Tuesday, January 13, 2009
Moments of Beauty
It's 2am on Wednesday morning Haley, Kevin, Trent and I are sitting with Jerry in his room as the dialysis machine sighs while cleaning Jerry's blood. Sherri has done a masterful job in updating everyone on Jerry's condition, but for those of you who aren't here to witness it there have been some really beautiful moments that I want to share. The Cahill clan took over one of the waiting rooms in the ICU for the last several days. It is full of loved ones 24 hours a day with people sleeping on the floor and under the furniture to avoid the glare of the lights that don't turn off. You don't realize how wide a path Jerry has made until you see the many different people who have come to him, family, friends, young, old all brought together by their love for this special guy. Then there are the moments, a father lovingly shaving his stricken son, a sister arranging stuffed animals and pictures, a friend swabbing Jerry's dry mouth with Diet Coke, friends arriving with homemade dinner for the entire group, a lawyer friend setting his own emotions aside to help guide Jerry through the legal maze of his situation, an expectant sister spending her third night sleeping on the hospital floor and then feeling guilty when she had to leave to go to the ER to care for her own health issues, a child sharing his fifth birthday with his favorite uncle in the ICU, a mother assuring her son with a kiss, the way he responds to someone holding his hand, or grandma margy taking on babysitting duties so the exhausted dads can take their shift to comfort their brother-in-law . The room overflows with symbols of love sent from every corner of the country. Everyday we take time to read the blog posts and cards aloud and are constantly reminded of the love and good carma coming are way. I just thought you should all know that no little gesture goes overlooked, even in the midst of these very difficult times the Cahill family has stuck together like glue. Its been and honor and a privileged to witness people rising to the occasion and creating these moments of beauty.
What a Roller Coaster Ride!
Thank you for riding, pull the lap belt tight across your lap and please be sure to keep your hands and feet inside the vehicle at all times.
Whew! What a ride the past few days have been.
We received the test results back from today on the CT scan.. and let me tell you, it's pretty darn good after everything else we have heard.
For the most part, the scans looked about the same, HOWEVER, the lymph nodes do not look as swollen and the tumor appears to be about the same size. They are currently putting him on dialysis and he will begin receiving continuing dialysis for an indefinite period of time. They will get rid of the toxins in his system and then begin getting rid of the fluids in his system. Once the dialysis begins on a regular basis, his kidneys should be able to pump the toxins out of his body.
He is still connected to a ventilator and will remain on it for at least 24-36 more hours. While he is on the ventilator the doctor will get additional drugs into his system that they might not have been able to while he wasn't on the machine. Once they start to take him off the ventilator, it will take a few days as they want to be sure that he will be able to breath on his own without complications. All told, it looks like Jerry may be on the ventilaor for about 5 days (if things go well).
He is now re-connected to nutrients as well.
Jerry is aware of the ventilaor and does not like having it (would you?) he has abeen trying to remove it from his mouth a few times. As long as there are 2 people back there, the nurses will not have to strap him down to prevent him from pulling the tube out of his mouth. I think we have the covered with as many of us as their are!
After we received this news, we were all extremely relieved while at the same time a bit skeptical. Can it be real? Is this really a shift in his prognosis? it sure seems that way... what a ride!
On a side note, we were all so excited to have this good news and start planning "time away in a real bed and showers" that we came up with a plan of shifts to keep at least 2 people here at all times in with Jerry. Well, that took a little time and became a bit of a show (who knew planning 3 hours shifts for the next 24 hours would be so difficult?), but was nothing compared to the sideshow that was going on around this: the great pillow debacle of 2009. Determing what stuff to leave in the Camp Jerry waiting room and what to take home, became a bit of a struggle and a comedy of errors. (You really had to be there to enjoy the humor, so just take our word on it).
So we shall see how the next few days and weeks pan out, but we are definitely in the zone for improvement now. Next stop: CHEMO in 2 weeks.... that is our goal today.
Whew! What a ride the past few days have been.
We received the test results back from today on the CT scan.. and let me tell you, it's pretty darn good after everything else we have heard.
For the most part, the scans looked about the same, HOWEVER, the lymph nodes do not look as swollen and the tumor appears to be about the same size. They are currently putting him on dialysis and he will begin receiving continuing dialysis for an indefinite period of time. They will get rid of the toxins in his system and then begin getting rid of the fluids in his system. Once the dialysis begins on a regular basis, his kidneys should be able to pump the toxins out of his body.
He is still connected to a ventilator and will remain on it for at least 24-36 more hours. While he is on the ventilator the doctor will get additional drugs into his system that they might not have been able to while he wasn't on the machine. Once they start to take him off the ventilator, it will take a few days as they want to be sure that he will be able to breath on his own without complications. All told, it looks like Jerry may be on the ventilaor for about 5 days (if things go well).
He is now re-connected to nutrients as well.
