Re: Update from Kathy re: Tom - WEDNESDAY, JANUARY 07, 2009 12:58 PM, CST

[Guest guest]

Wow, what a three-day period we have had. I'm sorry we haven't posted, but we haven't been anywhere with an internet connection.When Tom was discharged on Friday, town had him set up on TPN nutrition given through a PICC line into a major vein around his heart. He has had nothing to eat or drink by mouth (except his medication) since Christmas Eve. The TPN provided him 2500 ml of fluid everyday, but his drains were draining off about 1200 ml of that fluid daily. He had become severely dehydrated, and when we found that his blood pressure had dropped to 83/53 on Sunday we were advised to take him into the emergency room at Reston Hospital for IV fluids. We stayed in the ER at Reston until about 9 PM Sunday night.

Since the time he had been home on TPN he had been suffering from pain in his left arm. We thought it was just something about the way he was lying in the bed...a pinched nerve or something. By early Monday morning the pain was in his chest radiating into his left arm, and it was excruciating. It was the worst pain I've ever seen anyone experience. We called town, and they told us to call 911 and have him taken by ambulance to Reston Hospital.

All the heart-related tests done at Reston showed no cardiac problems. They continued to hydrate Tom with IV fluids, and attempted to arrange a move to town Hospital. They worked on these arrangements all day, but the transplant unit at town was maxed out (they did 7 transplants from Monday through Tuesday of this week). After 18 hours in the Reston ER they moved Tom to a regular room so he could get a little sleep while he waited for town to find space for him.

Overnight at Reston on Monday night Tom's chest and arm pain again became excruciating. The doctor ordered him to be taken off of the TPN infusion, and the pain immediately stopped! He was kept off the TPN last night, and the pain never returned. Reston found that there is a clot in the vein around his PICC line, so it can no longer be used. The current theory to explain the chest/arm pain is that the TPN solution is known to be very irritating to blood vessels (that's why it is put into a major vein around the heart rather than a smaller peripheral vein), and the fact that Tom's vein size was reduced by the clot led to a more concentrated amount of the TPN solution irritating his blood vessels. Makes sense to me. They have put Tom back on an anticoagulant medication.

The doctors are letting him try solid food again. He is supposed to be on a severe fat limitation (although the lunch they just gave him looked plenty fatty to me!) to try and keep his chyle (fat) leaks from recurring. Unfortunately chyle leaks can take months to resolve themselves, and the liver can't fully heal while the chyle is leaking. These leaks also disrupt the body's fluid cycle which exacerbates dehydration. If the solid food diet results in the chyle leakage beginning again, Tom very well may be put back on TPN (at a lower, less irritating flow rate) for quite awhile. Please pray that this doesn't happen. It's amazing what being able to eat solid food does for a patient's attitude.

Tom and I had both been feeling abandoned by the transplant doctors at town, but today we got an opportunity to talk with them for a good while and get answers to some of our questions. We feel like he is now going to get some attention. Hopefully he won't have to stay in the hospital as long this time, but I'm sure they'll keep him through the end of the week at least.

The good news is that the liver continues to function well. By now it should have substantially regrown, although it will take awhile for complete functioning to return. The condition of the liver is really the most important thing in this whole process, and that part seems to be great.

Please keep us all in your prayers. I'm functioning on about 4 hours of sleep for each of the last 4 nights, and I'm pretty tired. I think I'll plan to go home pretty soon and get some sleep.

Kathy

To send a message to Tom, Kathy and family goto;

http://www.caringbridge.org/visit/thomasbutler

[Guest guest]

Wow Kathy,

What a mess! Prayers are headed your way and Tom's.

Anita

[Guest guest]

Kathy/Tom,

I’ve been following you and Tom closely and have left a few

messages on Caringbridge as well – but if you get around to reading here I

wanted to send you a note of encouragement here too. It’s easy for us to watch

from a distance and say “well, his liver is doing well and that is what is

important” because we aren’t there to see the discomfort and pain that Tom is

going through. But at the same time, I am very excited to hear that Tom’s

liver side of things is doing well. Now we just want the chyle leaks to head

SUPER FAST and then everything else should hopefully resolve on its’ own.

