As everyone may have figured out, things with Jerry are not progressing so great - they are stable, but not really progressing as well as we might like. He has definite good days and bad days, and lately more on the bad day side.
As of this morning, his white count is back to normal. His hemoglobin is great and they haven't had to give him blood in awhile. They are doing the bone marrow biopsy tomorrow, and may have to do a bone marrow tap as well.
Mom has thought that a group prayer might be a nice thing to do, so I'd like to ask everyone that happens to check the blog today, if you are so inclined to prayer or reflections - please say a quiet pray or thought tonight (Sunday) at 8:00 pm CST. Also, again on Monday morning at 10:00 am CST as that's about the time they will be doing the bone marrow pull on him.
Here is a prayer to the Patron Saint of Cancer, St. Peregrine:
Oh great Saint Peregine, you who have been called "The Mighty" and "The Wonder Worker" because of the numerous miracles which you have obtained from God for those who have have recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you. Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.
Thank you to everyone and we'll continue to keep you posted.
Sunday, January 25, 2009
Saturday, January 24, 2009
A Few Days of Highs and Lows
The past few days have shown us the highs and lows with Jerry and definitely put us all on edge with everything - the good and the bad.
Jerry has been very alert this past week and it's nice to see him follow nurses and visitors around the room, and responding via hand squeezes, eyebrow raising and pointed stares. He definitely wants the respirator tube removed from his throat and we had a few incidents where we thought he might pull the tube out on his own (most definitely NOT a good thing).
They pumped up the fluids they were pulling from him to 200 ml/hr, however, that didn't last very long as his blood pressure dropped extremely low... into the 40's and they almost had to bring in the crash cart for him - you've never seen so many nurses and doctors come running! After that incident, they put him back to 50 ml/hr and it took over 24 hours for his blood pressure to regulate. They began pulling out 100 ml/hr last night; as of this morning, they are now pulling 150 ml/hr and have put him on blood pressure meds in order to maintain a good blood pressure level. He is still really puffy from all the fluids in him, and will remain so until they can begin pullng much more fluids from him - a task they can't or won't do as his bp remains so low.
His color has been that of watered-down pea soup off and on for the past few days. His bellyrubn (which should be around 1-2) was at 20 on Thursday. The rest of the markers they test for on his liver/cancer were all good - just the bellyrubn was off. This is what also causes his color to be off and make him look jaundiced. They thought there might be a blockage in the liver that was causing this number to be high. If so, they wanted to try and do a shunt down his throat into his stomach/liver to see if there was blockage and or drain the area if needed. Last night, we were told they can not do this procedure due to how cramped up his organs are inside.. the area that SHOULD be clear and allow them acccess is shoved up into his diaphram and stomach prohibiting them from doing this.
They ran a CT scan on him Thursday to check out how things were going in him with the Cancer and if the chemo had any effect and to check for any blockage in his liver and see what next steps would be. The scan came back mixed - the cancer/tumor hasn't grown; yet hasn't shrunk. They want to do a bone scan on him on Monday in order to see if the Cancer has spread to his bones or not.... that answer will hold a lot of power over next steps in Jerry's care.
The doctors have pumped up the support for him on the respirator which means that now, the machine is doing a good portion of the breathing for Jerry. This is most assuredely not a good thing and we are constantly trying to wean him off so that we can remove the tube from him ASAP. He has been on full support on the machine for 3 days now... the longer he is at this level, the lower the odds of getting him off soon are.
To say that Jerry is improving is not right; to say that he is deteriorating isn't either. He is having good days and bad days; good moments and bad moments ... on the whole, the bad moments seem to be taking over right now, but we are still in this fight for him and he is holding on strong.
This morning, one of the ICU doctors came in and spoke to us about additional options for today. They are for sure doing the bone scan to see if the Cancer is indeed in his bones or not. If it IS, they will stop doing Chemo on him as once Cancer is in the bones, nothing will cure him (at least that is how we understood what he told us). if it ISN'T in his bones, they want to remove him from the respirator immediately, put a small "trach" hole in his throat. This will allow them to pump more meds into him if needed and will also allow Jerry to begin the recuperation process from having the ventilator on him.
Monday will be a fraught filled day while the bone scan occurs and until the results come back to us. For sure, it will be a day of decisions and may choose the path that Jerry will take.