Jerry is aware of the ventilaor and does not like having it (would you?) he has abeen trying to remove it from his mouth a few times. As long as there are 2 people back there, the nurses will not have to strap him down to prevent him from pulling the tube out of his mouth. I think we have the covered with as many of us as their are!
After we received this news, we were all extremely relieved while at the same time a bit skeptical. Can it be real? Is this really a shift in his prognosis? it sure seems that way... what a ride!
On a side note, we were all so excited to have this good news and start planning "time away in a real bed and showers" that we came up with a plan of shifts to keep at least 2 people here at all times in with Jerry. Well, that took a little time and became a bit of a show (who knew planning 3 hours shifts for the next 24 hours would be so difficult?), but was nothing compared to the sideshow that was going on around this: the great pillow debacle of 2009. Determing what stuff to leave in the Camp Jerry waiting room and what to take home, became a bit of a struggle and a comedy of errors. (You really had to be there to enjoy the humor, so just take our word on it).
So we shall see how the next few days and weeks pan out, but we are definitely in the zone for improvement now. Next stop: CHEMO in 2 weeks.... that is our goal today.
The Day Thus Far....
This morning the doctors have come in and things are about the same as they were yesterday. They ran an X-ray this morning to check out his lungs, they are also going to run a few additional tests: a CT scan.
They have connected Jerry back to a feeding tube as well.
Because of the fluid in his lungs, they will be connecting him to a breathing tube in order to run a few additional tests on him today. If Jerry is responding to the treatments/tests today, and how the results come back, they may keep him on the breathing machine.
He is resting most of the time now, and we are trying to limit visits with him to 10 min or so in order to not tire him out. there has been an outpouring of love and support for Jerry and our family and we truly appreciate it, more than everyone knows.
We still remain in our Camp Jerry waiting room in the hospital, so please check in with us when you get here, so we don't have too many visitors in his room at once.
They have connected Jerry back to a feeding tube as well.
Because of the fluid in his lungs, they will be connecting him to a breathing tube in order to run a few additional tests on him today. If Jerry is responding to the treatments/tests today, and how the results come back, they may keep him on the breathing machine.
He is resting most of the time now, and we are trying to limit visits with him to 10 min or so in order to not tire him out. there has been an outpouring of love and support for Jerry and our family and we truly appreciate it, more than everyone knows.
We still remain in our Camp Jerry waiting room in the hospital, so please check in with us when you get here, so we don't have too many visitors in his room at once.
Monday, January 12, 2009
Hanging In
The day is waning and Jerry is still holding on.
He has had a good day with his vitals and was put on meds to help maintain his blood pressure levels. He is no longer using the pressure mask for oxygen instead moving back to the oxygen hose into his nose. He actually seems to be breathing easier this way.
At our request, they did draw some blood late this morning to let us know how everything stand.s As suspected, his liver is no longer processing anything; his kidneys are failing and his blood pressure is dropping.
Jerry is not speaking too much today. It seems to zap him of energy and strength and we've decided to let him do as little as possible.
We have spoken to a few people here in the Palliable Care unit to help everyone cope and (eventually) move forward. The kids are dealing as well as can be expected, the adults are doing exactly like you think they would be doing.
It has been a long day, and the evening hours will be equally as long and harrowing.
He has had a good day with his vitals and was put on meds to help maintain his blood pressure levels. He is no longer using the pressure mask for oxygen instead moving back to the oxygen hose into his nose. He actually seems to be breathing easier this way.
At our request, they did draw some blood late this morning to let us know how everything stand.s As suspected, his liver is no longer processing anything; his kidneys are failing and his blood pressure is dropping.
Jerry is not speaking too much today. It seems to zap him of energy and strength and we've decided to let him do as little as possible.
We have spoken to a few people here in the Palliable Care unit to help everyone cope and (eventually) move forward. The kids are dealing as well as can be expected, the adults are doing exactly like you think they would be doing.
It has been a long day, and the evening hours will be equally as long and harrowing.
A Matter of Time
The clock is winding down and the inevitable is upon us.
Jerry is done fighting the good fight and is now remaining with us in comfort for his last amount of time. How long that will be is now up to him.
Mom, dad, sisters, nieces and nephews; cousins and dearest long time family friends are with him at the moment. Those that were here and couldn't remain for various reasons are here in spirit and are being kept updated regularly.
The "old neighborhood" came en masse last night and visited as well - sharing storeis of Ally McBeal night and other fond memories from back in the day.
We managed to have a "slumber party" if you will with about 20 people here all night in the waiting room. We have shared some memorable stories and antics of Jerry while also brinigng a lively decibel level to the ICU halls at 2:00 am.
Jerry rested comfortably last night and his vital stats have remained unchanged. His blood pressure is dropping, but his oxygen and heart rate are still very good. He has agreed to put the oxygen pressure mask on to help him breath, but at this point, other than the pain meds - that is the only assistance he is receiving medically.
