Waiting for Discharge

Ericalynn

Update on John
Well things have progressed very fast (since swallow study) on Wednesday. John had the test around 10AM & we thought he had a small leak (per PA in Radiology) Surgeon came to room around 5 PM told us he saw Images and there was not a leak and he would have nurse pull NG tube and start with liquids, if liquids went down OK he would have soft food Thursday morning. Well that is when things started to get annoying for John. Surgeon’s 3rd year resident was out of town (interviewing for fellowship) so I guess the 1st year resident (maybe 2nd ) did not write order for NG tube to be removed, nurse had to call to get order written. All John had Wednesday night was water (Dr. said tray with different liquids to choose from) All day Thursday all John had was water and black coffee, when surgeon got here Thursday around 5:30 PM he asked how he did with liquid trays. John “never got a tray” Surgeon “ good help hard to find” so basically resident forgot to order tray and did not respond to nurse many pages. He got a tray within 5 minutes and sucked down the soup and a milkshake. I was worried that he was eating too fast but he seemed to do fine. Today for breakfast he had scrabbled eggs and a biscuit. Chest tube pulled at 10 AM, post Chest X-Ray normal. Lunch tray ground meat carrots, & pie. Dietitian came told he can eat anything but he must chew and eat small amounts every two hours. IV is gone and feeding tube is taped up (surgeon said he did not think he would need it) John is having a fair amount pain, went from IV pain meds to liquid and he is not feeling to good but refuses to lay down or take a nap. We are waiting for Dr. to get out of surgery so he can write discharge orders. I think last night when surgeon realized that the resident did not get orders written as they should have been he was going to keep John until Saturday when John balked about staying he told him if he tolerated food that he could leave Friday but LATE Friday. John does not remember the LATE part. I don’t think John realizes how extensive his surgery was and how wonderful that he is getting discharged this quickly. I know he is feeling better because he is getting crabby. LOL! Last Friday at this time he was getting out of surgery this Friday waiting for discharge. WOW!

TerryV

Sounds like our day yesterday
I understand what you're going through. That sounds much like our day yesterday. Nick woke up bouncing and didn't stop until they let him out.

Hoping that all goes well for you when you return home!

Terry

Laura23

TerryV said:

Sounds like our day yesterday
I understand what you're going through. That sounds much like our day yesterday. Nick woke up bouncing and didn't stop until they let him out.

Hoping that all goes well for you when you return home!

Terry

Hope you are home now!
Sounds like John is doing great! I know Luis couldn't wait to get out and told the resident that if they kept him one more day, he would try to escape!

Laura

NikiMo

Longest week EVER!!
Hey Erica,

So happy you two are heading home, if your week was anything like ours it dragged on forever, and our week was pretty uneventful thank God! Try to rest up and get some good sleep, your days will be long at home too! I have taken time off from work so I am puttering around the house, cleaning, caring for Jeff, cooking the meals, the standard stuff. I feel like I am about to pass out at about 10, have a little more energy tonight! When you have time you can check out the other post Terry put out, we compared notes on menus. It is a little tricky trying to think up nutritous and high calorie foods in little servings.

So happy to hear John is coming home. Prayers for the path report.

Niki

Ericalynn

Laura23 said:

Hope you are home now!
Sounds like John is doing great! I know Luis couldn't wait to get out and told the resident that if they kept him one more day, he would try to escape!

Laura

WOW-They all Sound Alike
Laura & Terry,
It sounds like our guys basically acted the same way. I think they wanted John to stay one more day because he had such a late start with the food (resident error) but John made it CLEAR he expected to go home on Friday! The surgeon told him it was possible but it would be LATE Friday. Some how John did not remember the "late" part. He has the patience’s of a Nat! Well we are home and he is now in bed but he is in more pain than when he was at hospital. I just keep reminding my self that each day will get better. Now I have to convince John that it WILL get better. I think he will see the glass half FULL tomorrow. He needs a good night sleep in his own bed! Love you both
Good Night
I need a good nights sleep too!