You are both in our prayers!

Rick

From:

[mailto: ] On Behalf

Of Ian Cribb

Sent: Wednesday, January 07, 2009 2:50 PM

To:

Subject: Re: Update from Kathy re: Tom - WEDNESDAY,

JANUARY 07, 2009 12:58 PM, CST

Wow, what a three-day period

we have had. I'm sorry we haven't posted, but we haven't been anywhere with an

internet connection.

When Tom was discharged on Friday, town had him set up on TPN nutrition

given through a PICC line into a major vein around his heart. He has had

nothing to eat or drink by mouth (except his medication) since Christmas Eve.

The TPN provided him 2500 ml of fluid everyday, but his drains were draining

off about 1200 ml of that fluid daily. He had become severely dehydrated, and

when we found that his blood pressure had dropped to 83/53 on Sunday we were

advised to take him into the emergency room at Reston Hospital for IV fluids.

We stayed in the ER at Reston until about 9 PM Sunday night.

Since the time he had been home on TPN he had been suffering from pain in his

left arm. We thought it was just something about the way he was lying in the

bed...a pinched nerve or something. By early Monday morning the pain was in his

chest radiating into his left arm, and it was excruciating. It was the worst

pain I've ever seen anyone experience. We called town, and they told us

to call 911 and have him taken by ambulance to Reston Hospital.

All the heart-related tests done at Reston showed no cardiac problems. They

continued to hydrate Tom with IV fluids, and attempted to arrange a move to

town Hospital. They worked on these arrangements all day, but the transplant

unit at town was maxed out (they did 7 transplants from Monday through

Tuesday of this week). After 18 hours in the Reston ER they moved Tom to a

regular room so he could get a little sleep while he waited for town to

find space for him.

Overnight at Reston on Monday night Tom's chest and arm pain again became

excruciating. The doctor ordered him to be taken off of the TPN infusion, and

the pain immediately stopped! He was kept off the TPN last night, and the pain

never returned. Reston found that there is a clot in the vein around his PICC

line, so it can no longer be used. The current theory to explain the chest/arm

pain is that the TPN solution is known to be very irritating to blood vessels

(that's why it is put into a major vein around the heart rather than a smaller

peripheral vein), and the fact that Tom's vein size was reduced by the clot led

to a more concentrated amount of the TPN solution irritating his blood vessels.

Makes sense to me. They have put Tom back on an anticoagulant medication.

The doctors are letting him try solid food again. He is supposed to be on a

severe fat limitation (although the lunch they just gave him looked plenty

fatty to me!) to try and keep his chyle (fat) leaks from recurring.

Unfortunately chyle leaks can take months to resolve themselves, and the liver

can't fully heal while the chyle is leaking. These leaks also disrupt the

body's fluid cycle which exacerbates dehydration. If the solid food diet

results in the chyle leakage beginning again, Tom very well may be put back on

TPN (at a lower, less irritating flow rate) for quite awhile. Please pray that

this doesn't happen. It's amazing what being able to eat solid food does for a

patient's attitude.

Tom and I had both been feeling abandoned by the transplant doctors at

town, but today we got an opportunity to talk with them for a good while

and get answers to some of our questions. We feel like he is now going to get

some attention. Hopefully he won't have to stay in the hospital as long this

time, but I'm sure they'll keep him through the end of the week at least.

The good news is that the liver continues to function well. By now it should

have substantially regrown, although it will take awhile for complete

functioning to return. The condition of the liver is really the most important

thing in this whole process, and that part seems to be great.

Please keep us all in your prayers. I'm functioning on about 4 hours of sleep

for each of the last 4 nights, and I'm pretty tired. I think I'll plan to go

home pretty soon and get some sleep.

Kathy

To send

a message to Tom, Kathy and family goto;

http://www.caringbridge.org/visit/thomasbutler

[Guest guest]

Kathy/Tom,

I’ve been following you and Tom closely and have left a few

messages on Caringbridge as well – but if you get around to reading here I

wanted to send you a note of encouragement here too. It’s easy for us to watch

from a distance and say “well, his liver is doing well and that is what is

important” because we aren’t there to see the discomfort and pain that Tom is

going through. But at the same time, I am very excited to hear that Tom’s

liver side of things is doing well. Now we just want the chyle leaks to head

SUPER FAST and then everything else should hopefully resolve on its’ own.

