we are home! james has some pain today but we are otherwise good. still working hard to get the minimum daily protein for james. it is a real challenge. i am hoping to return to work this week if james continues to improve. today, i ask you to pray for my friend, joanna. she will be having surgery tomorrow. please pray her disease be removed without removing her chance to become a mommy. please keep justin and jo in your prayers this week. i hope jo's surgery is the last for a while...aunt donna, pawpaw, james and jo all since september! happy day my dears! amy
we are just waiting on the final report from the cultures pulled from the infection. that is our ticket out of here. everything else is fine. swelling is gone. appetite is slowly returning. little to no pain. once we have the report, they will use it to determine which oral antibiotic to use to fight the infection. going home today would be nice but we are not getting our hopes up until we actually see some discharge papers! enjoy the beautiful weekend my dears! amy
Things are improving one day at a time. The swelling in James legs has gone down some and his feet are slowly following suit. He is sleeping much better than he has in the past two weeks. He is slowly coming around with his appetite which is hard because he is supposed to intake 150 grams of protein and 100 ounces of fluids per day. Yikes! I know its a lot but its what has to be down to regenerate a healthy liver without causing harm to the kidneys! The specimen taken from the fluid collection showed a bacterial infection to which the doctors have responded by adding a second antibiotic twice a day. They are waiting on the final report to determine which antibiotic to send home with James. The fluid is still draining though not as rapidly as before, James has still lost 12 lbs in four days and that has made him feel much better! Stan and Granny's trip is drawing to an end. They will leave early Saturday morning. They have been by yesterday and are here now to see James. I really hate we were not home to make the most of their visit but I know the hospital has been the best place for James. Discharge tomorrow is not likely due to the pending report. We are looking at getting out of here Saturday or possibly even Sunday. Thanks for your continued support through prayer! Much love to all, Amy
When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.
And when this road gets too long
I'll be the rock you lean on
Just take my hand, together we can do it
I’m gonna love you through it.
There really isn't much to report today. All is well for now. James is still struggling to get back his appetite but the nutritionist gave me some new ideas for getting some extra protein to him. I took a break from the hospital this morning while Stan and Granny visited. It was nice to spend some time with my sister and her babies. There is still some swelling in James' legs and feet but he has lost 9lbs of fluid since Monday. Please continue to pray his body heals and recovers as needed and we can be on the right track out of here! Happy day to All! Amy
james' drain tube is in place and doing a great job. the tube pulled 850cc of fluid from his abdomen as soon as it was put in place! i am sure one of the docs will be by later today and i hope to find out more details about the drain...how long will he need it? will he go home with it? how do we care for it???? etc.
james is back in the room resting and i think....
.................................................................ok i am back. the doctor came in right in the middle of my post. and i got some answers.
the tube will stay in a couple of weeks.
yup, it will be coming home
the nurses will train me how to care for it.
staples will come out tomorrow as scheduled.
james will go home friday, best case scenario. they want to monitor the drain output and make sure james' appetite returns.
the liver has begun the regeneration process and we really need to pump the protein to james. if james isn't getting enough protein, the liver will start stealing muscle mass to rebuild itself which can lead to severe weakness and exhaustion and an even longer recovery. so we are going to do our best to avoid all that mess!
he should eat several small meals a day.
as we were told before, james will be run down and tired for the next six - eight weeks as the liver regenerates.
i think that's all for now. as i was saying before, james is resting and i think i will join him.
for my local readers, be safe out there. most of us are under a tornado watch.
later my lovelies!
Every one take a deep breath..............and let it out, ahhhhh, doesn't that feel good? I am calm, cool, and collected today! We finally know the source of all the problems. Only took four days but I won't harp on that. I am thankful we found the problem which will lead to the proper treatment and solution! The CT scan revealed a large collection of fluid at the surgical site. This fluid mass is occupying the empty space where the right lobe of the liver was before surgery. This collection of infection is to blame for the largely distended abdomen and pain/tightness felt in James' side. The fluid is compressing the (_insert big medical term here_) vein responsible for circulation to the lower extremities. This explains the horrible swelling in James' feet, ankles, and legs. As I type, James is having a procedure done to insert a drain tube. It is unclear how quickly this fluid will drain or if he will go home with the tube in place. It is my prayer that James will experience immediate relief from the pain and be able to clear this speed bump on the road to recovery! Make it a terrific Tuesday friends! Amy
For those that enjoy reading my sweet upbeat blog, this is not one of those posts. I have had it and have decided to share the frustration. You have been warned!
As you know, James was admitted on Friday after a follow up visit with his surgeon's PA. He was admitted for:
Lack of appetite
Lack of bowel movement
Shortness of breath
And so far this is what has been done to treat him:
Lack of appetite - NOTHING
Lack of bowel movement - over the counter laxatives and stool softeners
Shortness of breath - chest x ray, the same antibiotics he was getting at home
Slight fever - NOTHING
Anemia - Blood transfusion on Friday
So why are we in the hospital??? To add to it, the shortness of breath and lung problems have become very painful. What do we do for pain? Oh yes, narcotics! Narcotics that put you so far out of your mind sleep is impossible. If he is still hurting, do we further search for the source of pain? NO! What do we do? More narcotics! I am not a doctor and I don't play one on TV but it is my opinion that we should find and treat the problem. Not the symptoms. I am frustrated. I am sick of doctors saying one thing and doing another. Doc - "Well I think you should have a CT scan." Amy - "Hi nurse. Do we know when James might have his CT scan?" Nurse- "Oh the doctor didn't order one." Amy - "So he's not having one?" Nurse- "Well, I don't know but don't eat anything, just in case." Seriously. And how long is James not supposed to eat anything "just in case" they come get him for a scan the doctor didn't order? See why I am frustrated?