TerryV

NikiMo said:

Longest week EVER!!
Hey Erica,

So happy you two are heading home, if your week was anything like ours it dragged on forever, and our week was pretty uneventful thank God! Try to rest up and get some good sleep, your days will be long at home too! I have taken time off from work so I am puttering around the house, cleaning, caring for Jeff, cooking the meals, the standard stuff. I feel like I am about to pass out at about 10, have a little more energy tonight! When you have time you can check out the other post Terry put out, we compared notes on menus. It is a little tricky trying to think up nutritous and high calorie foods in little servings.

So happy to hear John is coming home. Prayers for the path report.

Niki

With you on Longest Week Ever!
I have a feeling though that we might have a few long weeks at home. Sounds like the 1st couple of weeks are challenging if I read Paul & BMKY correctly - in the "finding balance" thread.

Glad you're home, Erica! Did John get a Jtube? If so, you can get his pain meds in liquid and put them directly in to the tube for a bit faster relief. Fingers & toes crossed for a good path report.

Did you guys see where Jeff T passed his swallow test but won't get the NG tube out until Monday? Wow! He had surgery same day as Nick - 09/08. Glad to be where we are and not where he is....

Thoughts & prayers with you both! Love and peaceful dreams to us all

Terry

Laura23

TerryV said:

With you on Longest Week Ever!
I have a feeling though that we might have a few long weeks at home. Sounds like the 1st couple of weeks are challenging if I read Paul & BMKY correctly - in the "finding balance" thread.

Glad you're home, Erica! Did John get a Jtube? If so, you can get his pain meds in liquid and put them directly in to the tube for a bit faster relief. Fingers & toes crossed for a good path report.

Did you guys see where Jeff T passed his swallow test but won't get the NG tube out until Monday? Wow! He had surgery same day as Nick - 09/08. Glad to be where we are and not where he is....

Thoughts & prayers with you both! Love and peaceful dreams to us all

Terry

Jeff T
Hey Terry-

I cannot find that post that you mentioned about Jeff T. Do you remember where you saw it?

We are headed back to the hospital for a checkup on Monday. If Jeff T is still there, We'd like to stop by and see him. He was definitely encouraged by seeing Luis right after his surgery. If he's had to spend this much time in the hospital, I'm sure he's bummed.

Thanks!
Laura

NikiMo

Laura23 said:

Jeff T
Hey Terry-

I cannot find that post that you mentioned about Jeff T. Do you remember where you saw it?

We are headed back to the hospital for a checkup on Monday. If Jeff T is still there, We'd like to stop by and see him. He was definitely encouraged by seeing Luis right after his surgery. If he's had to spend this much time in the hospital, I'm sure he's bummed.

Thanks!
Laura

Jeff T
Hey Laura,

This post http://csn.cancer.org/node/226374 all the way at the bottom he posted about the NG tube. Hoping he will come home soon after Monday. Maybe a visit from Luis would lift his spirits.

Niki

chemosmoker

Sorry for ALL the headaches & GREAT NEWS!!
Erica and John,
I am SO happy for you to be getting out soon (if not out yet at this writing!) and I am praying for you both!
I am happy the leak was NOT a leak and that he is eating and swallowing.
The mix up and ignored orders sound SO familiar!! I get that crap even though I am not doing chemo or surgery, just over pain meds and the like when I have been in!
It is a crappy system and like William I am so afraid it is just going to get WORSE if the gov-ment takes it over!! UG!
OK enough I digress!

I am SO happy for John to be done with his surgery and I wish him a VERY speedy recover and to be home soon if not yet. Been away for 3 says so I am catching up now!
So much good news, all in all!
Keep your spirits HIGH!! You made it to the other side!
-Eric

Laura23

NikiMo said:

Jeff T
Hey Laura,

This post http://csn.cancer.org/node/226374 all the way at the bottom he posted about the NG tube. Hoping he will come home soon after Monday. Maybe a visit from Luis would lift his spirits.

Niki

Thanks Niki!

Thanks Niki!