You are both in our prayers!

Rick

From:

[mailto: ] On Behalf

Of Ian Cribb

Sent: Wednesday, January 07, 2009 2:50 PM

To:

Subject: Re: Update from Kathy re: Tom - WEDNESDAY,

JANUARY 07, 2009 12:58 PM, CST

Wow, what a three-day period

we have had. I'm sorry we haven't posted, but we haven't been anywhere with an

internet connection.

When Tom was discharged on Friday, town had him set up on TPN nutrition

given through a PICC line into a major vein around his heart. He has had

nothing to eat or drink by mouth (except his medication) since Christmas Eve.

The TPN provided him 2500 ml of fluid everyday, but his drains were draining

off about 1200 ml of that fluid daily. He had become severely dehydrated, and

when we found that his blood pressure had dropped to 83/53 on Sunday we were

advised to take him into the emergency room at Reston Hospital for IV fluids.

We stayed in the ER at Reston until about 9 PM Sunday night.

Since the time he had been home on TPN he had been suffering from pain in his

left arm. We thought it was just something about the way he was lying in the

bed...a pinched nerve or something. By early Monday morning the pain was in his

chest radiating into his left arm, and it was excruciating. It was the worst

pain I've ever seen anyone experience. We called town, and they told us

to call 911 and have him taken by ambulance to Reston Hospital.

All the heart-related tests done at Reston showed no cardiac problems. They

continued to hydrate Tom with IV fluids, and attempted to arrange a move to

town Hospital. They worked on these arrangements all day, but the transplant

unit at town was maxed out (they did 7 transplants from Monday through

Tuesday of this week). After 18 hours in the Reston ER they moved Tom to a

regular room so he could get a little sleep while he waited for town to

find space for him.

Overnight at Reston on Monday night Tom's chest and arm pain again became

excruciating. The doctor ordered him to be taken off of the TPN infusion, and

the pain immediately stopped! He was kept off the TPN last night, and the pain

never returned. Reston found that there is a clot in the vein around his PICC

line, so it can no longer be used. The current theory to explain the chest/arm

pain is that the TPN solution is known to be very irritating to blood vessels

(that's why it is put into a major vein around the heart rather than a smaller

peripheral vein), and the fact that Tom's vein size was reduced by the clot led

to a more concentrated amount of the TPN solution irritating his blood vessels.

Makes sense to me. They have put Tom back on an anticoagulant medication.

The doctors are letting him try solid food again. He is supposed to be on a

severe fat limitation (although the lunch they just gave him looked plenty

fatty to me!) to try and keep his chyle (fat) leaks from recurring.

Unfortunately chyle leaks can take months to resolve themselves, and the liver

can't fully heal while the chyle is leaking. These leaks also disrupt the

body's fluid cycle which exacerbates dehydration. If the solid food diet

results in the chyle leakage beginning again, Tom very well may be put back on

TPN (at a lower, less irritating flow rate) for quite awhile. Please pray that

this doesn't happen. It's amazing what being able to eat solid food does for a

patient's attitude.

Tom and I had both been feeling abandoned by the transplant doctors at

town, but today we got an opportunity to talk with them for a good while

and get answers to some of our questions. We feel like he is now going to get

some attention. Hopefully he won't have to stay in the hospital as long this

time, but I'm sure they'll keep him through the end of the week at least.

The good news is that the liver continues to function well. By now it should

have substantially regrown, although it will take awhile for complete

functioning to return. The condition of the liver is really the most important

thing in this whole process, and that part seems to be great.

Please keep us all in your prayers. I'm functioning on about 4 hours of sleep

for each of the last 4 nights, and I'm pretty tired. I think I'll plan to go

home pretty soon and get some sleep.

Kathy

To send

a message to Tom, Kathy and family goto;

http://www.caringbridge.org/visit/thomasbutler