Once again, we have a house full of family down to visit Jerry and to be together as a unit. The support from family and friends for Jerry still continues to flourish...a true testament to Jerry's love and friendship that he has spread throughout.
Jerry has been very alert this past week and it's nice to see him follow nurses and visitors around the room, and responding via hand squeezes, eyebrow raising and pointed stares. He definitely wants the respirator tube removed from his throat and we had a few incidents where we thought he might pull the tube out on his own (most definitely NOT a good thing).
They pumped up the fluids they were pulling from him to 200 ml/hr, however, that didn't last very long as his blood pressure dropped extremely low... into the 40's and they almost had to bring in the crash cart for him - you've never seen so many nurses and doctors come running! After that incident, they put him back to 50 ml/hr and it took over 24 hours for his blood pressure to regulate. They began pulling out 100 ml/hr last night; as of this morning, they are now pulling 150 ml/hr and have put him on blood pressure meds in order to maintain a good blood pressure level. He is still really puffy from all the fluids in him, and will remain so until they can begin pullng much more fluids from him - a task they can't or won't do as his bp remains so low.
His color has been that of watered-down pea soup off and on for the past few days. His bellyrubn (which should be around 1-2) was at 20 on Thursday. The rest of the markers they test for on his liver/cancer were all good - just the bellyrubn was off. This is what also causes his color to be off and make him look jaundiced. They thought there might be a blockage in the liver that was causing this number to be high. If so, they wanted to try and do a shunt down his throat into his stomach/liver to see if there was blockage and or drain the area if needed. Last night, we were told they can not do this procedure due to how cramped up his organs are inside.. the area that SHOULD be clear and allow them acccess is shoved up into his diaphram and stomach prohibiting them from doing this.
They ran a CT scan on him Thursday to check out how things were going in him with the Cancer and if the chemo had any effect and to check for any blockage in his liver and see what next steps would be. The scan came back mixed - the cancer/tumor hasn't grown; yet hasn't shrunk. They want to do a bone scan on him on Monday in order to see if the Cancer has spread to his bones or not.... that answer will hold a lot of power over next steps in Jerry's care.
The doctors have pumped up the support for him on the respirator which means that now, the machine is doing a good portion of the breathing for Jerry. This is most assuredely not a good thing and we are constantly trying to wean him off so that we can remove the tube from him ASAP. He has been on full support on the machine for 3 days now... the longer he is at this level, the lower the odds of getting him off soon are.
To say that Jerry is improving is not right; to say that he is deteriorating isn't either. He is having good days and bad days; good moments and bad moments ... on the whole, the bad moments seem to be taking over right now, but we are still in this fight for him and he is holding on strong.
This morning, one of the ICU doctors came in and spoke to us about additional options for today. They are for sure doing the bone scan to see if the Cancer is indeed in his bones or not. If it IS, they will stop doing Chemo on him as once Cancer is in the bones, nothing will cure him (at least that is how we understood what he told us). if it ISN'T in his bones, they want to remove him from the respirator immediately, put a small "trach" hole in his throat. This will allow them to pump more meds into him if needed and will also allow Jerry to begin the recuperation process from having the ventilator on him.
Monday will be a fraught filled day while the bone scan occurs and until the results come back to us. For sure, it will be a day of decisions and may choose the path that Jerry will take.
Once again, we have a house full of family down to visit Jerry and to be together as a unit. The support from family and friends for Jerry still continues to flourish...a true testament to Jerry's love and friendship that he has spread throughout.
Thursday, January 22, 2009
As The Week Wears On
Well, the week is almost over and Jerry has stayed pretty much the same this week.
He has managed to maintain his blood pressure consistently over the past 3-4 days without being on the blood pressure medicines - a feat we are very glad to have hit. The dialysis is still working fairly smoothly with the machine pulling off 100 ml/hour of excess fluid in him.
Wednesday was a good/bad day. Jerry was very alert and aware of everyone in the room- and he let you know when he wanted you! The bad part of Wednesday was that his color wasn't the best - he was really yellow and hands/feet were extremely puffy.
Today he is alert once again and (to my eyes) his hands do not look as puffy. His feet are still very puffy, but he had a lot of excess fluids in him, so it will take time. The hope is to keep his blood pressure consistent over a period of time and then they can pull more fluids from him to help reduce the puffiness that has become Jerry. He would hate me saying it, but his feet are in the running (haha) to compete with the Michelin Man or the Stay Puft Marshmallow man. Eeks.. might have gotten myself in trouble with THAT one, they are puffy but not hideous .. and I hope people realize this as an exaggaration to a point.