Ericalynn

NikiMo said:

Longest week EVER!!
Hey Erica,

So happy you two are heading home, if your week was anything like ours it dragged on forever, and our week was pretty uneventful thank God! Try to rest up and get some good sleep, your days will be long at home too! I have taken time off from work so I am puttering around the house, cleaning, caring for Jeff, cooking the meals, the standard stuff. I feel like I am about to pass out at about 10, have a little more energy tonight! When you have time you can check out the other post Terry put out, we compared notes on menus. It is a little tricky trying to think up nutritous and high calorie foods in little servings.

So happy to hear John is coming home. Prayers for the path report.

Niki

Long Week
Niki,
You are so right this is the longest week ever! I thought I knew what tired was but if I didn't I DO NOW! I was planning on going to work next week, now I am wondering if that is a good idea. Saturday John slept for 4-5 hours in the afternoon, he said it was the best sleep he has had in years I was out shopping I should have been in bed too, LOL. Last night he was up every couple of hours & so was I. He is having much more pain than he did the last couple of days in the hospital. I guess it is the difference between IV Meds vs. oral. They also had him on toradol IV, I think the toradol helped with aches & pains but toradol is very hard on kidney so you cannot stay on that med for long. He does not seem to have an issue with eating he learned very quickly to slow down and stop when full. I will look for Terry’s post on foods. Hope all is well with you & Jeff! I am lying on the couch watching BUC’s lose & tracking my fantasy players (My team lost last week) I see Eagles play tonight, I’ll be watching.

Ericalynn

Laura23 said:

Jeff T
Hey Terry-

I cannot find that post that you mentioned about Jeff T. Do you remember where you saw it?

We are headed back to the hospital for a checkup on Monday. If Jeff T is still there, We'd like to stop by and see him. He was definitely encouraged by seeing Luis right after his surgery. If he's had to spend this much time in the hospital, I'm sure he's bummed.

Thanks!
Laura

Checkup
Laura,
Hope Luis has a good post-op visit. How is Luis feeling?
If you get to see Jeff T. tomorrow say hi for me and tell him we are all cheering him on from afar!
Erica

Ericalynn

chemosmoker said:

Sorry for ALL the headaches & GREAT NEWS!!
Erica and John,
I am SO happy for you to be getting out soon (if not out yet at this writing!) and I am praying for you both!
I am happy the leak was NOT a leak and that he is eating and swallowing.
The mix up and ignored orders sound SO familiar!! I get that crap even though I am not doing chemo or surgery, just over pain meds and the like when I have been in!
It is a crappy system and like William I am so afraid it is just going to get WORSE if the gov-ment takes it over!! UG!
OK enough I digress!

I am SO happy for John to be done with his surgery and I wish him a VERY speedy recover and to be home soon if not yet. Been away for 3 says so I am catching up now!
So much good news, all in all!
Keep your spirits HIGH!! You made it to the other side!
-Eric

Home Sweet Home
Hi Eric,
We made it home Friday night, John was discharged about 6:30 PM. The Surgeon and resident were in surgery all day. We probably could have gotten out sooner if I would have taken the script for pain meds to my local pharmacy. The hospital has a pharmacy there in the building for OP. I wanted to make sure we went home with pain meds. The order was for liquid morphine, I was worried that I would get home & local pharmacy would not have "liquid" & then John would be home with no pain meds. We would have been able to leave about 30 or 40 minutes earlier if we didn't wait for prescription to get filled. We would have hit worse traffic at 5:30PM Tampa traffic is terrible. My sister-in law was with me this week, she lives about an hour outside of Nashville and I heard all week how our traffic is worse than Nashville’s. I think John had excellent care but the hospital is a teaching institution so there are errors made. The resident (I believe is a first year) has a ways to go in her education. The beginning of the week the 3rd year resident was great, on top of everything (John actually liked him better than surgeon) unfortunate that he had to leave town in the middle of our stay. I am amazed that 1 week post op John is home eating regular diet and sleeping in his bed. I love that you are out there rooting for us. I had my laptop with me @ hospital and I read post on the site everyday. I always look for your posts and you make me smile or laugh when I read some of your thoughts (still LOL bout CAPS). I still say you should write a book I would buy it you’re a great writer. I’m in your corner keep posting!
Love Erica
Wife of John
T3, N1, MO
MIE-9-9-11
Home from Hospital 9-16-11
Waiting for Path Report
Taking it One Day at a Time

