn't come right then, the bags didn't care. They begged to be changed, getting louder and Louder and LOUDER...and then, right before we were sure there would be an explosion of some kind, the nurses would wander in and reset the bags. And, with that, we waited for it all to just start again. The walls begin to crowd. The floor's too-shiny-white is as painful to the eyes as snow blindness. The machine they use to MAKE the snow white floors roars across the floor day in and day out. They should pass out ear muffs to those who will be in a 10 foot radius of this mini zamboni. After 6 weeks in a hospital, you begin to see that anything is possible.
Anything...is...possible. And today, we hit another stride, a stride we were beginning to think was never going to come. For the first time, in 6 weeks, Jack spoke. The edgy silence that poked you as you sat in the quiet of his room, was broken! They put in a smaller trachea, and with a cap placed over the hole, Jack can speak!
For the past three weeks or so, he has been moving his mouth forming words that at times looked like prayer, and other times looked as if he was letting someone have a piece of his mind. He'd ask for things he never got because we couldn't understand him. He'd roll his eyes in anger or close them in defiance. It was difficult. We wondered just how much Jack was in there...or was he even in there at all?
His first words were his full name : "Jack Alan Huffman" A nurse asked him the questions and he did pretty well! He knew his birthday, but thought he was in Bloomington. He knew he was in a hospital and, with some help, realized he was in Memorial in Springfield. When the nurse asked Jack who mom was, he responded with a spirited, "SHARON!" He knew he had two grand kids and told their names. Uh...though...he said he had two children...both boys. *ahem* They set him straight! : )
Mom said that when he was done with the questioning and wanted to rest, that there was something there inside of him again that wasn't there before. Maybe a peace? Maybe he feels now that he is going to get better or maybe it's the relief of knowing he can be heard again. Whatever the reason, the peace was there. It was a good day for us.
Stiff, white coats and IV bags be dammed. Yes, we couldn't do it without them - but it's pretty clear that love, perseverance and stamina has a lot to do with it too.
I love you, Mom.
Sunday, May 24, 2009
connections
I hope you are all well. I apologize for not posting the past few days. I have five kids here ages 7-15 and the computer becomes a precious commodity. *sigh*
Jack was moved to another floor. Something that sounds good in theory, but has proven it have it's own obstacles. As odd as it sounds, having him moved to a lesser critical area hasn't been the relief I personally was hoping for. I think that for one thing, his room in ICU, a room we became quite accustomed to, was large and had a nice big window. His room was right across the nurses desk. We got to know the staff. Now, he has been moved to a higher patient to nurse ratio. The room is small. Mom said it was called a 'pod' I'm not sure if she was kidding - but either way it's fitting.
Also, I think that he was becoming well in ICU - at least as far as context is concerned. He was being weaned off of his vent, while others around us were still struggling with their own vent issues. He was waking up while others were still medicated. The family of the man next door to Jack was having to consider turning off his vent as his prognosis wasn't good. And while we feel for those still fighting for their lives, it was obvious that Jack was getting better! He out of the woods, so to speak. In ICU, he was one of the "well" ones.
Enter intermediate care...suddenly, the strides look so small. Ok, so, he's awake. But, he can't speak because of his trach. He is off the vent but still on oxygen (and doing well!) He is still strapped down so he can't rip out his feeding tube or trach. But then, you can hear the guy in the room next to you talking about how cold his coffee is. You see patients walking down the hall and back. You see the food cart coming to other patients, but not yours. And you realize how far he has to go. It sounds so negative, I know. And we are so very thankful for how he gotten better. The nurse called him Miracle Man yesterday. And, it's true. He was dying. And he fought all odds! Every single one of them....
He obviously has a lot to work on. He needs physical rehab and his brain is still fighting for the lucidity he once knew. Sometimes he sees things as they should be. Other times, he is confused. And yet others, he looks depressed. One of the things we might have to face post ARDS is Post traumatic Stress Disorder, memory loss, depression...Yesterday, I took up pictures of things that would spark good memories. Information about his beloved Cardinals. I think that he needs his synapses to be reintroduced - like old friends. I am afraid that Jack sees this hospital room and the tubes and the trach as too much of a permanent reality. When, in fact, its just a stepping stone.
We need to reconnect him to the life he loved.