One not so great thing this morning is that they have him on the respirator and it's currently breathing for him. The past 4-5 days (maybe longer), Jerry has been doing all the work himself. THey turned him up on it last night (late) and he hasn't been able to tolerate breahing wihtou the machine.
Our fingers are crossed that the additional fluids they are pulling off him as well as him being able to keep his blood pressure up will work in his favor so we can get the tube off of him ASAP.
The Oncologist visited this morning and said that all of his numbers look good (3 of 4 good) except his BellyRibbon number was very high (he's at a 20, should be at a 1-2). This is what is making him so yellow and causing back up of fluids and such. She is recommending an additional CT scan and ultrasound of his liver to see if the Chemo has helped any/none and to see if there is any blockage or such in the liver.
In the meantime, we continue to screen, grill and motivate the doctors and nurses around here to do the best for our Jer and help us get him better.
He has managed to maintain his blood pressure consistently over the past 3-4 days without being on the blood pressure medicines - a feat we are very glad to have hit. The dialysis is still working fairly smoothly with the machine pulling off 100 ml/hour of excess fluid in him.
Wednesday was a good/bad day. Jerry was very alert and aware of everyone in the room- and he let you know when he wanted you! The bad part of Wednesday was that his color wasn't the best - he was really yellow and hands/feet were extremely puffy.
Today he is alert once again and (to my eyes) his hands do not look as puffy. His feet are still very puffy, but he had a lot of excess fluids in him, so it will take time. The hope is to keep his blood pressure consistent over a period of time and then they can pull more fluids from him to help reduce the puffiness that has become Jerry. He would hate me saying it, but his feet are in the running (haha) to compete with the Michelin Man or the Stay Puft Marshmallow man. Eeks.. might have gotten myself in trouble with THAT one, they are puffy but not hideous .. and I hope people realize this as an exaggaration to a point.
One not so great thing this morning is that they have him on the respirator and it's currently breathing for him. The past 4-5 days (maybe longer), Jerry has been doing all the work himself. THey turned him up on it last night (late) and he hasn't been able to tolerate breahing wihtou the machine.
Our fingers are crossed that the additional fluids they are pulling off him as well as him being able to keep his blood pressure up will work in his favor so we can get the tube off of him ASAP.
The Oncologist visited this morning and said that all of his numbers look good (3 of 4 good) except his BellyRibbon number was very high (he's at a 20, should be at a 1-2). This is what is making him so yellow and causing back up of fluids and such. She is recommending an additional CT scan and ultrasound of his liver to see if the Chemo has helped any/none and to see if there is any blockage or such in the liver.
In the meantime, we continue to screen, grill and motivate the doctors and nurses around here to do the best for our Jer and help us get him better.
Monday, January 19, 2009
Another Week Begins
Today Jerry is resting very peacefully. His past few days have been pretty hard on him in that he didn't sleep much; was very restless and antsy. The nurses have sedated him a bit more today in order to keep him from thrashing around and also to keep his anxiety at bay. As he awakens/becomes alert, he still tries to wrench the tube from his throat..something we definitely do not want.
We are under "quiet" orders today from Nurse Shannon. So, while there will be someone with him all day, we won't be chatting with him as much instead, simply holding his hand and being there for him. Her goal is to let him rest today as she feels the last 24 hours or so have been very stimulating and hard on him with family in/out, chatting with him and of course, the regular check up of "Jerry, can you hear me? Squeeze my hand, or raise your eyebrows" was somewhat draining on him.
His blood pressure and heart rate are within nominal ranges today. They have turned the pressure support on the ventilator back up due to the fatigue they feel he has been thru the last few days. Also, they have put him back on one of the blood pressure meds. This isn't too surprising as when they sedate him/he's asleep, his bp drops.. so they are doing this to simply regulate him - nothing to be alarmed about.
His swelling has gone down considerably.. and they are now pulling about 60-75 ml/hour from him (the level changes depending on his BP levels). The kidney doctor thinks his swelling hasn't gone down, as he isn't pulling the amount of fluid from him that he would like.. but again, nothing alarming. He can't pull the amount he wants until his blood pressure stabilizes.
We are constantly in a tug of war between the blood pressure and kidneys -and every now and then something else decides to jump in and gives us a good tug.... but we are flighting steadfastly and will win out in the end.