NikiMo

Ericalynn said:

Long Week
Niki,
You are so right this is the longest week ever! I thought I knew what tired was but if I didn't I DO NOW! I was planning on going to work next week, now I am wondering if that is a good idea. Saturday John slept for 4-5 hours in the afternoon, he said it was the best sleep he has had in years I was out shopping I should have been in bed too, LOL. Last night he was up every couple of hours & so was I. He is having much more pain than he did the last couple of days in the hospital. I guess it is the difference between IV Meds vs. oral. They also had him on toradol IV, I think the toradol helped with aches & pains but toradol is very hard on kidney so you cannot stay on that med for long. He does not seem to have an issue with eating he learned very quickly to slow down and stop when full. I will look for Terry’s post on foods. Hope all is well with you & Jeff! I am lying on the couch watching BUC’s lose & tracking my fantasy players (My team lost last week) I see Eagles play tonight, I’ll be watching.

I can't even remember what day of the week it is....
I have to keep asking Jeff, 'what day is it today..I mean what day of the week?" All my days are blending together, I think we were in Baltimore last week, but it could have been 2 weeks ago for all I know. I think it is because I haven't been to work in three weeks, I have no schedule so I have no reference of time any more! Eating is getting easier over here, he is eating a tuna on thin bagel sandwich now. He walked around the block twice today, so things do get better. He was also having problems with pain, I think you are right it is going from IV to pills. I have to beg him to take the pills sometimes. He only likes to take them at night when the rib pain gets really bad. He has lost 10 pounds, but we are holding steady at 180. I am on the hunt for benecalorie, I can't find it anywhere, guess I will get it from Amazon.

We are sitting here having a lazy Sunday waiting for the game (well he is having a lazy Sunday), I have already been to CVS and the supermarket. I plan on cleaning the bathroom and vacuming. Tomorrow I am going to tackle our front lawn, it needs some pruning and what not. I could get to use to life without work, unfortunately my bank account won't..hahaha.

Take care of yourself and John

Niki

paul61

NikiMo said:

I can't even remember what day of the week it is....
I have to keep asking Jeff, 'what day is it today..I mean what day of the week?" All my days are blending together, I think we were in Baltimore last week, but it could have been 2 weeks ago for all I know. I think it is because I haven't been to work in three weeks, I have no schedule so I have no reference of time any more! Eating is getting easier over here, he is eating a tuna on thin bagel sandwich now. He walked around the block twice today, so things do get better. He was also having problems with pain, I think you are right it is going from IV to pills. I have to beg him to take the pills sometimes. He only likes to take them at night when the rib pain gets really bad. He has lost 10 pounds, but we are holding steady at 180. I am on the hunt for benecalorie, I can't find it anywhere, guess I will get it from Amazon.

We are sitting here having a lazy Sunday waiting for the game (well he is having a lazy Sunday), I have already been to CVS and the supermarket. I plan on cleaning the bathroom and vacuming. Tomorrow I am going to tackle our front lawn, it needs some pruning and what not. I could get to use to life without work, unfortunately my bank account won't..hahaha.

Take care of yourself and John

Niki

WalMart
Nicki,

Have you checked your local WalMart for BeneCalorie? They carry it in the same section as the vitamin supliments in my WalMart

Glad to hear things are moving along well.

Paul Adams,
McCormick, South Carolina

NikiMo

paul61 said:

WalMart
Nicki,

Have you checked your local WalMart for BeneCalorie? They carry it in the same section as the vitamin supliments in my WalMart

Glad to hear things are moving along well.

Paul Adams,
McCormick, South Carolina

Everywhere but!
HI Paul,

They just opened a new Walmart near us, I will go there tomorrow and see if they have it. I tried almost everywhere but there!

One question for you...how many calories do you eat now? I am trying to figure out how Jeff will ever get in over 2000 calories like they were saying he needed during chemo. Each meal is so small I can't imagine they are over 300 calories, so even eating six meals a day he is only getting to 1800. It is way too early in our new normal to be frustrated, but I am.