Another instance... Phlebotomist - "Mr. Abell, I am going to stick you for a blood draw. Ok?" Mrs. Abell - "Will you please use his port? His veins have just about had it." Phlebotomist - "No, I can't use his port. The nurse said to stick him, Mrs. Abell." Mrs. Abell - "Do not stick him. I will be right back." To the nurse: "Why does she have to stick him?" Lazy Nurse - "Oh he doesn't want to be stuck?" Mrs. Abell - "No. We had a surgical procedure to put in a port so he would not have to be stuck so often." Lazy Nurse- "Oh well a nurse has to do all blood draws from the port." Mrs. Abell - "He's in room P320 and I suggest you hook up to his port if you would like lab work."
Did she seriously question that he didn't want to be stuck? Really? Does anyone want to be stuck in the veins with a needle? He has had so many IVs and blood draws in the past ten days that his arms are black and blue with bruises. The crease in his arm at his elbow looks like a target and they are continually sticking a needle there. And you are going to send someone in to poke him one more time, when it can be avoided if you weren't so busy sitting at the nurse's station watching YouTube. Ugh. Everyone says. Go home and get some rest. Take some time for yourself. Take a deep breath and calm down. To that I say: No. If I am not here, I don't know what's going on and how to properly care for James. And more so than that, they don't know how to properly care for him. If I am not here, do you think some one is going to get him ice water every hour? No. Do you think someone is going to walk and talk with him? No. Is someone going to make him coffee at 3 AM? No. I am here as long as he is here but I am at a breaking point this morning. I have not slept in a bed for eleven nights. I have watched my husband suffer. I have seen people show up for a paycheck and nothing more. I am just so over it. The light we saw at the end of this tunnel seems to be so far away now. Amy
james is still in the hospital. he has a lot of swelling in his feet, ankles and legs that hasn't gone down with lasix so they will do some tests today to check for blood clots. he has the beginning stages of pneumonia on his right lung. it is very painful for him to take deep breaths. he is on antibiotics and regular breathing exercises to treat this. he has not run fever since friday and his appetite is slowly returning to normal.
he may go home tomorrow but we've heard that before so we are not getting our hopes up. we are ready to get off this roller coaster ride!
James is getting a unit of blood now. I expect to see one of the doctors tonight to give the results of the chest x ray. We have the preliminary report and it looks like he has pneumonia and/or pleurisy. Please pray for his lungs to recover so he can make a full recovery from this surgery. I will pass along info as it becomes available. Amy
At James' appointment this morning, it was decided he should be put back in the hospital. The pain seems to be unrelated to the surgery. Combine that with a slight fever, lack of appetite and bowel movements and you've landed yourself a hospital stay. They will be running some tests on James through out the day. He may come home tonight or stay a few days. We just don't know. Prayer needed, Amy
after lots of coughs, i went to the doctor yesterday to find out i have bronchitis. two shots and two prescriptions later, i am on the mend. stan and granny arrived this evening and i welcome the help they will provide. i will return to work on saturday and it is much easier to focus knowing stan is here with james.
james' days are up and down. it changes from one minute to the next. the pain seems to be a bit worse today. he is scheduled for blood work and a visit with the p.a. in the morning. he will go back next wednesday for the doc to remove his staples. pray the drive to houston will not be so rough on him.
many have asked so here it is...a little FAQ
Q: what will we learn from the surgery? did they do any tests on the tumor?
A: the tumor and lymph node were sent to pathology and we should have a full report by the time we see the surgeon next wednesday.
Q: how long is recovery?
A: james can not lift, push, or pull anything over five pounds for eight weeks. during that time, the liver will regenerate itself up to 90% of its normal size. we can expect james to be very run down and tired during this recovery time because his body is burning all the calories and protein he intakes to rebuild the liver.
Q: then what? what happens next?
A: james will be monitored during recovery for any indication that cancer may still be in his body. if there is something still there or the possibility, james will undergo a clean up chemo to makes sure everything is gone. he can not have any chemo until he is 100% recovered from surgery and released by the surgeon.
Q: when is a good time to visit?
A: probably another week or two. james still isn't sleeping much at night so he sleeps through out the day. and i know i am sick but we are trying to limit the chance of james catching anything. a cough or illness would send us in reverse on the road to recovery and i do not want that for him. his body has been through enough this past year without adding an annoying cough or cold.
Q: what can i do to help?
A: continue to pray for james daily. we know this works!
we are grateful for and love everyone this blog reaches. thank you so much for your support this past year! we are blessed by each of you!
james' at home recovery couldn't be better! we have been walking and continuing breathing exercises. james has done a great job staying ahead of his pain by taking pain meds on schedule. he was able to get some sleep last night but we are both still behind! i think i might be coming down with something so i have scheduled a doc's appt tomorrow. i have some chest congestion and a cough. i hope the doc can give me something so i don't pass this along to james. we are looking forward to seeing james' dad and granny this week! they will be staying with us for nine days to help with james so i can return to work. we can't wait to see them!!! amy