It seems he is no longer quite lucid (although, it is 8am so he could have been out of it due to sleep). Not even Aunt Barb singing "You Sexy Thing" seemed to register with him.
He is back to facing outside and the cityscape of Kansas City for his last views, along with various family picutres and notes on the wall for him.
We will all remain by his side until such time that he decides to move on to his next step - hoping that is a long time coming.
Jerry is done fighting the good fight and is now remaining with us in comfort for his last amount of time. How long that will be is now up to him.
Mom, dad, sisters, nieces and nephews; cousins and dearest long time family friends are with him at the moment. Those that were here and couldn't remain for various reasons are here in spirit and are being kept updated regularly.
The "old neighborhood" came en masse last night and visited as well - sharing storeis of Ally McBeal night and other fond memories from back in the day.
We managed to have a "slumber party" if you will with about 20 people here all night in the waiting room. We have shared some memorable stories and antics of Jerry while also brinigng a lively decibel level to the ICU halls at 2:00 am.
Jerry rested comfortably last night and his vital stats have remained unchanged. His blood pressure is dropping, but his oxygen and heart rate are still very good. He has agreed to put the oxygen pressure mask on to help him breath, but at this point, other than the pain meds - that is the only assistance he is receiving medically.
It seems he is no longer quite lucid (although, it is 8am so he could have been out of it due to sleep). Not even Aunt Barb singing "You Sexy Thing" seemed to register with him.
He is back to facing outside and the cityscape of Kansas City for his last views, along with various family picutres and notes on the wall for him.
We will all remain by his side until such time that he decides to move on to his next step - hoping that is a long time coming.
Sunday, January 11, 2009
A Moment of Peace
Jerry has decided to stop receiving medicines and fluids as well as accepting the no-go on the Chemo and Radiation. He is however, still taking meds to alleviate any pain he is in.
He is resting fairly comfortably and family and close friends have been by his side all day. He no longer has the oxygen pressure mask or tubes on him constantly- he has instead chosen to take it off and talk with people when he can. He does have the small tube in his nose so he is still receiving oxygen as needed.
The hospital has stopped giving him meds (per his request) and are still slightly monitoring him. He has declared his request to live out the remainder of his days in comfort and not have all the drugs and machines hooked up to him. It has been hard to hear, but we are respecting his wishes and hoping for the best. His vitals this evening were very good - his breathing seems to actually have improved some from earlier in the day.
We have been visiting him individually for about 10 minutes at a time so as not to overwhelm him, or tire him out.
We do not have any sort of time frame for Jerry... we have been told it could be hours, days or even a week. A Priest came in to visit with him earlier this evening to help him be at peace.
Jerry seems at peace for the first time in a long time and he does not look in too much pain.
He is resting fairly comfortably and family and close friends have been by his side all day. He no longer has the oxygen pressure mask or tubes on him constantly- he has instead chosen to take it off and talk with people when he can. He does have the small tube in his nose so he is still receiving oxygen as needed.
The hospital has stopped giving him meds (per his request) and are still slightly monitoring him. He has declared his request to live out the remainder of his days in comfort and not have all the drugs and machines hooked up to him. It has been hard to hear, but we are respecting his wishes and hoping for the best. His vitals this evening were very good - his breathing seems to actually have improved some from earlier in the day.
We have been visiting him individually for about 10 minutes at a time so as not to overwhelm him, or tire him out.
We do not have any sort of time frame for Jerry... we have been told it could be hours, days or even a week. A Priest came in to visit with him earlier this evening to help him be at peace.
Jerry seems at peace for the first time in a long time and he does not look in too much pain.
I Don't Know What To Say....
Truly, I don't... this has been an up and down weekend and the hits just keep on coming.
The doctors just told us that Jerry is NOT getting any better and that in fact, his kidneys have all but stopped functioning. They could put him on dialysis, but they don't think in the long run it will be worth it.
His breathing has gotten worse and they have moved him from a standard mask to a "pressure mask" to help him breathe, however, it still isn't helping like they want it to. They are talking about putting him on a respirator, however, he has told our parents that he wants quality of life ..so that is probaby not an option.
We are in the throes of making some extremely tough decisions right now as the worst that we feared seems to have come to pass.
Decisions will be made in the next 24 hours that will affect all our lives forever. We are still praying for a miracle... but are having to face the harsh light of reality at the moment.
The doctors just told us that Jerry is NOT getting any better and that in fact, his kidneys have all but stopped functioning. They could put him on dialysis, but they don't think in the long run it will be worth it.
His breathing has gotten worse and they have moved him from a standard mask to a "pressure mask" to help him breathe, however, it still isn't helping like they want it to. They are talking about putting him on a respirator, however, he has told our parents that he wants quality of life ..so that is probaby not an option.
We are in the throes of making some extremely tough decisions right now as the worst that we feared seems to have come to pass.
Decisions will be made in the next 24 hours that will affect all our lives forever. We are still praying for a miracle... but are having to face the harsh light of reality at the moment.
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