Thanks,

Niki

Laura23

Ericalynn said:

Checkup
Laura,
Hope Luis has a good post-op visit. How is Luis feeling?
If you get to see Jeff T. tomorrow say hi for me and tell him we are all cheering him on from afar!
Erica

Luis
Thanks Erica. He is doing a little bit better every day but it is slow going. I think that he hadn't fully recovered from the biopsy before he had the MIE. The biopsy was fairly difficult as they had to go in through the chest to get up near his neck area. He stayed overnight and had a chest tube with that. He also was still having some pain in the rib area. It was less than 2 weeks from the biopsy until he had the MIE. Right now he is totally exhausted after taking a shower or taking a walk. It is hard to believe that he will be 3 weeks post-op on Tuesday. The days do just seem to blend one into another. If we didn't have 2 school aged kids (and one in college) to keep track of their busy schedules, I wouldn't know what day of the week it was either.

I also think that still being on the liquid diet doesn't help. Luis is a fairly picky eater to begin with and won't eat yogurt, pudding or oatmeal. So he is pretty much limited to juice, broth, ice cream and fruit smoothies. I have offered to put some things in the blender but he turns his nose up at that. We are both hoping for his diet to be advanced tomorrow.

Glad to hear that John is doing so well. Call your doc tomorrow if you can't get the pain managed properly. Luis was on crushed pain meds that they put through his feeding tube for a couple of days before he was discharged and so didn't have the sudden transition from IV meds when he got home. I will definitely pass your support on to Jeff T and give you an update tomorrow after we see him.

Laura

TerryV

Laura23 said:

Luis
Thanks Erica. He is doing a little bit better every day but it is slow going. I think that he hadn't fully recovered from the biopsy before he had the MIE. The biopsy was fairly difficult as they had to go in through the chest to get up near his neck area. He stayed overnight and had a chest tube with that. He also was still having some pain in the rib area. It was less than 2 weeks from the biopsy until he had the MIE. Right now he is totally exhausted after taking a shower or taking a walk. It is hard to believe that he will be 3 weeks post-op on Tuesday. The days do just seem to blend one into another. If we didn't have 2 school aged kids (and one in college) to keep track of their busy schedules, I wouldn't know what day of the week it was either.

I also think that still being on the liquid diet doesn't help. Luis is a fairly picky eater to begin with and won't eat yogurt, pudding or oatmeal. So he is pretty much limited to juice, broth, ice cream and fruit smoothies. I have offered to put some things in the blender but he turns his nose up at that. We are both hoping for his diet to be advanced tomorrow.

Glad to hear that John is doing so well. Call your doc tomorrow if you can't get the pain managed properly. Luis was on crushed pain meds that they put through his feeding tube for a couple of days before he was discharged and so didn't have the sudden transition from IV meds when he got home. I will definitely pass your support on to Jeff T and give you an update tomorrow after we see him.

Laura

What an incredible support thread!
I love this! One place and updates on all

Wow, Laura! I bet Luis is getting very tired of his current diet. Hoping for you both that he will be moved up to the next level tomorrow.

Erica - Nick is getting pain meds through the Jtube. Seems to be working well, but his pain levels are low. The exit for the chest drain is giving him more trouble at the moment than his stomach zipper.

Niki - You & Jeff are doing a great job of leading they way! Keep it up

and for Jeff T - Erica please pass him all the support he can handle! We're here to cheer him on.

Terry

Ericalynn

NikiMo said:

Everywhere but!
HI Paul,

They just opened a new Walmart near us, I will go there tomorrow and see if they have it. I tried almost everywhere but there!

One question for you...how many calories do you eat now? I am trying to figure out how Jeff will ever get in over 2000 calories like they were saying he needed during chemo. Each meal is so small I can't imagine they are over 300 calories, so even eating six meals a day he is only getting to 1800. It is way too early in our new normal to be frustrated, but I am.

Thanks,

Niki

Benecal
I had to order online our local Wal-Mart’s does not carry. I ordered at Drugstore.Com (they had free shipping that day). Your Wal-Mart might carry it if not I know it is available online.
Erica