We are under "quiet" orders today from Nurse Shannon. So, while there will be someone with him all day, we won't be chatting with him as much instead, simply holding his hand and being there for him. Her goal is to let him rest today as she feels the last 24 hours or so have been very stimulating and hard on him with family in/out, chatting with him and of course, the regular check up of "Jerry, can you hear me? Squeeze my hand, or raise your eyebrows" was somewhat draining on him.
His blood pressure and heart rate are within nominal ranges today. They have turned the pressure support on the ventilator back up due to the fatigue they feel he has been thru the last few days. Also, they have put him back on one of the blood pressure meds. This isn't too surprising as when they sedate him/he's asleep, his bp drops.. so they are doing this to simply regulate him - nothing to be alarmed about.
His swelling has gone down considerably.. and they are now pulling about 60-75 ml/hour from him (the level changes depending on his BP levels). The kidney doctor thinks his swelling hasn't gone down, as he isn't pulling the amount of fluid from him that he would like.. but again, nothing alarming. He can't pull the amount he wants until his blood pressure stabilizes.
We are constantly in a tug of war between the blood pressure and kidneys -and every now and then something else decides to jump in and gives us a good tug.... but we are flighting steadfastly and will win out in the end.
Saturday, January 17, 2009
A Saturday update
Today it appeared we were going to make some major progress, but it turned out that we didn't make the steps we thought we would.
Jerry had a long night last night- he didn't sleep at all (and I mean not even napping too much). He was extremely alert and responsive to everyone that was in the room visiting him. We brought one of the kids Alphabet game boards as he was really trying to communicate with everyone, and with the tube in, he wasn't able to. The board worked fairly well, and we are still working on a few other ideas to help him communicate with us.
His blood pressure was awesome all night, and the nurses actually took him off all the blood pressure medicine.. so he is now back to regulating his own BP. Hopefully, it will stay at a good level for the future.
He is now breathing on his own and the pressure support on the ventilator is at the lowest possible level they can use ... this is all great as it means that he is breathing virtually on his own. He is very aware of the tube and several times during the night he has tried to pull the tube out of his throat.
They have been pulling fluids off of him since yesterday and you can see the change in him. Yes, he is still puffy, but he is no where near the level of puff that he was last night. They are going to continue to pull fluids from him and they are fairly optimistic at how this process is going.
This morning, it looked like we would have a breakthrough, however, after the doctor's consulted- things stayed the same. Because his levels and such were so good this morning, Nurse Jamie (yeah! she's back!) let the docs know and said that she wanted to see if they would take the tube out and get him off the ventilator. The doctors took over an hour to consult and finally decided to keep him on the ventilator for another 24 hours. They will re-evaluate his status tomorrow again and see if things have improved. Their reasoning for not removing him off the machines is to keep pulling fluids off of him. They don't seem to see any issues with his breathing, blood pressure or other vitals that would prevent them from removing him from the machine.. it all seems to revolve around them pulling fluids off of him to get him better. So, we hope tomorrow will bring more fluids out of Jerry and enable the docs to remove him from the ventilator. I know that he will be extremely happy as will the rest of the family and the great nurses that have bonded with him.
Jerry had a long night last night- he didn't sleep at all (and I mean not even napping too much). He was extremely alert and responsive to everyone that was in the room visiting him. We brought one of the kids Alphabet game boards as he was really trying to communicate with everyone, and with the tube in, he wasn't able to. The board worked fairly well, and we are still working on a few other ideas to help him communicate with us.
His blood pressure was awesome all night, and the nurses actually took him off all the blood pressure medicine.. so he is now back to regulating his own BP. Hopefully, it will stay at a good level for the future.
He is now breathing on his own and the pressure support on the ventilator is at the lowest possible level they can use ... this is all great as it means that he is breathing virtually on his own. He is very aware of the tube and several times during the night he has tried to pull the tube out of his throat.
They have been pulling fluids off of him since yesterday and you can see the change in him. Yes, he is still puffy, but he is no where near the level of puff that he was last night. They are going to continue to pull fluids from him and they are fairly optimistic at how this process is going.