Jack was moved to another floor. Something that sounds good in theory, but has proven it have it's own obstacles. As odd as it sounds, having him moved to a lesser critical area hasn't been the relief I personally was hoping for. I think that for one thing, his room in ICU, a room we became quite accustomed to, was large and had a nice big window. His room was right across the nurses desk. We got to know the staff. Now, he has been moved to a higher patient to nurse ratio. The room is small. Mom said it was called a 'pod' I'm not sure if she was kidding - but either way it's fitting.
Also, I think that he was becoming well in ICU - at least as far as context is concerned. He was being weaned off of his vent, while others around us were still struggling with their own vent issues. He was waking up while others were still medicated. The family of the man next door to Jack was having to consider turning off his vent as his prognosis wasn't good. And while we feel for those still fighting for their lives, it was obvious that Jack was getting better! He out of the woods, so to speak. In ICU, he was one of the "well" ones.
Enter intermediate care...suddenly, the strides look so small. Ok, so, he's awake. But, he can't speak because of his trach. He is off the vent but still on oxygen (and doing well!) He is still strapped down so he can't rip out his feeding tube or trach. But then, you can hear the guy in the room next to you talking about how cold his coffee is. You see patients walking down the hall and back. You see the food cart coming to other patients, but not yours. And you realize how far he has to go. It sounds so negative, I know. And we are so very thankful for how he gotten better. The nurse called him Miracle Man yesterday. And, it's true. He was dying. And he fought all odds! Every single one of them....
He obviously has a lot to work on. He needs physical rehab and his brain is still fighting for the lucidity he once knew. Sometimes he sees things as they should be. Other times, he is confused. And yet others, he looks depressed. One of the things we might have to face post ARDS is Post traumatic Stress Disorder, memory loss, depression...Yesterday, I took up pictures of things that would spark good memories. Information about his beloved Cardinals. I think that he needs his synapses to be reintroduced - like old friends. I am afraid that Jack sees this hospital room and the tubes and the trach as too much of a permanent reality. When, in fact, its just a stepping stone.
We need to reconnect him to the life he loved.
Friday, May 22, 2009
Scenery
There isn't a whole lot to do while waiting in the ICU lounge. The novelties that can be found outside of the 7th floor window have long lost their shine. The trees have certainly gained weight with their heavy green leaves dripping off their once bare branches - branches that were bare only a few short weeks ago! The pointy, granite top of the Lincoln's tomb juts out of the tree tops. How many times I have mentally shaved off the obtrusion to make a nice, clean line...it's a pretty clear sign a change of scenery is in order.
And a change of scenery we very well might get! Dr. Patel told us that when a bed is open we will more than likely be moved to the second floor! It's a general floor...a sign of getting better. Jack is more than likely going to be in rehab for awhile. On average, a patient loses 3% of muscle mass a day when in the hospital. He will, god willing, be off of the vent for good now. He just completed a 24 hour wean. Can't get much better!!! The trachea will stay in for the next week in case something comes up and he needs it again. It's very touch and go...very slow...but SO much better.
I should note, that he had another procedure today. They took a scope and checked out his esophagus as there has been some blood showing up in his stool. They did find some polyps and are checking them out.
More later!
And a change of scenery we very well might get! Dr. Patel told us that when a bed is open we will more than likely be moved to the second floor! It's a general floor...a sign of getting better. Jack is more than likely going to be in rehab for awhile. On average, a patient loses 3% of muscle mass a day when in the hospital. He will, god willing, be off of the vent for good now. He just completed a 24 hour wean. Can't get much better!!! The trachea will stay in for the next week in case something comes up and he needs it again. It's very touch and go...very slow...but SO much better.
I should note, that he had another procedure today. They took a scope and checked out his esophagus as there has been some blood showing up in his stool. They did find some polyps and are checking them out.
More later!
Wednesday, May 20, 2009
Update
The hospital called my mom and there has been no stroke and there is no bleeding in his brain. Tomorrow we will talk to the doctor about our next step. The agitation is a huge issue. Perhaps he just needs time to get the drugs out of his system??
I will update as soon as we know. Thank you for your thoughts and support. And your kind words about my writing! Maybe I will write more for publication, we'll see.
I haven't forgotten that I need to chronicle how Jack has gotten here - his symptoms and such.
Love, Becky
I will update as soon as we know. Thank you for your thoughts and support. And your kind words about my writing! Maybe I will write more for publication, we'll see.
I haven't forgotten that I need to chronicle how Jack has gotten here - his symptoms and such.
Love, Becky
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