This morning, it looked like we would have a breakthrough, however, after the doctor's consulted- things stayed the same. Because his levels and such were so good this morning, Nurse Jamie (yeah! she's back!) let the docs know and said that she wanted to see if they would take the tube out and get him off the ventilator. The doctors took over an hour to consult and finally decided to keep him on the ventilator for another 24 hours. They will re-evaluate his status tomorrow again and see if things have improved. Their reasoning for not removing him off the machines is to keep pulling fluids off of him. They don't seem to see any issues with his breathing, blood pressure or other vitals that would prevent them from removing him from the machine.. it all seems to revolve around them pulling fluids off of him to get him better. So, we hope tomorrow will bring more fluids out of Jerry and enable the docs to remove him from the ventilator. I know that he will be extremely happy as will the rest of the family and the great nurses that have bonded with him.
Friday, January 16, 2009
What day is it? Can't recall.. but things are progressing...
Today has been a fairly good for Jerry. He's been very alert and responsive to everyone all day today. He really notices who is in the room and follows what you say and do.
His blood pressure is up now, but they are still medicating him for it (haven't given him any MORE of the BP meds, but are still maintaining the level they have him on). This afternoon was a banner afternoon for Jer - they started to pull fluids from him! We are all very excited in this small, but important step for him. He is using the ventilator less and less these days- not even using it for breathing as he is handling that on his own. He is (for the most part) on the ventilator for "pressure support" for his lungs and they have lowered that to 5/5 (he was at 15/5). His color remains good and the rest of his vitals are nice and strong.
Our nurse this evening is lovely (said dripping with sarcasm). She has a very strong Island accent and does not really speak to you unless spoken to, and even then, answers you with as little informaiton as she has to. She is not our favorite nurse here by far....
His blood pressure is up now, but they are still medicating him for it (haven't given him any MORE of the BP meds, but are still maintaining the level they have him on). This afternoon was a banner afternoon for Jer - they started to pull fluids from him! We are all very excited in this small, but important step for him. He is using the ventilator less and less these days- not even using it for breathing as he is handling that on his own. He is (for the most part) on the ventilator for "pressure support" for his lungs and they have lowered that to 5/5 (he was at 15/5). His color remains good and the rest of his vitals are nice and strong.
Our nurse this evening is lovely (said dripping with sarcasm). She has a very strong Island accent and does not really speak to you unless spoken to, and even then, answers you with as little informaiton as she has to. She is not our favorite nurse here by far....
Thursday, January 15, 2009
Information on Giving Blood
Thank you to all of you that have offered to donate blood for Jerry in case it's needed. As he is A Positive - those that are also A Positive as well as O Positive (Universal Donors) can give blood for Jer.
We are in the process of setting this up with the Community Blood Bank so that you can go in and Direct Donate for him. It should be all set up by later this afternoon/end of day for anyone to donate after today.
Here is information on local Kansas City Community Blood Banks:
Website information: www.safealilfenow.org
Location/hours information: http://www.savealifenow.org/services/hours-locations.php
For those of you that haven't given blood before, you will have to present a photo id and they will do a small physical on you to ensure you are healthy enough to give blood. Once you pass that, they will hook you up and the process should take about one hour.
When you arrive, please let them know that you are there to be a Direct Donor. Those of you that have commented on the blog that you will donate - your names will be on the list. For those of you that haven't and want to donate, please let me know so that I can add you to the list as well. It's my understanding they will not accept unless they have your name on the list(due to "patient/family wishes and only accepting those that they know I guess). I am trying to verify all this information this morning.
Thank you for all your precious time and blood! Let's hope we won't end up needing it and that the Blood Bank can use it instead!!
We are in the process of setting this up with the Community Blood Bank so that you can go in and Direct Donate for him. It should be all set up by later this afternoon/end of day for anyone to donate after today.
Here is information on local Kansas City Community Blood Banks:
Website information: www.safealilfenow.org
Location/hours information: http://www.savealifenow.org/services/hours-locations.php
For those of you that haven't given blood before, you will have to present a photo id and they will do a small physical on you to ensure you are healthy enough to give blood. Once you pass that, they will hook you up and the process should take about one hour.
When you arrive, please let them know that you are there to be a Direct Donor. Those of you that have commented on the blog that you will donate - your names will be on the list. For those of you that haven't and want to donate, please let me know so that I can add you to the list as well. It's my understanding they will not accept unless they have your name on the list(due to "patient/family wishes and only accepting those that they know I guess). I am trying to verify all this information this morning.
Thank you for all your precious time and blood! Let's hope we won't end up needing it and that the Blood Bank can use it instead!!
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